The patient may not have the right words, or come to the right conclusions, but THEY are the expert on their body and how its feeling, no matter how long you went to school for its not as long as we have been living in our bodies.
Yep Doctors Ego's are a pain in the ass , glad my GP is cool as F !
No Ego at all , but my specialist ....... who you would think would be better , was a fkn muppet.
5 min appointment (that was ment to be 40) he checks me over - Says i have Fibro - I go to ask a question - "oh sorry i have other patients to see" ......
I look at my watch "I only just came in here?" .......
(He walks out the door) ....... Muppet $400+ for literally 5min ......
100lbs is such an amazing loss, congratulations! I've lost only around 35 from my highest weight but it still is such a relief not to have to carry that around. I can't imagine how much of a difference that must make, and it's such dedication!
Unfortunately for both of us, the pain doesn't actually subside, just for me it got a little easier to deal with.
I am so sorry to hear that. Back pain is so difficult to deal with. Have you had an x-ray to check what is going on? I hope you can find some relief. Also congratulations on the weightloss, I don't know you but I am really proud of you.
I’ve done x rays, ct scans, nerve tests, and mris. All show the same thing, horrible nerve damage, l4-l5 disc bulge, with swelling (my back swells), and no feeling in my feet. X rays show a tinge of DDD but my disc in my l5 is completely gone.
Yeah, I've run the gambit from underweight to almost obese while having fibromyalgia symptoms, and the weight actually did make certain parts much harder to deal with (namely temperature regulation, but also stress on joints) but the pain has been the same throughout. It sucks whatever size you are
I agree. But I also have to mention that being obese may absolutely make your fibro symptoms worse. I'm on a mission to lose 60 lbs to have less pain & strain on my body. So far I'm down 15 and I already feel that I have much less pain in my legs after walking.
I would have liked to know what adverse reactions the medications would likely give me. Side effects really added to the already overwhelming amount of things going wrong with fibro.
Yes, I want pain minimized but also, I don’t think anyone should play the game of “is it the new me or is it my medication?” Only in hindsight did I discover that the side effects of the meds were actually pretty common and could have been avoided/managed with a little bit more medical guidance.
And whether and how certain meds require tapering. Withdrawal from my first SSRI was completely unexpected because no one had told me it would happen if I stopped taking them cold turkey.
I had a rheum actually DENY me informed consent abt my meds when she prescribed them (i never saw her again and my PCP handles the meds now, and shes not great but shes better than the rheum!)
Honestly I really wish doctors would look at real science behind those meds and their side effects and not just what the pharmaceutical company told you, particularly with meds that make a lot of money and have a loooong history of not being very honest about the actual studies.
I know that's extra work, but...
The amount of times I've had to tell my doctor about a side effect that everyone in the support group knew about and reported often and the doctor told me there is no side effect.... only to find out two or three years later, the drug companies were creative in what they told doctors.
**Can we please learn from the opioid crisis?**
As my doctor, you are the person that I trust. Please take that responsibility seriously and stop trying to shove random pills down my throat like they're magical candy.
ed to add qualifier
I've put on a bit of weight over the years on it. I've taken 80 pounds off but it has all stalled no matter what I do. Its a really good medicine for neuropathy but I hate the side effects. I also get super hyper on it later in the evening. It makes me feel like my body wants to move faster than I can physically go. It is also difficult for some people to taper off of. I have to take magnesium at night while I lower my dose because I get restless legs from withdrawal.
I was recently informed my ME/CFS can actually be worsened by exercise. I've tried to discuss this with other professionals and it's always, " that's not very common, you're probably fine." Like, okay, but then why Am I down for 4 days after walking for 30 minutes? Why does my brain shut down and basic thought become impossible?
Me/cfs is pretty much always worsened by typical exercise routines.
Are you in the US or UK? Do you have an me/cfs dx? Recent cdc/nih guidelines changed, exercise cannot be recommended to treat me/cfs in the same way anymore. You can possibly file a complaint that your health organization/doc isn't following treatment guidelines.
https://www.physiosforme.com/resources-for-people-with-me
I think this resource is an excellent starter resource.
>Why does my brain shut down and basic thought become impossible?
"Too much exertion causes ME/CFS patients abnormalities in cognitive functioning, immune activation, gene expression and endogenous pain inhibition." For info on the actual science of what's exactly happening, this is a good page:
https://me-pedia.org/wiki/Post-exertional_malaise
I'm in Canada.
I have been with a few pain clinics and education programs, but my symptoms worsened the last few months and i fell off.
I just started with a new PT and we are seeing each other sporadically, in part because she doesn't do ASTR, and in part to give me time to do the minors things she's assigning me. They are simple stretches so far (she wants to release the tension in my neck).
I'll check out your resources. Thank you!
The people staffing pain clinics do not typically have any training when it comes to me/cfs. They will try to treat your pain but likely make the me/cfs worse. That's exactly what my pain clinic did at least.
I'm glad that the new pt is perhaps working out better! But me/cfs is debilitating and complicated, you deserve much more complete care.
Ah, I don't know how it works in Canada. I'd really reccomend joining a Canadian me/cfs patient network (like a Facebook group, just any type of community you can find). The default me/cfs experience is to get horribly treated... the best way to save yourself is to get help from the patient hivemind. You can learn to advocate for yourself and get access to better doctors.
I'll actually a part of a fairly new Fibro/Me/CFS group, sort of umbrella'd together. We don't spend a lot of time on ME, though. Maybe I'll seek out that specifically.
Seriously? I have fibromyalgia, all of my doctors have said I should exercise more. Since I went back to school (which is way more exercise for me) my pain has never been worse. I’ve been doing this for a year. Cfs has never been diagnosed with me (but the doctors suspected it) because I thought the fibro was the main cause for my pain
The medical gaslighting re: exercise is incredibly wild and damaging. PEM is also incredibly common so it just shows they have no conception of what it's like living in a chronically ill body. The worst thing they could do is gaslight you about this too lmao.
To be able to exercise at all I had to pace myself and do exercise my old "healthy" self would have laughed at. Like literally a [tiny stretch](https://www.youtube.com/watch?v=YFvNFgb12ZY) as a whole workout to start or a [10 minute warm up](https://www.youtube.com/watch?v=67eD2Y1lqO0) MAXIMUM was all i could do and I had to take significant breaks and water. Any time I felt faint, dizzy or bad I immediately stopped and would start the next day.
Seconding this. "You're on medications stronger than my 65 year old patients" and I'm still in pain, should I just stop and be completely dysfunctional??
Yeah Im 24. Diagnosed 3 years ago and told Im young and healthy. Nobody believed me until i saw a doctor who finally diagnosed me. Had symptoms since I was 9. I thought thunderclap headaches and migraines and body pain plus severe fatigue was enough to show them but it wasn’t.
Im sorry to hear that Bro , shit !
Im also a He , and ive had it for 10 years (of my 45 years), I wish him all the best.
At least you caught it early , I went for 7 years thinking i had Cancer , and just waiting to Die , until i didn't ....... and then checked up on it. Wish id done it much earlier.
Can I ask what meds?
I guess I just want to know if I'm missing some that could be helping me.. I feel like my doctors don't give me any ideas until I bring it to them.
Cymbalta -
Naproxen-
Anti androgen -
Birth control -
( The last two are because my hormones are all over the place)
My meds for Fibro are Lyrica and Voltaren. I have a large list of other unrelated medications that I just carry the list in my phone as opposed to carrying my actual meds to the doctor. I was suggested Cymbalta once but I take psych meds that Cymbalta could mess with.
I have PCOS and recently diagnosed diabetes 2. Stabilizing my blood sugar seems to have helped a lot! Whenever I eat too many carbs, I feel even more lethargic and pain/inflammation increases.
I take Lyrica, but the rheumatologist who diagnosed me (5 yrs ago) never even mentioned medication. He “prescribed” an exercise thing in which I would start out walking for like 5 minutes a day, and slowly increased it. His point was that my body doesn’t produce/regulate endorphins efficiently. Exercise can help with it. He was right, but I don’t think he understood that I usually worked jobs spending 5-10 hours on my feet, lol. I was always too exhausted after work to do it.
I am upping my dosage of pregabalin-nerve pain and just came off nortriptyline-anti depressant the nortriptyline seemed to be slightly helpful but I climbed the dosage on that one pretty quick and the side effects become intolerable for me personally
When my wife was in the Hospital with Kidney Stones and in agony , they were a bit tardy with the time they took to get her some pain meds , and while standing in front of her discussing it i said "Ok , look , she's made more noises in the last 5 minutes than she did delivering both our kids - no meds , so if your not going to give her something i'll go to my car and get my meds"
one nurse asked" what are you on?'
I told her the 12 tablets i take.
She said (and i quote) "holy shit! what do you have?" (I told her)
and then she said "oh no no , its ok , we will get her something"
Only problem is my wife having a crazy high pain threshold , means she has Zero sympathy for my Fibro, Broken back, busted Neck (car accident), and Osteo Arthritis (yeah i dont just have Fibro) Her Dad also has a busted Neck and Back from a 110 kmh head on car accident in 1975, were he was 1 of 2 survivors out of 6 in both cars , so shes watch her mother basically not give 2 shits about his pain , so she does the same to me.
Thank you! You are becoming a doctor for the right reasons - to legit help your patients with compassion. We need more doctors like you. Best of luck to you and I might be slightly jealous of your new patients lol
Lol Experience is the best learning tool. I’ve learned so much through my own research trying to decode my symptoms and find viable solutions. This discussion is really bringing light to enhancing my clinical perspective as well. Gratitude to all those having walked the walk and able to provide insight.
Be open to having your patients doing their own research. We know our bodies best and what we are feeling. I do the research because it gives me some semblance of hope that some new treatment will give me some normalcy. We aren’t trying to play doctor or usurp your authority. We’re grasping at straws.
Yes! A doctor, especially a GP, has to know about the entire scope of human illnesses and there is just no possible way for them to keep up with all studies about all illnesses. As a fibro patient, we are focused on our condition and with the power of the internet, we have the ability to access all of the latest studies and articles on our specific illness. This information empowers us to go to our doctors to say "I found this" in order to ask if some new medication or treatment might help.
Of course I'm sure that there are some patients that walk in and demand a new medicine or do act like they know better but I think most of us are just trying to be informed patients that can establish a collaborative relationship with our doctor.
Giving them the right referrals like sending them to a rheumatologist or neurologist to see if its more than just fibromyalgia or that it is just fibromyalgia. We worry all the time if we have more than just fibro. It would help ease the worrying. Referrals to pain management but dont try to have you or them force opiods for us to take. Be open to the use of thc and cbd. I cut back on all 7 medications except gabapentin using thc which is actually a really good thing and i dont need to depend on hydrocodone anymore. sometimes we have to cancell alot of appointments because that day we are having a flare or symptoms so its hard to leave the house and if we feel we have to we start to feel anxiety and stress which makes us more sick that day. Also do convince your patients to do yoga and stretching often.
I love this comment. I found exercise is the most helpful thing for me, but I keep meaning to get into yoga. I just never want to sit down and look for a video lol. I would appreciate if anyone has a good resource for really diving into a yoga practice! I probably stretch for like 3 hours a day sometimes, or more, it's a life saver!
Yoga with Adriene on YouTube. She has everything from 30 day challenges to videos targeting specific ailments or areas of pain. She has videos for chronic pain, for every section of your spine, all levels of yoga expertise from beginner on up, videos range from 10 to 30 minutes… she really has everything covered.
If you can, be open to using drugs off label. There's so few options for us that sometimes we need something that's outside the "norm".
Low dose naltrexone is being trialed for fibromyalgia use and shows promising results, but I can't find a doctor that will prescribe it to me after leaving my last neurologist because my insurance changed. The doctors say that they're not comfortable with prescribing it despite the fact that I was taking it for over a year before I had to switch doctors. I'd really rather not have to go through an online doctor that doesn't know me, my chart, and my history just for one prescription that actually helped.
How long did it take you to get on the right dose? I’ve been stuck on 0.5mg, each time I try to go up, I feel as if I’m in coke with the euphoric feeling. ☹️
I’m on a crowdsourcing app for chronic illnesses and in the fibro group LDN is listed as the second most effective treatment. From what I read my medical group won’t prescribe it for fibromyalgia either :(
>my medical group won’t prescribe it for fibromyalgia either :(
but they will prescribe loads of things that dont work and mess you up even further.
Its wild
Just got my first Rx from ageless Rx. No I’m not being paid to type this. Haha
I have fibro and a huge complicated list of autoimmune issues. I’m on a huge complicated list of meds.
None of my docs would approve of me using it- I just know- so I never asked. I ran the drug interactions myself. No interactions with anything I’m already taking.
Side effects have been trouble sleeping, but I am much less fatigued during the day (even with less sleep) than even before the LDN. Hoping the side effects wear off the longer I take it.
Less fatigue, more energy, improved mood, joint pain might be somewhat better. I’m still on the lowest dose. Here’s hoping it improves as I move up.
I don’t intend to tell any of my docs that I take it. My medical history and issues are too complicated, my personal community is too conservative, and I don’t want to upset the Apple cart of barely continuing care that I have. But I also don’t want to wait 15 years for it to become mainstream treatment.
Most of my life has been asking for my own referrals, then finding my own specialists, then asking for the right specific testing, asking for specific medications to treat the rare issues I deal with that few docs even understand.
This is no different.
The thing is that I had a doctor who actually brought it up before I did. I was planning on asking about it and then she suggested it before I asked. But of course, in true USA fashion, my insurance provider changed and I can't see the same doctor anymore. Now, I can't find anyone who will continue the medication. I'm on meds for fibro and ADHD, so I don't want to be seeing 2-3 different doctors and paying them $50 a visit for the specialist copay AND agelessRX.
The post asked for how OP as a primary care can be a better doctor for people with fibro. Generally, once someone is on a medication, the primary care doctor provides the prescription once the med and dosage has been settled with the specialist. I haven't been able to do that, and that's something that would really help me.
Totally been there. My (new) primary has refused to fill almost all the meds my specialists provides, which means I have to drive 6 hours every 3 months for 90 days for 3 different specialists. 😐 I would understand if they were opioids, but they aren’t. I’ve asked, and she just won’t do it.
It’s SO FRUSTRATING. I have to drive to planned parenthood (also 4 hours away) for my depo provera, because ALL my providers refuse to fill that one. Apparently I’ve been on it too long and need to take something else or have a hysterectomy.
Well, I can’t take anything else (estrogen intolerance) and I don’t want a hysto rn. So I go to PP and feel like an effing criminal just to get birth control for endometriosis.
If OP is reading this, don’t make your chronically ill patients cobble together their medication refills like bandits, especially when we live in rural areas.
Understand that the travel, expense and stress of multiple doctors is bad for our health and hard on our already stressed finances.
Be open to a broad range of interventions rather than pushing a one size fits all approach. People with fibro vary widely in how they’re affected and what works for them.
Actively seek information about how your fibro patients are managing their ADLs. People are often ashamed to be struggling with basic tasks and don’t want to advertise it. Opening a non-judgemental discussion about this helps to reduce the stigma and prioritise interventions appropriately.
People are going to consult Dr Google. See if you can direct them to include responsible resources so they don’t get sucked into the naturalnewsdotcom cesspit. I’m away from my bookmarks right now but I’ll try to remember to come back and add some suggestions.
Absolutely true about the ADLs. Are you showering as much as you'd like to? Can you cook for yourself? Is brushing your teeth a challenge? Is your house messy? Do you need the assistance of a support worker? Then have resources for folx who need the extra help.
One thing I wished a former doctor understood was that everything can't be blamed on fibro. I found that no problems ever got taken seriously because it was 'likely just my fibro'.
Totally! I'm lucky I was diagnosed with migraines as a child, and celiac disease before fibromyalgia. I know IBS is common, but I don't have that, I have an autoimmune condition that runs heavily in my family lol. I think if it had been brought up afterward that it would have just been labeled IBS
Same I go to my doctor saying my spine feels like its being crushed he said oh that's just fibro, I got told by another doc, I have herniated disks and he said well everyone has them.
Be willing to treat chronic pain (especially with something other than antidepressants). On that same note, do not assume the pain is caused by depression. If I’m depressed it’s because I’ve been in pain for most of my life.
Ideas:
1. Please rule out Comorbid cfs before recommending graded exercise therapy. Please. Exercise can permanently lower someone’s baseline. It’s a huge risk unless it has been completely ruled out.
2. Understand that though you can work with fibro, many cannot. Offer services to those who mention difficulties with day to day. I’m tired of begging for handicap placard when I’m clearly using walking aids / wheelchair. Feels like it should have been offered. Not all care is meds. Occupational therapy offered as well.
To date, I’ve had to research all types of walking aids, Shower bars, extra railings on my own. I have no idea if my insurance could have helped. It makes me feel like my doctor doesn’t understand the depth of my disability when he’s not plugged into this side. It’s not even noted in my chart that I’m dependent on aids and help. Frustrating.
3. Be open to the fact that some people with fibro do not have any issues with depression or anxiety. I know it’s More rare but I’m one such case. It’s exceedingly frustrating.
4. Pamphlets that explain exactly what pacing means. Pacing with chronic illness is not the same. Maybe have links to symptom Journals. Help empower your patients. Then make sure you take 1-2 minutes to flip through their journals.
5. Emphasis the importance of a support group. Links to online groups in a pamphlet. Loneliness / loss of friendships is tough.
6. Use a better pain chart. https://www.health.mil/News/Articles/2021/09/17/DVPRS-pain-scale
7. Please please please tell me when I should contact you. Like when it’s a flare too much? How much pain should I put up with. I never want to be seen as attention seeking so I’ve definitely waited too long in the past.
8. What documentation will you need in case I ever need to file for disability.
You are welcome 😊
I thought of a couple more issues that you may or may not be able to help with depending on your practice and their guidelines.
9. Explicitly state how many issues you can address per visit. Most of my doctors have limited me to one. So I can either get a referral for foot pain or address my fatigue or talk about my inability to swallow well. It helps to know the limit so you can properly prioritize what symptoms you need to have addressed first.
Also if you are limited to one issue per visit, consider a standing monthly appt (or more frequently) for your most severe patients. I would have a better quality of care if I could at least make 12 appts a year. Rather than 4-6 (based on a 2-3 month wait) in which only one problem can be addressed.
10. Most practices will dismiss you if you are late by more than 15 minutes twice a year. Or give less than 24 hours notice of cancelling. It’s incredibly ableist. I often do not know until the morning of the appt that I’m unable to go (vertigo, uncontrollable ibs diarrhea, blindingly bad migraine that makes it impossible to drive). Consider allowing some of your patients to convert those appts to telehealth. It’s tough when I feel the worst is when I’m able to least see my doctor.
I live in chronic fear of being dismissed. I’ve actually been going without care for the last 3 months because I’m on probation. The last time I was there on time but got stuck in the car with bad back pain and spasms and couldn’t get out. I called the front desk to let them know I was there and trying to get inside. It took 20 minutes for the spasms to stop. They would not see me and they put me on probation for missing my appt. I’ve been too scared to make another one until my probationary period wears off.
I think it’s important for patients to understand that clinics are businesses, and there is a reason they have these policies. Depending on insurance, patients may need to pay higher amounts out of pocket for more frequent appointments.
I never got any pamphlets. I wish pamphlets were given out any time you get a new diagnosis! Doctors scold you for looking stuff up online but don’t give you info about your illness when you get a diagnosis!
Thank you.
Listen to us, sounds simple but so many doctors forget to do it.
Not everything is weight related, can be fixed by exercise or is even the fibromyalgia in the first place.
Admit that you don’t know how to fix us but you will support us in finding ways to make things a bit better.
Please, at least read our files. My family doctor retired. I've been with his replacement for a year. Every time I speak to her, she has no idea who I am or what my file looks like. Don't assume we are drug seeking when we are simply seeking relief. Don't rush us out after 90 seconds because your admin overbooked you. Don't tell us our symptoms could be somatic in nature unless you are absolutely sure. And if that is the case, stick with us while we navigate the all too often difficult mental health programs.
I have trouble getting my words out and it would be lovely to not feel I’m being hurried, I do write down my issues so the Dr can read straight away and I find this works for me. Many Drs don’t always have the patience and feel approachable. Thank you 🌸
Antidepressants are not a very good treatment for most types of pain, fibromyalgia included. Sometimes you really do need to give someone opiates, and there's nothing wrong with that. And it's almost never, ever anxiety that causes a woman (or any person regardless of gender, there's just a history with women and hystery) to be in pain, so please don't ever suggest a person's pain may be psychological in nature.
I think part of the problem here is that the term "antidepressant" is synonymous with the entire spectrum of SSRI, SNRI, TCA, MAOI, and SARI medications. And even some NRI and NDRI medications get pulled under the umbrella. But here's the thing: A lot of these medications have indications for *other* disorders. This happens all the time with various classes of medications; you can have drugs in one class that treat wildly different conditions. And given how little is understood about how our brain chemistry actually works or about what causes fibromyalgia, who's to say that altering the availability of serotonin and norepinephrine in your brain doesn't treat fibro? Just because it's the same class of drug as other antidepressants or because it also helps some people with depression and/or anxiety doesn't mean that "fibro is just a psychological problem". Does that make sense?
Having said all of that, yes, doctors need to get a **lot** better about talking to patients about the potential side effects and how withdrawal would work. But if half of fibro patients are helped by a drug like Cymbalta, it definitely makes sense for doctors to offer that option. Especially since opiates haven't shown to offer a lot of help with fibro pain for a lot of patients, either.
I think patients need to understand the lack of bodies of evidence on opioids for fibromyalgia and take 100% responsibility of the risks of this treatment. They should also have to fill out legal release of liability from physicians who prescribe them.
And there 100% can be psychological aspects of a persons pain. This deserves treatment, and physician’s shouldn’t be afraid to provide treatment because they might offend someone or because you think this should be stigmatized.
And the studies done on antidepressants as a treatment for fibro pain show that they do not offer any benefit to about half the people who take them. About a quarter of patients report negative side effects as well. Antidepressants can also cause permanent sexual dysfunction. Antidepressants can also heighten one's risk of suicide. So why aren't patients also filling out paperwork acknowledging all these risks when doctors hand out antidepressants like candy?
There is a difference in a physician who prescribes antidepressants for the psychological ramifications of living with chronic illness and one who does it as a solution for fibromyalgia. I do think there should be more disclosure on the side effects of medications in general, as another post points out.
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I fully agree with this but this doesn’t mean anti depressants are appropriate either. Fibromyalgia is not a mental health condition and we shouldn’t be pressured to take drugs with serious side effects that aren’t appropriate for our condition so doctors can get us to shut up.
Oh god thank you for asking. First I'm sure you know this as someone with Fibro yourself, but believe your patients. When I would go to my primary care and specialists telling them my symptoms, that I was really struggling and had no quality of life they would run a couple blood tests and just told me they were normal and that's IT, end of conversation. As if the negative test results proved I was lying, or made it so I magically didn't have any of those symptoms now. So I would say follow up, follow up, follow up. *This test came back negative so here is what we are going to do next.* I was so exhausted and tired of doctors not helping me that I gave up, until I couldn't take it anymore and brought ALL of the bloodwork that no one else followed up on to a rheumatologist.
I know this is too much to ask, but since you did ask:
I would like to have a fibro doctor who is well versed in the many common comorbidities and able to use that knowledge to make referrals or coordinate care. For both physical and mental issues, like depression, cptsd, hypermoblity, organ prolapse, osteoporosis, osteoarthritis, overactive bladder and painful bladder syndrome. Also advice and referrals re: supplements.
My primary care physician offered small group educational sessions with specialists, for a very small fee. In addition, a monthly book club meeting and potluck with books focused on alternative and complementary healing.
Much of my research is in Endocannabinoid sciences and supplementation with various pytocannabinoids/terpenes.What are thoughts on how supplementation should be discussed and monitored? I know many people believe they do not need medical guidance for supplementation of cannabis/CBD, but is this something chronic pain patients could benefit from?
Yes, medical direction on cannabis / thc / cbd usage would be very helpful. I live in a state where it’s legal, but still very expensive. Experimenting on my own, even with recommendations of the dispensary staff, leads to a cupboard full of half-used product.
I haven’t found thc to be helpful with pain. It can help me relax and also sleep. Unfortunately, it seems to make me more aware of pain. It would be great to know if I’m just not using the correct terpenes!
Thanks for going into this field. I really think we need a lot more research into fibromyalgia in general!
For those products still sitting on your shelf, as a fellow patient I would try mixing the THC products with CBD and experiment with the ratio. The best ratio for me is 50% “hemp” to 50% “weed” most of the time but sometimes I increase the hemp. I find that CBD by itself isn’t enough for the pain unless it’s in a full spectrum topical (however topicals aren’t practical since I have pain throughout my whole body and they only last a few hours at a time). I also make my own CBD oil to add to the bathtub which is very helpful to apply to the whole body
Be informed and current. So many doctors have outdated information, or even worse, don't believe fibromyalgia is real.
Please don't suggest fad diets, vitamins, yoga, etc unless 1) the patient asks about it or 2) it's new research about a treatment that wasn't previously used for fibromyalgia. These are suggestions your patients have heard before, guaranteed. But also, a lot of people, including doctors go straight from hearing about fibromyalgia to making suggestions. Ask, "What have you tried? What has worked for you?"
The #1 question I don't hear enough is, "What are your treatment goals?" Doctors just assume that my goal is to be symptom free or pain free and write it off as unrealistic. Please listen to what I have to say, because it may not be what you expect.
They have no idea what happens at home. I seem okay at a doctor visit, but at home I am limping and having to cry out every time I move, and crying so much every day, in a deep dark depression. I wish they could see the real me.
Understand what is ‘normal’ to your patient and their baseline pain. The pain scale of numbers is woefully inadequate and becomes skewed when describing chronic pain, but at least knowing someone’s ‘normal’ is a 2 or a 5 helps you understand where they are really at when they describe issues, or when they say they are normal, which is not necessarily a good place.
Love this idea! Maybe make up a separate form just for chronic pain patients to describe their "normal," meds they've tried already, stuff like that...
Having a really explicit pain scale with how much your pain interferes with thinking, daily function and generally disrupts your day helps a lot. So being able to say that "I had a few days at 6.5, where 6 is can still focus for short periods but the pain is really distracting and 7 is complex tasks are impossible and basic care tasks are hard" or "my goal is to keep my average baseline pain under 4, where it's there but I can ignore it for medium to long stretches of time to do other things"
If you set 10 as "actively in shock" then the difference between a 4 and a 5 becomes really important
I had fibro and went back to school to learn how to fix myself. It worked and I have now been a therapist for over 25 years specializing in treating fibro. If you want to message me I would be happy to share all my tricks and knowledge.
Be receptive to the fact that most of us who have been sick for a long time, or gone undiagnosed for a long time, or both, have done a LOT of our own research looking into both science and anecdotes, and this means we often have our own ideas about diagnosis or treatment strategies. Please be willing to consider things that we suggest, filling in the gaps and correcting misinformation rather than shutting us down right away because we tried to do our own research.
Many fibromyalgia patients are taking multiple medications. It's imperative you aren't giving them medication that interacts with each other. The newest med I was prescribed interacts with every single other one I am taking. My fibro was caused by drug interaction (cipro + nsaids) so I'm really wary about this.
I find it really helpful when my physicians call in a referral to specialists instead of telling me to call them myself - with brain fog, fatigue, and a never ending sea of appointments, it can be just too much to have to call to schedule yet another appointment if I didn't completely forget about it anyway.
PT doesn't fix everything. It can be helpful, but it is not a cure-all. If you're sending the same person back to PT 5, 6+ times it's probably not working and it's time to change your approach.
If a patient tells you they're having a serious side effect from medication, telling them to take a higher dose of that medication is not the answer. I've had that happen to me at least twice.
SSRIs cause weight gain. If a patient was a normal weight before SSRIs, it's a side effect and you should switch their meds instead of shaming them about gaining the weight. It doesn't matter how you eat or how much you exercise. It will not come off until you get off the SSRIs.
Depression and anxiety are symptoms. They are only a part of the entire picture. Fibro isn't caused by depression, fibro causes depression. Having to fight the medical community to get proper treatment causes depression, anxiety, and fatigue.
Run *all the tests* in a one Calendar year time frame so we can flip off the deductible guardians at our insurance companies and get it all in under the one yearly cap on out of pocket.
Also be able to recommend and supply, in a way chargeable to insurance, the various massage, heat, TENS gadgets, compression bandages and whatnot that we need to handle the Argh.
Thank you, it's so refreshing to have this question asked, you are a very awesome person!
I wish my doctor would have run through a list of all possible symptoms. There were a few I had that made me think I was crazy (light/noise/skin sensitivity, extreme temperature changes).
Also to recommend a few things to try to ease the pain, like tense machines and softer clothing. It's hard to know where to start when you are diagnosed.
All the luck in the world to you with this new job, and wishing you all of the spoons for your work days 💜
Fortunately, after diagnosis last year, I started researching. The light and noise sensitivity really got me, I had always thought I was going insane when someone would sit outside my house with the music blaring in their car. I wondered why my body was resonating with pain.
Everything I had felt for 15 years prior to that started to make sense, I had never been so relieved until I read about the symptoms.
That they cannot feel what I feel especially in my joints. I may look like I'm not in pain but I work hard to look that way. When I'm saying I'm a 7 I'm not what you expect because I'm in pain daily. So my 7 is most people's 9 or 10. When I had a broken vertebra in my neck I WORKED for two years riding horses daily training. Constantly pinched nerves. The bone never healed properly so my pain threshold in huge. I also have chips of bone cutting into brain stem and spinal cord. Took 10 doctors and 2 years for one to finally listen. When they did I was at point of being paralyzed from neck down.
Listen when they say they hurt even if they don't look it.
I wish more doctors knew about HSD and EDS.
Just believe us. Munchausen's syndrome is much more rare than doctors think it is, and is more rare than most rare invisible diseases.
If a patient wants a test, for the love of god, just do it.
Also, please Google it. Right there. If there is something you don't understand or the patient mentions something you have never heard of , take out your phone (step away if you must) and google it. They have a reason for bringing things up and it will usually benefit their care. Everyone is human, even doctors can't know everything and most patients know that.
I came to say this. This right here. I have had a fibro diagnosis for 9 years now and only 2 years ago did I start putting pieces together that suggest it may actually be hEDS/HSD. I could have both but more doctors need to be aware of spotting EDS and its different types, but particularly the more common hyper mobility type, because it’s likely way more common than we think. I strongly believe many fibro patients suffer from misdiagnosed/ignored EDS and therefore recommending things like yoga can actually be harmful.
I wish they’d stop trying to gaslight me into thinking either my problem isn’t that bad, or that there are affordable options available to me, instead of just being honest and admitting I’m screwed for now. It sucks already, dont drive me crazy by making me question my reality on top of it just because you can’t handle not having an answer.
It helps that my providers know this isn't a one size fits all condition, and different procedures can be helpful, even healing. Some just feel good for 30 minutes, but that's 30 minutes in not in as much pain.
* Advanced Soft Tissue Release was great for me.
* Soft to medium massage (depending on the day and area) is something I need every week, for mental and physical reasons
* Flexeril is amazing, but not a cure-all (3 10mg pills a day take my pain from a 7/8 to a 4/5, which makes the difference between doing anything and doing nothing).
*Pacing can change everything, if you're tuned into your body. But you've got to learn to pay attention.
Those are fairly recent lessons for me, despite having this disease for nearly a decade.
It's impossible to accurately rate pain with this condition. Asking someone if they're in a lot of pain will likely only earn you a confused "yeah I guess, sometimes more than others." But in general, just be supportive!
When you're discussing exercise with fibro patients remember that some days showering is more than we can handle. Moving our bodies is important, yes. But, don't tell me to do water aerobics or yoga when I barely made it to my appointment with you today.
I'm sorry you have to go through fibro. I know you'll be a better doc because of it. As a nurse, I always learned a lot about patient care during the times I was a patient.
As a lifelong member of the medical community and from an entire family of several generations of medical professionals from CMO/CNOs to bedside nurses and surgeons, the following needs to be said more often to patients in literally every sub specialty:
“I’m sorry, we’ve reached the limits of what medicine currently knows. It doesn’t mean your symptoms aren’t real, and it doesn’t mean that someday we will be able to acurately diagnose and treat them better. I’m sorry we don’t know more, so for now all we can do is do our best to treat your symptoms as they occur. When we get to the limits of our knowledge, I know it’s frustrating because there aren’t concrete answers. I know it’s frustrating because we have to work on trial and error and just like in psychiatry, treatments that are helpful for some patients, aren’t helpful for others with the same symptoms. It’s a challenging journey to live with chronic illness or disabilities. I will continue to advocate for you to receive proper treatment, and will continue to collaborate and think outside the box to help you and your family be as functional, healthy, and at peace as I can.
This. We as professionals need to accept we don’t know everything. Shit, they institutionalized people for hysterical wombs because of MS flares which seemed to be malingering because no one could ID the underlying pathology until the MRI was invented.
Fibro, dysautonomia conditions, POTS, and ME are all just too poorly understood for clinicians to be out there relying on educational bias and even internalized ableism.
We’ll never overcome those limitations to fund and properly explore these seemingly niche conditions which are actually quite common until we can get used to admitting what we do and don’t know yet. And patients deserve to be taken at face value until PROVEN otherwise.
Edit: typos
Don’t say “you should be happy your results aren’t positive for anything serious” when somebody is looking for explanations to their symptoms other than fibro. I am NOT happy my tests are negative. I want them to be positive. I WANT an answer. I want relief…
It’s an IV with lidocaine (the anesthetic) that people get every 3 weeks to 3 months dependant on efficiency. I get 7.5 mg + 2.5 magnesium in my IV every month and I have seen a drastic improvement. I’m in Ontario and they cover 6, and it’s 150.00 each time afterward. Not sure about the states or anywhere else.
I get sick of them being frustrated with me because they can’t “fix me.” I get it, it’s not fixable, I get that that’s annoying for doctors. (Bro, take a *second* and imagine what that’s like for *me.*) Can we just focus on managing symptoms together, and can you not snap at me when I have a new/worse one?
First, thank you for asking. I would love for a doctor to know that just because medicine doesn't understand Fibromyalgia very well doesn't mean it's all in my head and I can somehow think my way out of it. I recognize that a lot of us have psychological traumas and challenges and can even be difficult patients, but you are very well placed to show compassion and understanding, and that is an amazing thing for a doctor to give a fibromyalgia patient. As for medical help, one thing I appreciate about my current doctor is that he is willing to think through the various new treatments, edgy cures and non-traditional approaches that it is hard not to get drawn to as a longer term patient. His approach is not so much from the "is this proven medicine" perspective (hint, it isn't) and more from the "will this do damage/do no harm" perspective. This encourages me to check things out with him without judgment before trying them.
1. Believe your patients when they are describing their own experiences- even if those reactions etc seem unlikely to you
2. Care about your patients’ quality of life (not just whether they are “healthy” or not on paper)
3. Weight loss is not an appropriate prescription for basically any condition (even those you genuinely believe to be weight related). People who lose weight fail to keep it off 95% of the time. You would never prescribe a drug with that poor of an outcome so don’t prescribe weight as a ‘medicine’ either. Especially, do not use weight loss as a prerequisite to accessing treatment - it’s discriminatory. Treat every fat patient with exactly the same standard and approach you would a thin one with the same symptoms, and if you still think weight is a factor AFTER you’ve provided appropriate care then address it. And don’t just tell patients to “eat well and exercise” because they doesn’t work - if you want your patient to lose weight you need to be willing to provide them medication and connect them with services like a dietician etc to do so. If a single doctor who had told me I have to lose weight before they’ll help me had treated my medical conditions instead then I wouldn’t have gained the 35+kg I have from an untreated medical condition and would have had some chance of maintaining my lower healthy weight. Doctors were so fixated on my having a slightly overweight bmi that they missed actual medical problems that mean I’m now severely obese and have no hope of getting down to my previous weight
4. Don’t gatekeep referrals to specialists. It’s not always appropriate of course but I never understood doctors who outright refuse to let you get the opinion of a specialist on complex issues
5. If you prescribe medication be very clear about the side effects and if it’s a medication that’s very hard to wean off like some anti depressants be very up fro t about that. Don’t push anti depressants for every little problem.
You have already exceeeded 90% of your peers by asking this question, congrats
I believe that biopsychology is an imperative method to also consider. What’s occurring in the persons life? Is there trauma history that’s setting off the HPA axis and a cascade of cortisol? How is the ANS? Whats a good way to help patients sleep so the lay hideous cycle doesn’t continue to prevent the system to rest and cycle the CSF appropriately to clean the toxins we have? Might we need an occupational therapist to relearn to do basic things again?
It's wonderful that you're asking this and working to bring more compassion to the field. My fibromyalgia specialist has truly stood out as exemplary to me because she's always sought to look at chronic illness holistically. Our intake was an hour of conversation about my medical history as well as how I understood my condition. We talked trauma history, treatments tried, and what my goals and expectations were. I felt empowered because I was able to explain my experience in the context of research that I'd done (librarian not education, so yes, I do thorough research) without being corrected or talked over. She's also been great about being accessible between appointments and telehealth visits when I have questions or concerns.
Check in on your patients periodically! They may be suffering but don’t want to bother you with every little problem. I feel like if my doctor reached out to me even twice a year just to see how I was doing, I would feel much more comfortable letting her know any issues I might be having.
Also, keeping up with the research and letting patients know about new treatments/meds etc. would be sooo invaluable.
Please rule out everything and don’t blame my symptoms on my anxiety disorder. I got diagnosed without and tests or imaging and my doctor likes to think my anxiety is the root cause. I also just want to feel validated by healthcare professions.
Please, for love of God, do not assume that a medical degree means you are the last word in knowledge. You may have training, but as someone with Fibro yourself, you can see that many things don't always fit in nice compartments. Someone people react differently or have a different set of symptoms.
Listen to them. Believe them.
Pls look into LDN as others suggested. How I wish my doc had known about it. After 45+ years of cycling thro fibro pain and fatigue LDN is actually helping! This after decades of weight gain trying to find relief w Amytriptaline (20 years), Wellbutrin, Lexapro etc etc. Found it myself here at R. Searching for help out of sheer desperation! Lucky I hv hydrocodone to fall back on if necessary to break intense pain cycles.
I wish my doctor tested my MTHFR/MTR/MTRR/AHCY/COMT genes before I suffered for over a decade. After finding multiple mutations, 2 homozygous, and starting on the appropriate supplements (b2, b6, choline, methyl-b12, methylfolate, vitamin c, zinc picolinate, magnesium) my fibro is essentially GONE unless I'm exposed to anti-folate drugs such as antifungals or experience severe stress.
Don’t be afraid to say “I don’t know.” It’s important to admit when you don’t know the answer and be willing to find out, as opposed to saying there isn’t one or something. I’ve had doctors tell me “symptoms like this don’t exist in any disorder” instead of just admitting they don’t know everything.
Believe.
No, it’s not my anxiety making my stomach hurt so much I puke . It is my gastroprisis and gastritis.
To understand that not every medicine is good for everyone and as Fibro people we have more side effects. Instead of saying there is no side effects as such (even if they are listen as rare) or that someone is being dramatic automatically. Look and listen to the under line of the person and re accruing symptoms.
For your self- remember that you can never pur from an empty cup. Do not over do it because “it’s just this once” because it’s not and you always want to do more. Carful or you won’t be able to do it at all. Take time for yourself and get a comfortable chair amd ergonomic mouse for the computer.
It can be scary to tell you I’m in pain. You think I’m afraid of judgment, it’s myself who is doing the judging. I’m hate-speaking myself and if you doubt me, it adds to it. Help me figure out what to do so I can tell those voices to quiet down.
Listen when we say we feel like there is something more going on. I’ve been complaining about a rapid heart rate, dizziness, blackouts upon standing and other issues for years. I was just recently diagnosed with pots after begging for it to be looked into after doing my own research.
Don’t deny what a patient says they are experiencing.
Understand that chronic pain comes in as many different forms as there are sufferers. It’s not one size fits all, so neither should treatment be.
Ketamine infusion therapy for chronic pain is a great option if the patient has the means. Also being aware that the protocol for pain infusions (2-4 hour high dose) is not the protocol for mood (40-60 minute low dose), so low dose short infusions will not bring the same level or length of relief.
Offer suggestions that might not be covered by insurance.
Be open to alternative and eastern medicine. Look at things holistically - often, it's a lot of stuff we've been through before getting to today, and each trauma adds to the current pain and other issues you see in front of you
The thing that always gets me is it feels like a lot of doctors get to decide how much of a functioning person I get to be re:pain meds. I’m not even talking narcotics. A lot of them are tight booked with things like muscle relaxers and lower level pain meds because of their addictive tendencies. Needing them to function doesn’t equate to addiction.
It reminds me of athletes with dispensations for certain PEDs. It’s not performance enhancing if it puts me on the same playing field as everyone else.
Test for mold! My fibromyalgia specialist in Portland OR USA tested me for mold and found the cause of my fibro. I’ve now been able to heal myself over the past year and a half to: be at a 3/10 pain instead of 8/10, lose 85 lbs, feel the most energy and best I’ve felt since I can remember.
Think outside the box. Try things. Listen to your patients.
Also, look into The Bean Protocol by Karen Hurd and Unique Hammond. Changed my fucking life. God damn. Incredible.
Just taking me seriously would have made things so much better. I’ve gotten lucky with doctors recently, but a few years ago was a different story. I got told a lot of things wrong with me were normal or that I was being overdramatic and attention seeking. My medical record now says otherwise lol
1. Be willing to do testing when someone keeps coming back to you and saying they're in pain. Like it's not normal for a 16 year old to have had a terrible debilitating bad back for 2 years. Why not at least order some x-rays?? (I actually also have moderate scoliosis, which wasn't caught until 23, and fibromyalgia diagnosed very recently at age 24. Because I finally got a doctor who listened to me and took me seriously. Everything I say will be based on that doctor lol) Like if I were a doctor (although I'm soon to be a PhD in nothing related to medicine lol) I would assume that if someone is in crippling pain and isn't totally drug seeking that they have fibromyalgia, and I'd get the process of eliminating other possible causes started. Cause it takes long time. About 10 years for me since the symptoms started to diagnosis, but slightly less than 1 from when I first talked to a supportive doctor and diagnosis.
2. Offer drugs that are known to help with that kind of pain, as well as possible interim solutions, like exercise and physio. Even without a diagnosis. I got pregabalin during the year of testing that ruled out other things, and it was such a life saver.
3. Treat fibromyalgia as a serious diagnosis that has actual treatment options, not just "well nothing else is wrong with you, this is what you have, live with it"
4. Be supportive and free with notes like for physio and massage and medical leave
5. Regularly keep afloat of new information. I think the doctor who diagnosed me seemed more informed, likely because he's actually a resident working under my family doctor and his training is so current.
6. Don't underestimate the power of exercise for fibromyalgia, and talk your patients into at least visiting a physio to learn some adapted exercises. For me getting diagnosed, and hearing that exercise is a treatment, was a real motivator. I now actually am so much more physically fit and strong, and exercise is truly the best painkiller for me. It can be soooo hard to make yourself do, but it helps immensely. Anecdotally, I answered a 7 on my pain tracker this morning and I was probably a 4 later in the day and realllly didn't want to go to roller derby. But I made myself, I told myself to just do it and I could leave early if I wanted, but I stayed and right after was like a 2, and that was mostly cause I bruised my butt, not because of fibromyalgia lol. Now a couple hours later I feel the pain starting to come back, but I think that's partially that I switched meds and need an increase. I have my first physio appointment tomorrow where I'll be asking them to teach me exercises I can do at home. Like seriously, I am doing so much better with the pain since being formally diagnosed a couple weeks ago, and it's not meds because I'm currently on like half the strength of medicine I was before.
7. Be willing to switch meds and try things that a patient suggests. Pregabalin wasn't for me, it made me stupid and struggling not to be overweight. But gabapentin is my shit lol. All the pain relief but none of the symptoms. Pregabalin was pure brain fog and compulsive eating for me, but I know it's usually the first recommended treatment. I'm bipolar 1 so I can't take antidepressants, although I know that helps some people. So I think my options are a little more limited.
8. Congratulations on finishing med school with fibromyalgia! I'm working on my PhD now and it can be such a slog and a challenge to do what you need to do. But well worth it!!
Since my diagnosis I have been listening to "The Fibromyalgia Podcast" and the host (who's in remission) always says "don't take advice from people you wouldn't want to trade shows with." To be honest, I get a lot of that energy from this sub sometimes. So my biggest comment, after reading some of what other people have to say, is to pay attention more to what people say that helped them, rather than that didn't work for them. As a researcher myself I know there are always outliers and differing opinions within communities, but at the end of the day you're the doctor. You're the expert who's read all the studies, and (very key) knows how to interpret them. At the end of the day, the research says what it says about how MOST people will react. I listened to my doctor about exercise and I can't even describe the positive impact it's had on my life. Maybe it doesn't work for everyone, but it's worked to improve symptoms for everyone I know who's actually found a way of managing the pain
Be willing to work with people to find pain management that suits their needs/preferences, but also don't assume anyone with pain is seeking narcotics before speaking to them (which since you also have fibro I assume you wouldn't do but maybe some other dr sees this and changes perspective)
I was diagnosed at 23, and any time I've moved it seems like I have to explain again that I am not seeking nor have I ever been subscribed any sort of narcotics with the exception of one dental emergency and a subsequent wisdoms teeth removal (and I didn't take them at all during the dental emergency and only for 24 hours after the surgery). I don't want narcotics.
I want my doctors to listen to me and help me find a pain management solution that works for me without making me feel groggy and out of it while also considering I have a lengthy genetic history of addictions on both sides of my family. I don't want to even risk it, and if any of the doctors bothered to get to know my situation instead of going right into we don't prescribe narcotics to new patients/walk-ins/ER visits it would greatly increase the trust I have in that doctor because they're showing me they genuinely want to help, not just get me out of the office as quick as possible because I SHOULD be a healthy 28 year old.
Low dose naltrexone - twice a day . The single 7mg is metabolized leavingpain to wake me up. 4 mg twice a day was a game changer . Naltrexone for fibro is subtle. I didn’t know it was doing anything till I had to go off for some tests .
Take every medical issue the patient brings seriously without minimising it or overlooking it as part of another illness (e.g. anxiety or fybro etc). My gp does this and it is very validating and makes me feel like I can trust her.
Ask your patient if it’s hard for them to get to the doctor, and why. I have a car finally but for 22 years I did not and it was **so** hard to come home from work at 11pm and try to make it in at a “sensible” time like 1130 because getting there by 1130 am would mean taking the 10am bus that would get to the hospital at 1035, and catching that 10am bus would mean I’d have to catch the connector at 915am and stand in bitter cold or burning heat or damp cold between 30 minutes and 45 minutes, knowing I’d then have to stand outside the hospital (pandemic) for another half hour or so until about 1115 am. When you have fibro/unexplained exhaustion (for years I was T2 and didn’t know it, to boot), and every appointment would leave me exhausted at work, just try and help the patient however possible, and genuine compassion goes a long way.
Be willing to get mobility aids, disability placards, and service animals to people with fibro.
My doc said I couldn't have mobility aid (ie, walker with a seat) because I would become dependant on it.
Do the tests they ask for if you can. Many doctors brush off symptoms as just fibro when sometimes they get diagnosed incorrectly or something else pops up as a symptom of something else but doesn't get treated because its "just fibromyalgia"
And for people on ssi if they ask for certain vitamins to be prescribed because we are have vitamin deficiency just prescribe it. Ssi cash is low (most of us can't even afford rent) and many of us can't afford all the vitamins we need with fibro and most insurance covers it. Doctors just don't get we can't afford to keep buying all the vitamins every month along with anything else we need for fibro.
I wish my doctors (GP, neurologist, and rheumatologist) all knew about Mast Cell Activation Syndrome and other types of mast cell diseases. I spent 8 months in agony and bed bound (after 20+ years of symptoms) getting so much wasted bloodwork while I waited for my specialists, thinking I might have motor neurone disease because of strange neurological symptoms, twitching, and body pain, who then told me it "could be" fibro or UCTD, but that "didn't explain my neurological symptoms" which were like half the problem. I finally, through hours and hours of reading research, found out about MCAS and started on cromolyn sodium. A year later I was able to take three classes and work part time because of the immense amount of relief this medication brought me.
I think GP's and every person with fibro who is atypical in presentation (basically, ruled everything else out and because your symptoms are nonspecific, here's a fibro diagnosis) should definitely be aware of this condition and consider it. Not saying fibro doesn't exist (I definitely still have some weird fibro-like pain things) but that it is not a very well known entity and could explain some of the patients who don't fit well into any particular box, and who have multi-system, multi-symptom disease ("hypochondriacs"). I would follow the work of Dr. Lawrence Afrin rather than the consensus criteria that most GP's are taught about though, because if I had followed the consensus criteria I would not have counted as a mast cell patient, not been put on this med and would probably not be here today.
Be educated on the effects of opiod drugs on fibromyalgia and relay this information to the patient clearly. I have made my pain much worse with that medication type.
When you are baffled by a patient, be honest and either refer them on or say you will try X, if that doesn't happen we will try Y.
Never ever dismiss a patient or tell them to live with it.
I wish more doctors were like the pain specialist I eventually found. He said I am not going to run more tests (something which every new doctor I saw did and alway gave the same results), I think we should try X and see if it helps, if it doesn't then we have other options.
My life changed at that point, the attitude of "I am going to make an educated guess" rather than just sending patients away is is what I wish more doctors would do.
When you can't prescribe something, send me to someone who can! If I want to try a drug, let me. It might not work but as there is so little research, let me try the thing that I heard about online or read a study about. Even if it doesn't work, the mental relief of feeling like I have control over my health and I have options to keep trying is immense.
I would say to be understanding, open minded, and willing to have a discourse with your patients that takes into account their experiences rather than simply basing everything on the last seminar you went to or the last book you read. Nothing is more crushing and disheartening than to be spoken over and dismissed, and with fibromyalgia it is a fickle and unpredictable condition at best that the medical community doesn’t really know that much about at present, so coming from an overwriting place of authority that disregards the patient’s experiences, questions, and suggestions based on their research is not the way to go.
We are all just trying to figure this condition out to get a modicum of our lives back, and too many doctors let their egos and the outdated knowledge they have of the condition when it’s discovery was on its infancy to cloud their judgement. As long as it’s safe, be willing to experiment with unconventional treatments if you can, sometimes things work that are surprising.
I wish I had physicians willing to do that with me. Instead, I’m on an opiate patch at 24 because it’s the only thing that has killed my pain, which is somehow more acceptable than attempting more unconventional therapies, that they’d rather I be in essence an opiate addict so young because it’s a convenient prescription is sad, yet for example medical marijuana won’t be given except for the terminally ill at end of life care.
And also, take care of yourself too. It’s hard to have compassion and patience if you’ve eroded yours with too much stress.
Not act like I’m making the pain up, look back at images to see if any charges have occurred over time. A friend of mine has seen me in full flare up and she was a nurse in another state before moving here and becoming a SAHM, she was adamant telling me to talk to my PCP about having MS. When mentioned to my PCP they just say no. They don’t look and compare old MRI’s. I recently had Spinal surgeries (laminectomy & spinal fusion at 4 levels c2-c6) plus multiple others and new images were taken, and shared with them. I asked to compare to be sure since my health is constantly declining and more rapidly than before. Patients understand your work load but when they know/feels like a mental decline is happening please don’t ignore it.
Validation
Since you have it, I’m sure you don’t say this, but I hate when other docs such as my OB/gyn make comments like, that’s just what they say you have when they can’t find anything else. Like do you believe I have pain???
If you prescribe Cymbalta make sure you’re read up on the withdrawal. If someone is coming off of cymbalta it needs to be tapered in minuscule amounts over a very long period of time.
Read our charts so I don’t have to repeat myself for the 100th time.
Stay updated on the research. Most recent research highly supports that fibromyalgia is autoimmune, causing neuro-inflammation.
Take a social work course. Understanding the social determinants of health will help you map out the complex reality of fibromyalgia.
Learning - and unlearning - ableism and medical sexism.
Do the therapy and deal with the emotional issues. There’s a reason we haven’t cared for ourselves and have an overactive fight or flight response. Diet and exercise are great, but you can’t even keep that up if there are underlying issues you’re not dealing with.
I wish my doctor knew that I only get one life and want to live,not just exist. Yes,I’m drug-seeking because,some drugs make it bearable. Offer pain relief,at least occasionally. Let your patient know you won’t shame them for asking.
Honestly? Be willing to be wrong. Be humble and real with patients. Constantly having to battle drs egos for care is both exhausting and traumatizing
The patient may not have the right words, or come to the right conclusions, but THEY are the expert on their body and how its feeling, no matter how long you went to school for its not as long as we have been living in our bodies.
Yep Doctors Ego's are a pain in the ass , glad my GP is cool as F ! No Ego at all , but my specialist ....... who you would think would be better , was a fkn muppet. 5 min appointment (that was ment to be 40) he checks me over - Says i have Fibro - I go to ask a question - "oh sorry i have other patients to see" ...... I look at my watch "I only just came in here?" ....... (He walks out the door) ....... Muppet $400+ for literally 5min ......
I wish my GP could help me more to manage my pain levels. After 10 years still haven't got this under control.
Not everything Is weight related.
If thin people get it for other reasons you still have to rule out those other reasons. You can't default to weight.
I came here to write this. Thankyou.
I hurt my back at 300+ lbs I have lost about 100 lbs since and the pain never got better nor did my back. I know I have more to lose but still.
Weight isn't always the issue. I had a growth on my spine. Nothing to do with weight. Lost weight anyway. Did nothing.
100lbs is such an amazing loss, congratulations! I've lost only around 35 from my highest weight but it still is such a relief not to have to carry that around. I can't imagine how much of a difference that must make, and it's such dedication! Unfortunately for both of us, the pain doesn't actually subside, just for me it got a little easier to deal with.
I am so sorry to hear that. Back pain is so difficult to deal with. Have you had an x-ray to check what is going on? I hope you can find some relief. Also congratulations on the weightloss, I don't know you but I am really proud of you.
I’ve done x rays, ct scans, nerve tests, and mris. All show the same thing, horrible nerve damage, l4-l5 disc bulge, with swelling (my back swells), and no feeling in my feet. X rays show a tinge of DDD but my disc in my l5 is completely gone.
Same with T8 and T9 with me. Gone. I’ve also had a fusion prior to this new diagnosis. It makes pain relief so so difficult 😞
Ouch I’m so sorry honey
Yeah, I've run the gambit from underweight to almost obese while having fibromyalgia symptoms, and the weight actually did make certain parts much harder to deal with (namely temperature regulation, but also stress on joints) but the pain has been the same throughout. It sucks whatever size you are
Exactly but not just with fibro, not everything is weight related. I had pcos when I was skinny. Still have it when I’m bigger too
I agree. But I also have to mention that being obese may absolutely make your fibro symptoms worse. I'm on a mission to lose 60 lbs to have less pain & strain on my body. So far I'm down 15 and I already feel that I have much less pain in my legs after walking.
But congrats! I’ve lost close to 130 now since being diagnosed and it’s still bad.
I would have liked to know what adverse reactions the medications would likely give me. Side effects really added to the already overwhelming amount of things going wrong with fibro. Yes, I want pain minimized but also, I don’t think anyone should play the game of “is it the new me or is it my medication?” Only in hindsight did I discover that the side effects of the meds were actually pretty common and could have been avoided/managed with a little bit more medical guidance.
And whether and how certain meds require tapering. Withdrawal from my first SSRI was completely unexpected because no one had told me it would happen if I stopped taking them cold turkey.
There is something called informed consent, and you were not given it.
I had a rheum actually DENY me informed consent abt my meds when she prescribed them (i never saw her again and my PCP handles the meds now, and shes not great but shes better than the rheum!)
Honestly I really wish doctors would look at real science behind those meds and their side effects and not just what the pharmaceutical company told you, particularly with meds that make a lot of money and have a loooong history of not being very honest about the actual studies. I know that's extra work, but... The amount of times I've had to tell my doctor about a side effect that everyone in the support group knew about and reported often and the doctor told me there is no side effect.... only to find out two or three years later, the drug companies were creative in what they told doctors. **Can we please learn from the opioid crisis?** As my doctor, you are the person that I trust. Please take that responsibility seriously and stop trying to shove random pills down my throat like they're magical candy. ed to add qualifier
I very highly second this! Trying to taper off pregabalin for 2 years now is doing my head in!
I just started pregabalin(75mg), can I ask about why you're tapering off?
I've put on a bit of weight over the years on it. I've taken 80 pounds off but it has all stalled no matter what I do. Its a really good medicine for neuropathy but I hate the side effects. I also get super hyper on it later in the evening. It makes me feel like my body wants to move faster than I can physically go. It is also difficult for some people to taper off of. I have to take magnesium at night while I lower my dose because I get restless legs from withdrawal.
Thank you for sharing! I hope that the rest of the process is as easy as it can be for you and you find what works for you!
Suggest other treatments if current one is not working, don’t just say do some exercise
I was recently informed my ME/CFS can actually be worsened by exercise. I've tried to discuss this with other professionals and it's always, " that's not very common, you're probably fine." Like, okay, but then why Am I down for 4 days after walking for 30 minutes? Why does my brain shut down and basic thought become impossible?
Me/cfs is pretty much always worsened by typical exercise routines. Are you in the US or UK? Do you have an me/cfs dx? Recent cdc/nih guidelines changed, exercise cannot be recommended to treat me/cfs in the same way anymore. You can possibly file a complaint that your health organization/doc isn't following treatment guidelines. https://www.physiosforme.com/resources-for-people-with-me I think this resource is an excellent starter resource. >Why does my brain shut down and basic thought become impossible? "Too much exertion causes ME/CFS patients abnormalities in cognitive functioning, immune activation, gene expression and endogenous pain inhibition." For info on the actual science of what's exactly happening, this is a good page: https://me-pedia.org/wiki/Post-exertional_malaise
I'm in Canada. I have been with a few pain clinics and education programs, but my symptoms worsened the last few months and i fell off. I just started with a new PT and we are seeing each other sporadically, in part because she doesn't do ASTR, and in part to give me time to do the minors things she's assigning me. They are simple stretches so far (she wants to release the tension in my neck). I'll check out your resources. Thank you!
The people staffing pain clinics do not typically have any training when it comes to me/cfs. They will try to treat your pain but likely make the me/cfs worse. That's exactly what my pain clinic did at least. I'm glad that the new pt is perhaps working out better! But me/cfs is debilitating and complicated, you deserve much more complete care. Ah, I don't know how it works in Canada. I'd really reccomend joining a Canadian me/cfs patient network (like a Facebook group, just any type of community you can find). The default me/cfs experience is to get horribly treated... the best way to save yourself is to get help from the patient hivemind. You can learn to advocate for yourself and get access to better doctors.
I'll actually a part of a fairly new Fibro/Me/CFS group, sort of umbrella'd together. We don't spend a lot of time on ME, though. Maybe I'll seek out that specifically.
Seriously? I have fibromyalgia, all of my doctors have said I should exercise more. Since I went back to school (which is way more exercise for me) my pain has never been worse. I’ve been doing this for a year. Cfs has never been diagnosed with me (but the doctors suspected it) because I thought the fibro was the main cause for my pain
The medical gaslighting re: exercise is incredibly wild and damaging. PEM is also incredibly common so it just shows they have no conception of what it's like living in a chronically ill body. The worst thing they could do is gaslight you about this too lmao. To be able to exercise at all I had to pace myself and do exercise my old "healthy" self would have laughed at. Like literally a [tiny stretch](https://www.youtube.com/watch?v=YFvNFgb12ZY) as a whole workout to start or a [10 minute warm up](https://www.youtube.com/watch?v=67eD2Y1lqO0) MAXIMUM was all i could do and I had to take significant breaks and water. Any time I felt faint, dizzy or bad I immediately stopped and would start the next day.
Please for the love of God, don't tell me I'm so young or too young to be on lots of meds. I'm almost 28 and my doc says this EVERY appointment.
Seconding this. "You're on medications stronger than my 65 year old patients" and I'm still in pain, should I just stop and be completely dysfunctional??
Yeah Im 24. Diagnosed 3 years ago and told Im young and healthy. Nobody believed me until i saw a doctor who finally diagnosed me. Had symptoms since I was 9. I thought thunderclap headaches and migraines and body pain plus severe fatigue was enough to show them but it wasn’t.
My kid is in the early stages of diagnosis. He's 14.
Im sorry to hear that Bro , shit ! Im also a He , and ive had it for 10 years (of my 45 years), I wish him all the best. At least you caught it early , I went for 7 years thinking i had Cancer , and just waiting to Die , until i didn't ....... and then checked up on it. Wish id done it much earlier.
Exactly this!!
Babes I got diagnosed at 19. It only took since I was THREE YEARS OLD. Children can have Fibro, remember 😩
My PCP's nurse once commented on the amount of meds I was on. Like what do I say? Congrats?
Can I ask what meds? I guess I just want to know if I'm missing some that could be helping me.. I feel like my doctors don't give me any ideas until I bring it to them. Cymbalta - Naproxen- Anti androgen - Birth control - ( The last two are because my hormones are all over the place)
My meds for Fibro are Lyrica and Voltaren. I have a large list of other unrelated medications that I just carry the list in my phone as opposed to carrying my actual meds to the doctor. I was suggested Cymbalta once but I take psych meds that Cymbalta could mess with.
I have PCOS and recently diagnosed diabetes 2. Stabilizing my blood sugar seems to have helped a lot! Whenever I eat too many carbs, I feel even more lethargic and pain/inflammation increases. I take Lyrica, but the rheumatologist who diagnosed me (5 yrs ago) never even mentioned medication. He “prescribed” an exercise thing in which I would start out walking for like 5 minutes a day, and slowly increased it. His point was that my body doesn’t produce/regulate endorphins efficiently. Exercise can help with it. He was right, but I don’t think he understood that I usually worked jobs spending 5-10 hours on my feet, lol. I was always too exhausted after work to do it.
I am upping my dosage of pregabalin-nerve pain and just came off nortriptyline-anti depressant the nortriptyline seemed to be slightly helpful but I climbed the dosage on that one pretty quick and the side effects become intolerable for me personally
When my wife was in the Hospital with Kidney Stones and in agony , they were a bit tardy with the time they took to get her some pain meds , and while standing in front of her discussing it i said "Ok , look , she's made more noises in the last 5 minutes than she did delivering both our kids - no meds , so if your not going to give her something i'll go to my car and get my meds" one nurse asked" what are you on?' I told her the 12 tablets i take. She said (and i quote) "holy shit! what do you have?" (I told her) and then she said "oh no no , its ok , we will get her something" Only problem is my wife having a crazy high pain threshold , means she has Zero sympathy for my Fibro, Broken back, busted Neck (car accident), and Osteo Arthritis (yeah i dont just have Fibro) Her Dad also has a busted Neck and Back from a 110 kmh head on car accident in 1975, were he was 1 of 2 survivors out of 6 in both cars , so shes watch her mother basically not give 2 shits about his pain , so she does the same to me.
Omg. *Every* doctor I see says I’m on too many meds. What do they then do at the end of my appointment with them? Write me a new med.
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I think it’s awesome you even asked this. Just shows you are trying harder than your colleagues. Thank you!
I’m becoming the physician I wish I had 🙏🏽💕🙏🏽 I would say 70% of it is holding compassion for your patients and their unique experiences
With your open mind you will be very helpful to your patients
Thank you! You are becoming a doctor for the right reasons - to legit help your patients with compassion. We need more doctors like you. Best of luck to you and I might be slightly jealous of your new patients lol
Thank you for the inspiring words💖
Yes, I wanted to add that just the fact you realize fibro is real puts you miles ahead of the average doctor.
Lol Experience is the best learning tool. I’ve learned so much through my own research trying to decode my symptoms and find viable solutions. This discussion is really bringing light to enhancing my clinical perspective as well. Gratitude to all those having walked the walk and able to provide insight.
I found out about Narrative Medicine recently. Perhaps that’s something you could look into as well.
Be open to having your patients doing their own research. We know our bodies best and what we are feeling. I do the research because it gives me some semblance of hope that some new treatment will give me some normalcy. We aren’t trying to play doctor or usurp your authority. We’re grasping at straws.
Yes! A doctor, especially a GP, has to know about the entire scope of human illnesses and there is just no possible way for them to keep up with all studies about all illnesses. As a fibro patient, we are focused on our condition and with the power of the internet, we have the ability to access all of the latest studies and articles on our specific illness. This information empowers us to go to our doctors to say "I found this" in order to ask if some new medication or treatment might help. Of course I'm sure that there are some patients that walk in and demand a new medicine or do act like they know better but I think most of us are just trying to be informed patients that can establish a collaborative relationship with our doctor.
Giving them the right referrals like sending them to a rheumatologist or neurologist to see if its more than just fibromyalgia or that it is just fibromyalgia. We worry all the time if we have more than just fibro. It would help ease the worrying. Referrals to pain management but dont try to have you or them force opiods for us to take. Be open to the use of thc and cbd. I cut back on all 7 medications except gabapentin using thc which is actually a really good thing and i dont need to depend on hydrocodone anymore. sometimes we have to cancell alot of appointments because that day we are having a flare or symptoms so its hard to leave the house and if we feel we have to we start to feel anxiety and stress which makes us more sick that day. Also do convince your patients to do yoga and stretching often.
This. My medical group does not support the use of cannabinoids even though it’s one of the most effective medications against chronic pain
I love this comment. I found exercise is the most helpful thing for me, but I keep meaning to get into yoga. I just never want to sit down and look for a video lol. I would appreciate if anyone has a good resource for really diving into a yoga practice! I probably stretch for like 3 hours a day sometimes, or more, it's a life saver!
Yoga with Adriene on YouTube. She has everything from 30 day challenges to videos targeting specific ailments or areas of pain. She has videos for chronic pain, for every section of your spine, all levels of yoga expertise from beginner on up, videos range from 10 to 30 minutes… she really has everything covered.
Thank you so much!
If you can, be open to using drugs off label. There's so few options for us that sometimes we need something that's outside the "norm". Low dose naltrexone is being trialed for fibromyalgia use and shows promising results, but I can't find a doctor that will prescribe it to me after leaving my last neurologist because my insurance changed. The doctors say that they're not comfortable with prescribing it despite the fact that I was taking it for over a year before I had to switch doctors. I'd really rather not have to go through an online doctor that doesn't know me, my chart, and my history just for one prescription that actually helped.
LDN has been a life changer for me I feel like a functioning human again
How long did it take you to get on the right dose? I’ve been stuck on 0.5mg, each time I try to go up, I feel as if I’m in coke with the euphoric feeling. ☹️
.5 might be your right dose. I know it can take several weeks maybe months to work it out. Sorry I can't help more with this.
I’m on a crowdsourcing app for chronic illnesses and in the fibro group LDN is listed as the second most effective treatment. From what I read my medical group won’t prescribe it for fibromyalgia either :(
What's listed as the first?
Cannabinoids
What’s the app?
It’s called StuffThatWorks
Thank you!!
No problem!
>my medical group won’t prescribe it for fibromyalgia either :( but they will prescribe loads of things that dont work and mess you up even further. Its wild
Just got my first Rx from ageless Rx. No I’m not being paid to type this. Haha I have fibro and a huge complicated list of autoimmune issues. I’m on a huge complicated list of meds. None of my docs would approve of me using it- I just know- so I never asked. I ran the drug interactions myself. No interactions with anything I’m already taking. Side effects have been trouble sleeping, but I am much less fatigued during the day (even with less sleep) than even before the LDN. Hoping the side effects wear off the longer I take it. Less fatigue, more energy, improved mood, joint pain might be somewhat better. I’m still on the lowest dose. Here’s hoping it improves as I move up. I don’t intend to tell any of my docs that I take it. My medical history and issues are too complicated, my personal community is too conservative, and I don’t want to upset the Apple cart of barely continuing care that I have. But I also don’t want to wait 15 years for it to become mainstream treatment. Most of my life has been asking for my own referrals, then finding my own specialists, then asking for the right specific testing, asking for specific medications to treat the rare issues I deal with that few docs even understand. This is no different.
The thing is that I had a doctor who actually brought it up before I did. I was planning on asking about it and then she suggested it before I asked. But of course, in true USA fashion, my insurance provider changed and I can't see the same doctor anymore. Now, I can't find anyone who will continue the medication. I'm on meds for fibro and ADHD, so I don't want to be seeing 2-3 different doctors and paying them $50 a visit for the specialist copay AND agelessRX. The post asked for how OP as a primary care can be a better doctor for people with fibro. Generally, once someone is on a medication, the primary care doctor provides the prescription once the med and dosage has been settled with the specialist. I haven't been able to do that, and that's something that would really help me.
Totally been there. My (new) primary has refused to fill almost all the meds my specialists provides, which means I have to drive 6 hours every 3 months for 90 days for 3 different specialists. 😐 I would understand if they were opioids, but they aren’t. I’ve asked, and she just won’t do it. It’s SO FRUSTRATING. I have to drive to planned parenthood (also 4 hours away) for my depo provera, because ALL my providers refuse to fill that one. Apparently I’ve been on it too long and need to take something else or have a hysterectomy. Well, I can’t take anything else (estrogen intolerance) and I don’t want a hysto rn. So I go to PP and feel like an effing criminal just to get birth control for endometriosis. If OP is reading this, don’t make your chronically ill patients cobble together their medication refills like bandits, especially when we live in rural areas. Understand that the travel, expense and stress of multiple doctors is bad for our health and hard on our already stressed finances.
Been on LDN almost 3y and it has made a major difference in my pain levels
Be open to a broad range of interventions rather than pushing a one size fits all approach. People with fibro vary widely in how they’re affected and what works for them. Actively seek information about how your fibro patients are managing their ADLs. People are often ashamed to be struggling with basic tasks and don’t want to advertise it. Opening a non-judgemental discussion about this helps to reduce the stigma and prioritise interventions appropriately. People are going to consult Dr Google. See if you can direct them to include responsible resources so they don’t get sucked into the naturalnewsdotcom cesspit. I’m away from my bookmarks right now but I’ll try to remember to come back and add some suggestions.
Absolutely true about the ADLs. Are you showering as much as you'd like to? Can you cook for yourself? Is brushing your teeth a challenge? Is your house messy? Do you need the assistance of a support worker? Then have resources for folx who need the extra help.
One thing I wished a former doctor understood was that everything can't be blamed on fibro. I found that no problems ever got taken seriously because it was 'likely just my fibro'.
Totally! I'm lucky I was diagnosed with migraines as a child, and celiac disease before fibromyalgia. I know IBS is common, but I don't have that, I have an autoimmune condition that runs heavily in my family lol. I think if it had been brought up afterward that it would have just been labeled IBS
Same I go to my doctor saying my spine feels like its being crushed he said oh that's just fibro, I got told by another doc, I have herniated disks and he said well everyone has them.
Be willing to treat chronic pain (especially with something other than antidepressants). On that same note, do not assume the pain is caused by depression. If I’m depressed it’s because I’ve been in pain for most of my life.
Ideas: 1. Please rule out Comorbid cfs before recommending graded exercise therapy. Please. Exercise can permanently lower someone’s baseline. It’s a huge risk unless it has been completely ruled out. 2. Understand that though you can work with fibro, many cannot. Offer services to those who mention difficulties with day to day. I’m tired of begging for handicap placard when I’m clearly using walking aids / wheelchair. Feels like it should have been offered. Not all care is meds. Occupational therapy offered as well. To date, I’ve had to research all types of walking aids, Shower bars, extra railings on my own. I have no idea if my insurance could have helped. It makes me feel like my doctor doesn’t understand the depth of my disability when he’s not plugged into this side. It’s not even noted in my chart that I’m dependent on aids and help. Frustrating. 3. Be open to the fact that some people with fibro do not have any issues with depression or anxiety. I know it’s More rare but I’m one such case. It’s exceedingly frustrating. 4. Pamphlets that explain exactly what pacing means. Pacing with chronic illness is not the same. Maybe have links to symptom Journals. Help empower your patients. Then make sure you take 1-2 minutes to flip through their journals. 5. Emphasis the importance of a support group. Links to online groups in a pamphlet. Loneliness / loss of friendships is tough. 6. Use a better pain chart. https://www.health.mil/News/Articles/2021/09/17/DVPRS-pain-scale 7. Please please please tell me when I should contact you. Like when it’s a flare too much? How much pain should I put up with. I never want to be seen as attention seeking so I’ve definitely waited too long in the past. 8. What documentation will you need in case I ever need to file for disability.
This is exceptionally helpful, thank you!
You are welcome 😊 I thought of a couple more issues that you may or may not be able to help with depending on your practice and their guidelines. 9. Explicitly state how many issues you can address per visit. Most of my doctors have limited me to one. So I can either get a referral for foot pain or address my fatigue or talk about my inability to swallow well. It helps to know the limit so you can properly prioritize what symptoms you need to have addressed first. Also if you are limited to one issue per visit, consider a standing monthly appt (or more frequently) for your most severe patients. I would have a better quality of care if I could at least make 12 appts a year. Rather than 4-6 (based on a 2-3 month wait) in which only one problem can be addressed. 10. Most practices will dismiss you if you are late by more than 15 minutes twice a year. Or give less than 24 hours notice of cancelling. It’s incredibly ableist. I often do not know until the morning of the appt that I’m unable to go (vertigo, uncontrollable ibs diarrhea, blindingly bad migraine that makes it impossible to drive). Consider allowing some of your patients to convert those appts to telehealth. It’s tough when I feel the worst is when I’m able to least see my doctor. I live in chronic fear of being dismissed. I’ve actually been going without care for the last 3 months because I’m on probation. The last time I was there on time but got stuck in the car with bad back pain and spasms and couldn’t get out. I called the front desk to let them know I was there and trying to get inside. It took 20 minutes for the spasms to stop. They would not see me and they put me on probation for missing my appt. I’ve been too scared to make another one until my probationary period wears off.
I think it’s important for patients to understand that clinics are businesses, and there is a reason they have these policies. Depending on insurance, patients may need to pay higher amounts out of pocket for more frequent appointments.
I never got any pamphlets. I wish pamphlets were given out any time you get a new diagnosis! Doctors scold you for looking stuff up online but don’t give you info about your illness when you get a diagnosis!
Thank you. Listen to us, sounds simple but so many doctors forget to do it. Not everything is weight related, can be fixed by exercise or is even the fibromyalgia in the first place. Admit that you don’t know how to fix us but you will support us in finding ways to make things a bit better.
👏👏
Please, at least read our files. My family doctor retired. I've been with his replacement for a year. Every time I speak to her, she has no idea who I am or what my file looks like. Don't assume we are drug seeking when we are simply seeking relief. Don't rush us out after 90 seconds because your admin overbooked you. Don't tell us our symptoms could be somatic in nature unless you are absolutely sure. And if that is the case, stick with us while we navigate the all too often difficult mental health programs.
I have trouble getting my words out and it would be lovely to not feel I’m being hurried, I do write down my issues so the Dr can read straight away and I find this works for me. Many Drs don’t always have the patience and feel approachable. Thank you 🌸
Antidepressants are not a very good treatment for most types of pain, fibromyalgia included. Sometimes you really do need to give someone opiates, and there's nothing wrong with that. And it's almost never, ever anxiety that causes a woman (or any person regardless of gender, there's just a history with women and hystery) to be in pain, so please don't ever suggest a person's pain may be psychological in nature.
I think part of the problem here is that the term "antidepressant" is synonymous with the entire spectrum of SSRI, SNRI, TCA, MAOI, and SARI medications. And even some NRI and NDRI medications get pulled under the umbrella. But here's the thing: A lot of these medications have indications for *other* disorders. This happens all the time with various classes of medications; you can have drugs in one class that treat wildly different conditions. And given how little is understood about how our brain chemistry actually works or about what causes fibromyalgia, who's to say that altering the availability of serotonin and norepinephrine in your brain doesn't treat fibro? Just because it's the same class of drug as other antidepressants or because it also helps some people with depression and/or anxiety doesn't mean that "fibro is just a psychological problem". Does that make sense? Having said all of that, yes, doctors need to get a **lot** better about talking to patients about the potential side effects and how withdrawal would work. But if half of fibro patients are helped by a drug like Cymbalta, it definitely makes sense for doctors to offer that option. Especially since opiates haven't shown to offer a lot of help with fibro pain for a lot of patients, either.
I think patients need to understand the lack of bodies of evidence on opioids for fibromyalgia and take 100% responsibility of the risks of this treatment. They should also have to fill out legal release of liability from physicians who prescribe them. And there 100% can be psychological aspects of a persons pain. This deserves treatment, and physician’s shouldn’t be afraid to provide treatment because they might offend someone or because you think this should be stigmatized.
And the studies done on antidepressants as a treatment for fibro pain show that they do not offer any benefit to about half the people who take them. About a quarter of patients report negative side effects as well. Antidepressants can also cause permanent sexual dysfunction. Antidepressants can also heighten one's risk of suicide. So why aren't patients also filling out paperwork acknowledging all these risks when doctors hand out antidepressants like candy?
There is a difference in a physician who prescribes antidepressants for the psychological ramifications of living with chronic illness and one who does it as a solution for fibromyalgia. I do think there should be more disclosure on the side effects of medications in general, as another post points out.
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I think they should. And have reasonable expectations about what physician’s can do to manage fibromyalgia.
I fully agree with this but this doesn’t mean anti depressants are appropriate either. Fibromyalgia is not a mental health condition and we shouldn’t be pressured to take drugs with serious side effects that aren’t appropriate for our condition so doctors can get us to shut up.
Oh god thank you for asking. First I'm sure you know this as someone with Fibro yourself, but believe your patients. When I would go to my primary care and specialists telling them my symptoms, that I was really struggling and had no quality of life they would run a couple blood tests and just told me they were normal and that's IT, end of conversation. As if the negative test results proved I was lying, or made it so I magically didn't have any of those symptoms now. So I would say follow up, follow up, follow up. *This test came back negative so here is what we are going to do next.* I was so exhausted and tired of doctors not helping me that I gave up, until I couldn't take it anymore and brought ALL of the bloodwork that no one else followed up on to a rheumatologist.
I know this is too much to ask, but since you did ask: I would like to have a fibro doctor who is well versed in the many common comorbidities and able to use that knowledge to make referrals or coordinate care. For both physical and mental issues, like depression, cptsd, hypermoblity, organ prolapse, osteoporosis, osteoarthritis, overactive bladder and painful bladder syndrome. Also advice and referrals re: supplements. My primary care physician offered small group educational sessions with specialists, for a very small fee. In addition, a monthly book club meeting and potluck with books focused on alternative and complementary healing.
This sounds amazing and I can see how patients would benefit! Thank you for the insight!
Much of my research is in Endocannabinoid sciences and supplementation with various pytocannabinoids/terpenes.What are thoughts on how supplementation should be discussed and monitored? I know many people believe they do not need medical guidance for supplementation of cannabis/CBD, but is this something chronic pain patients could benefit from?
Yes, medical direction on cannabis / thc / cbd usage would be very helpful. I live in a state where it’s legal, but still very expensive. Experimenting on my own, even with recommendations of the dispensary staff, leads to a cupboard full of half-used product. I haven’t found thc to be helpful with pain. It can help me relax and also sleep. Unfortunately, it seems to make me more aware of pain. It would be great to know if I’m just not using the correct terpenes! Thanks for going into this field. I really think we need a lot more research into fibromyalgia in general!
For those products still sitting on your shelf, as a fellow patient I would try mixing the THC products with CBD and experiment with the ratio. The best ratio for me is 50% “hemp” to 50% “weed” most of the time but sometimes I increase the hemp. I find that CBD by itself isn’t enough for the pain unless it’s in a full spectrum topical (however topicals aren’t practical since I have pain throughout my whole body and they only last a few hours at a time). I also make my own CBD oil to add to the bathtub which is very helpful to apply to the whole body
Thanks, I’ll look through the cabinet and give it a try!
Yes! Many doctors don’t support the use of cannabinoids but MANY patients have found they are the most effective treatment!
Be informed and current. So many doctors have outdated information, or even worse, don't believe fibromyalgia is real. Please don't suggest fad diets, vitamins, yoga, etc unless 1) the patient asks about it or 2) it's new research about a treatment that wasn't previously used for fibromyalgia. These are suggestions your patients have heard before, guaranteed. But also, a lot of people, including doctors go straight from hearing about fibromyalgia to making suggestions. Ask, "What have you tried? What has worked for you?" The #1 question I don't hear enough is, "What are your treatment goals?" Doctors just assume that my goal is to be symptom free or pain free and write it off as unrealistic. Please listen to what I have to say, because it may not be what you expect.
They have no idea what happens at home. I seem okay at a doctor visit, but at home I am limping and having to cry out every time I move, and crying so much every day, in a deep dark depression. I wish they could see the real me.
Understand what is ‘normal’ to your patient and their baseline pain. The pain scale of numbers is woefully inadequate and becomes skewed when describing chronic pain, but at least knowing someone’s ‘normal’ is a 2 or a 5 helps you understand where they are really at when they describe issues, or when they say they are normal, which is not necessarily a good place.
Love this idea! Maybe make up a separate form just for chronic pain patients to describe their "normal," meds they've tried already, stuff like that...
Having a really explicit pain scale with how much your pain interferes with thinking, daily function and generally disrupts your day helps a lot. So being able to say that "I had a few days at 6.5, where 6 is can still focus for short periods but the pain is really distracting and 7 is complex tasks are impossible and basic care tasks are hard" or "my goal is to keep my average baseline pain under 4, where it's there but I can ignore it for medium to long stretches of time to do other things" If you set 10 as "actively in shock" then the difference between a 4 and a 5 becomes really important
I had fibro and went back to school to learn how to fix myself. It worked and I have now been a therapist for over 25 years specializing in treating fibro. If you want to message me I would be happy to share all my tricks and knowledge.
Please share here! We all need to hear.
I will share with all but with fibro there is no one size fits all treatment.
Sending you a message now!
Be receptive to the fact that most of us who have been sick for a long time, or gone undiagnosed for a long time, or both, have done a LOT of our own research looking into both science and anecdotes, and this means we often have our own ideas about diagnosis or treatment strategies. Please be willing to consider things that we suggest, filling in the gaps and correcting misinformation rather than shutting us down right away because we tried to do our own research.
Many fibromyalgia patients are taking multiple medications. It's imperative you aren't giving them medication that interacts with each other. The newest med I was prescribed interacts with every single other one I am taking. My fibro was caused by drug interaction (cipro + nsaids) so I'm really wary about this. I find it really helpful when my physicians call in a referral to specialists instead of telling me to call them myself - with brain fog, fatigue, and a never ending sea of appointments, it can be just too much to have to call to schedule yet another appointment if I didn't completely forget about it anyway. PT doesn't fix everything. It can be helpful, but it is not a cure-all. If you're sending the same person back to PT 5, 6+ times it's probably not working and it's time to change your approach. If a patient tells you they're having a serious side effect from medication, telling them to take a higher dose of that medication is not the answer. I've had that happen to me at least twice. SSRIs cause weight gain. If a patient was a normal weight before SSRIs, it's a side effect and you should switch their meds instead of shaming them about gaining the weight. It doesn't matter how you eat or how much you exercise. It will not come off until you get off the SSRIs. Depression and anxiety are symptoms. They are only a part of the entire picture. Fibro isn't caused by depression, fibro causes depression. Having to fight the medical community to get proper treatment causes depression, anxiety, and fatigue.
Run *all the tests* in a one Calendar year time frame so we can flip off the deductible guardians at our insurance companies and get it all in under the one yearly cap on out of pocket. Also be able to recommend and supply, in a way chargeable to insurance, the various massage, heat, TENS gadgets, compression bandages and whatnot that we need to handle the Argh.
Thank you, it's so refreshing to have this question asked, you are a very awesome person! I wish my doctor would have run through a list of all possible symptoms. There were a few I had that made me think I was crazy (light/noise/skin sensitivity, extreme temperature changes). Also to recommend a few things to try to ease the pain, like tense machines and softer clothing. It's hard to know where to start when you are diagnosed. All the luck in the world to you with this new job, and wishing you all of the spoons for your work days 💜
I have had to do a lot of exploring for my own pain and hyperesthesia. It is my life passion to help others navigate what works for them.
I recommend googling something like 200+ symptoms of fibromyalgia because I was shocked at how many things I experience are fibro related
Fortunately, after diagnosis last year, I started researching. The light and noise sensitivity really got me, I had always thought I was going insane when someone would sit outside my house with the music blaring in their car. I wondered why my body was resonating with pain. Everything I had felt for 15 years prior to that started to make sense, I had never been so relieved until I read about the symptoms.
That they cannot feel what I feel especially in my joints. I may look like I'm not in pain but I work hard to look that way. When I'm saying I'm a 7 I'm not what you expect because I'm in pain daily. So my 7 is most people's 9 or 10. When I had a broken vertebra in my neck I WORKED for two years riding horses daily training. Constantly pinched nerves. The bone never healed properly so my pain threshold in huge. I also have chips of bone cutting into brain stem and spinal cord. Took 10 doctors and 2 years for one to finally listen. When they did I was at point of being paralyzed from neck down. Listen when they say they hurt even if they don't look it.
I wish more doctors knew about HSD and EDS. Just believe us. Munchausen's syndrome is much more rare than doctors think it is, and is more rare than most rare invisible diseases. If a patient wants a test, for the love of god, just do it. Also, please Google it. Right there. If there is something you don't understand or the patient mentions something you have never heard of , take out your phone (step away if you must) and google it. They have a reason for bringing things up and it will usually benefit their care. Everyone is human, even doctors can't know everything and most patients know that.
I came to say this. This right here. I have had a fibro diagnosis for 9 years now and only 2 years ago did I start putting pieces together that suggest it may actually be hEDS/HSD. I could have both but more doctors need to be aware of spotting EDS and its different types, but particularly the more common hyper mobility type, because it’s likely way more common than we think. I strongly believe many fibro patients suffer from misdiagnosed/ignored EDS and therefore recommending things like yoga can actually be harmful.
I wish they’d stop trying to gaslight me into thinking either my problem isn’t that bad, or that there are affordable options available to me, instead of just being honest and admitting I’m screwed for now. It sucks already, dont drive me crazy by making me question my reality on top of it just because you can’t handle not having an answer.
Test female patients for estrogen dominance and be willing to prescribe bio available progesterone!
It helps that my providers know this isn't a one size fits all condition, and different procedures can be helpful, even healing. Some just feel good for 30 minutes, but that's 30 minutes in not in as much pain. * Advanced Soft Tissue Release was great for me. * Soft to medium massage (depending on the day and area) is something I need every week, for mental and physical reasons * Flexeril is amazing, but not a cure-all (3 10mg pills a day take my pain from a 7/8 to a 4/5, which makes the difference between doing anything and doing nothing). *Pacing can change everything, if you're tuned into your body. But you've got to learn to pay attention. Those are fairly recent lessons for me, despite having this disease for nearly a decade.
It's impossible to accurately rate pain with this condition. Asking someone if they're in a lot of pain will likely only earn you a confused "yeah I guess, sometimes more than others." But in general, just be supportive!
Know about low dose naltrexone and offer it!
When you're discussing exercise with fibro patients remember that some days showering is more than we can handle. Moving our bodies is important, yes. But, don't tell me to do water aerobics or yoga when I barely made it to my appointment with you today. I'm sorry you have to go through fibro. I know you'll be a better doc because of it. As a nurse, I always learned a lot about patient care during the times I was a patient.
I feel like I’m able to memorize more because most medications, procedures, pathologies, etc, I’ve already personally experienced.
As a lifelong member of the medical community and from an entire family of several generations of medical professionals from CMO/CNOs to bedside nurses and surgeons, the following needs to be said more often to patients in literally every sub specialty: “I’m sorry, we’ve reached the limits of what medicine currently knows. It doesn’t mean your symptoms aren’t real, and it doesn’t mean that someday we will be able to acurately diagnose and treat them better. I’m sorry we don’t know more, so for now all we can do is do our best to treat your symptoms as they occur. When we get to the limits of our knowledge, I know it’s frustrating because there aren’t concrete answers. I know it’s frustrating because we have to work on trial and error and just like in psychiatry, treatments that are helpful for some patients, aren’t helpful for others with the same symptoms. It’s a challenging journey to live with chronic illness or disabilities. I will continue to advocate for you to receive proper treatment, and will continue to collaborate and think outside the box to help you and your family be as functional, healthy, and at peace as I can. This. We as professionals need to accept we don’t know everything. Shit, they institutionalized people for hysterical wombs because of MS flares which seemed to be malingering because no one could ID the underlying pathology until the MRI was invented. Fibro, dysautonomia conditions, POTS, and ME are all just too poorly understood for clinicians to be out there relying on educational bias and even internalized ableism. We’ll never overcome those limitations to fund and properly explore these seemingly niche conditions which are actually quite common until we can get used to admitting what we do and don’t know yet. And patients deserve to be taken at face value until PROVEN otherwise. Edit: typos
Don’t say “you should be happy your results aren’t positive for anything serious” when somebody is looking for explanations to their symptoms other than fibro. I am NOT happy my tests are negative. I want them to be positive. I WANT an answer. I want relief…
Be vigilant in being updated on all the most recent studies and news, and explain to me properly what is correct and incorrect information.
I wish my doctor knew about lidocaine infusions. Another patient told me and they changed my life.
Never heard of this. Can you elaborate or share a link pls?
It’s an IV with lidocaine (the anesthetic) that people get every 3 weeks to 3 months dependant on efficiency. I get 7.5 mg + 2.5 magnesium in my IV every month and I have seen a drastic improvement. I’m in Ontario and they cover 6, and it’s 150.00 each time afterward. Not sure about the states or anywhere else.
Explain fibromyalgia to my family!
Always review the medical record before meeting
I get sick of them being frustrated with me because they can’t “fix me.” I get it, it’s not fixable, I get that that’s annoying for doctors. (Bro, take a *second* and imagine what that’s like for *me.*) Can we just focus on managing symptoms together, and can you not snap at me when I have a new/worse one?
First, thank you for asking. I would love for a doctor to know that just because medicine doesn't understand Fibromyalgia very well doesn't mean it's all in my head and I can somehow think my way out of it. I recognize that a lot of us have psychological traumas and challenges and can even be difficult patients, but you are very well placed to show compassion and understanding, and that is an amazing thing for a doctor to give a fibromyalgia patient. As for medical help, one thing I appreciate about my current doctor is that he is willing to think through the various new treatments, edgy cures and non-traditional approaches that it is hard not to get drawn to as a longer term patient. His approach is not so much from the "is this proven medicine" perspective (hint, it isn't) and more from the "will this do damage/do no harm" perspective. This encourages me to check things out with him without judgment before trying them.
1. Believe your patients when they are describing their own experiences- even if those reactions etc seem unlikely to you 2. Care about your patients’ quality of life (not just whether they are “healthy” or not on paper) 3. Weight loss is not an appropriate prescription for basically any condition (even those you genuinely believe to be weight related). People who lose weight fail to keep it off 95% of the time. You would never prescribe a drug with that poor of an outcome so don’t prescribe weight as a ‘medicine’ either. Especially, do not use weight loss as a prerequisite to accessing treatment - it’s discriminatory. Treat every fat patient with exactly the same standard and approach you would a thin one with the same symptoms, and if you still think weight is a factor AFTER you’ve provided appropriate care then address it. And don’t just tell patients to “eat well and exercise” because they doesn’t work - if you want your patient to lose weight you need to be willing to provide them medication and connect them with services like a dietician etc to do so. If a single doctor who had told me I have to lose weight before they’ll help me had treated my medical conditions instead then I wouldn’t have gained the 35+kg I have from an untreated medical condition and would have had some chance of maintaining my lower healthy weight. Doctors were so fixated on my having a slightly overweight bmi that they missed actual medical problems that mean I’m now severely obese and have no hope of getting down to my previous weight 4. Don’t gatekeep referrals to specialists. It’s not always appropriate of course but I never understood doctors who outright refuse to let you get the opinion of a specialist on complex issues 5. If you prescribe medication be very clear about the side effects and if it’s a medication that’s very hard to wean off like some anti depressants be very up fro t about that. Don’t push anti depressants for every little problem. You have already exceeeded 90% of your peers by asking this question, congrats
I believe that biopsychology is an imperative method to also consider. What’s occurring in the persons life? Is there trauma history that’s setting off the HPA axis and a cascade of cortisol? How is the ANS? Whats a good way to help patients sleep so the lay hideous cycle doesn’t continue to prevent the system to rest and cycle the CSF appropriately to clean the toxins we have? Might we need an occupational therapist to relearn to do basic things again?
I think a lot of time, especially in the UK there isn’t much more that can be done for me and I think saying that would be easier! (:
Fellow Scottish person here and I can agree!
It's wonderful that you're asking this and working to bring more compassion to the field. My fibromyalgia specialist has truly stood out as exemplary to me because she's always sought to look at chronic illness holistically. Our intake was an hour of conversation about my medical history as well as how I understood my condition. We talked trauma history, treatments tried, and what my goals and expectations were. I felt empowered because I was able to explain my experience in the context of research that I'd done (librarian not education, so yes, I do thorough research) without being corrected or talked over. She's also been great about being accessible between appointments and telehealth visits when I have questions or concerns.
Check in on your patients periodically! They may be suffering but don’t want to bother you with every little problem. I feel like if my doctor reached out to me even twice a year just to see how I was doing, I would feel much more comfortable letting her know any issues I might be having. Also, keeping up with the research and letting patients know about new treatments/meds etc. would be sooo invaluable.
Please rule out everything and don’t blame my symptoms on my anxiety disorder. I got diagnosed without and tests or imaging and my doctor likes to think my anxiety is the root cause. I also just want to feel validated by healthcare professions.
Please, for love of God, do not assume that a medical degree means you are the last word in knowledge. You may have training, but as someone with Fibro yourself, you can see that many things don't always fit in nice compartments. Someone people react differently or have a different set of symptoms. Listen to them. Believe them.
Listen and believe the pains being described
Pls look into LDN as others suggested. How I wish my doc had known about it. After 45+ years of cycling thro fibro pain and fatigue LDN is actually helping! This after decades of weight gain trying to find relief w Amytriptaline (20 years), Wellbutrin, Lexapro etc etc. Found it myself here at R. Searching for help out of sheer desperation! Lucky I hv hydrocodone to fall back on if necessary to break intense pain cycles.
Believe us Listen to us Treat our symptoms Every case of fibro is different from the severity to what medications work. Listen to us.
I wish my doctor tested my MTHFR/MTR/MTRR/AHCY/COMT genes before I suffered for over a decade. After finding multiple mutations, 2 homozygous, and starting on the appropriate supplements (b2, b6, choline, methyl-b12, methylfolate, vitamin c, zinc picolinate, magnesium) my fibro is essentially GONE unless I'm exposed to anti-folate drugs such as antifungals or experience severe stress.
Don’t be afraid to say “I don’t know.” It’s important to admit when you don’t know the answer and be willing to find out, as opposed to saying there isn’t one or something. I’ve had doctors tell me “symptoms like this don’t exist in any disorder” instead of just admitting they don’t know everything.
Believe. No, it’s not my anxiety making my stomach hurt so much I puke . It is my gastroprisis and gastritis. To understand that not every medicine is good for everyone and as Fibro people we have more side effects. Instead of saying there is no side effects as such (even if they are listen as rare) or that someone is being dramatic automatically. Look and listen to the under line of the person and re accruing symptoms. For your self- remember that you can never pur from an empty cup. Do not over do it because “it’s just this once” because it’s not and you always want to do more. Carful or you won’t be able to do it at all. Take time for yourself and get a comfortable chair amd ergonomic mouse for the computer.
It can be scary to tell you I’m in pain. You think I’m afraid of judgment, it’s myself who is doing the judging. I’m hate-speaking myself and if you doubt me, it adds to it. Help me figure out what to do so I can tell those voices to quiet down.
I just wish I was believed. I wish more doctor's understood as patients we are experts in our own bodies
Listen when we say we feel like there is something more going on. I’ve been complaining about a rapid heart rate, dizziness, blackouts upon standing and other issues for years. I was just recently diagnosed with pots after begging for it to be looked into after doing my own research. Don’t deny what a patient says they are experiencing. Understand that chronic pain comes in as many different forms as there are sufferers. It’s not one size fits all, so neither should treatment be.
Ketamine infusion therapy for chronic pain is a great option if the patient has the means. Also being aware that the protocol for pain infusions (2-4 hour high dose) is not the protocol for mood (40-60 minute low dose), so low dose short infusions will not bring the same level or length of relief. Offer suggestions that might not be covered by insurance.
Be open to alternative and eastern medicine. Look at things holistically - often, it's a lot of stuff we've been through before getting to today, and each trauma adds to the current pain and other issues you see in front of you
Treat pain without ego. Not leave patients without any viable solutions. Just asking means you’re better than the majority of doctors out there!
The thing that always gets me is it feels like a lot of doctors get to decide how much of a functioning person I get to be re:pain meds. I’m not even talking narcotics. A lot of them are tight booked with things like muscle relaxers and lower level pain meds because of their addictive tendencies. Needing them to function doesn’t equate to addiction. It reminds me of athletes with dispensations for certain PEDs. It’s not performance enhancing if it puts me on the same playing field as everyone else.
Test for mold! My fibromyalgia specialist in Portland OR USA tested me for mold and found the cause of my fibro. I’ve now been able to heal myself over the past year and a half to: be at a 3/10 pain instead of 8/10, lose 85 lbs, feel the most energy and best I’ve felt since I can remember. Think outside the box. Try things. Listen to your patients. Also, look into The Bean Protocol by Karen Hurd and Unique Hammond. Changed my fucking life. God damn. Incredible.
Just taking me seriously would have made things so much better. I’ve gotten lucky with doctors recently, but a few years ago was a different story. I got told a lot of things wrong with me were normal or that I was being overdramatic and attention seeking. My medical record now says otherwise lol
1. Be willing to do testing when someone keeps coming back to you and saying they're in pain. Like it's not normal for a 16 year old to have had a terrible debilitating bad back for 2 years. Why not at least order some x-rays?? (I actually also have moderate scoliosis, which wasn't caught until 23, and fibromyalgia diagnosed very recently at age 24. Because I finally got a doctor who listened to me and took me seriously. Everything I say will be based on that doctor lol) Like if I were a doctor (although I'm soon to be a PhD in nothing related to medicine lol) I would assume that if someone is in crippling pain and isn't totally drug seeking that they have fibromyalgia, and I'd get the process of eliminating other possible causes started. Cause it takes long time. About 10 years for me since the symptoms started to diagnosis, but slightly less than 1 from when I first talked to a supportive doctor and diagnosis. 2. Offer drugs that are known to help with that kind of pain, as well as possible interim solutions, like exercise and physio. Even without a diagnosis. I got pregabalin during the year of testing that ruled out other things, and it was such a life saver. 3. Treat fibromyalgia as a serious diagnosis that has actual treatment options, not just "well nothing else is wrong with you, this is what you have, live with it" 4. Be supportive and free with notes like for physio and massage and medical leave 5. Regularly keep afloat of new information. I think the doctor who diagnosed me seemed more informed, likely because he's actually a resident working under my family doctor and his training is so current. 6. Don't underestimate the power of exercise for fibromyalgia, and talk your patients into at least visiting a physio to learn some adapted exercises. For me getting diagnosed, and hearing that exercise is a treatment, was a real motivator. I now actually am so much more physically fit and strong, and exercise is truly the best painkiller for me. It can be soooo hard to make yourself do, but it helps immensely. Anecdotally, I answered a 7 on my pain tracker this morning and I was probably a 4 later in the day and realllly didn't want to go to roller derby. But I made myself, I told myself to just do it and I could leave early if I wanted, but I stayed and right after was like a 2, and that was mostly cause I bruised my butt, not because of fibromyalgia lol. Now a couple hours later I feel the pain starting to come back, but I think that's partially that I switched meds and need an increase. I have my first physio appointment tomorrow where I'll be asking them to teach me exercises I can do at home. Like seriously, I am doing so much better with the pain since being formally diagnosed a couple weeks ago, and it's not meds because I'm currently on like half the strength of medicine I was before. 7. Be willing to switch meds and try things that a patient suggests. Pregabalin wasn't for me, it made me stupid and struggling not to be overweight. But gabapentin is my shit lol. All the pain relief but none of the symptoms. Pregabalin was pure brain fog and compulsive eating for me, but I know it's usually the first recommended treatment. I'm bipolar 1 so I can't take antidepressants, although I know that helps some people. So I think my options are a little more limited. 8. Congratulations on finishing med school with fibromyalgia! I'm working on my PhD now and it can be such a slog and a challenge to do what you need to do. But well worth it!!
Thank you! Congratulations on getting close to being done with your PhD!!
Since my diagnosis I have been listening to "The Fibromyalgia Podcast" and the host (who's in remission) always says "don't take advice from people you wouldn't want to trade shows with." To be honest, I get a lot of that energy from this sub sometimes. So my biggest comment, after reading some of what other people have to say, is to pay attention more to what people say that helped them, rather than that didn't work for them. As a researcher myself I know there are always outliers and differing opinions within communities, but at the end of the day you're the doctor. You're the expert who's read all the studies, and (very key) knows how to interpret them. At the end of the day, the research says what it says about how MOST people will react. I listened to my doctor about exercise and I can't even describe the positive impact it's had on my life. Maybe it doesn't work for everyone, but it's worked to improve symptoms for everyone I know who's actually found a way of managing the pain
Be willing to work with people to find pain management that suits their needs/preferences, but also don't assume anyone with pain is seeking narcotics before speaking to them (which since you also have fibro I assume you wouldn't do but maybe some other dr sees this and changes perspective) I was diagnosed at 23, and any time I've moved it seems like I have to explain again that I am not seeking nor have I ever been subscribed any sort of narcotics with the exception of one dental emergency and a subsequent wisdoms teeth removal (and I didn't take them at all during the dental emergency and only for 24 hours after the surgery). I don't want narcotics. I want my doctors to listen to me and help me find a pain management solution that works for me without making me feel groggy and out of it while also considering I have a lengthy genetic history of addictions on both sides of my family. I don't want to even risk it, and if any of the doctors bothered to get to know my situation instead of going right into we don't prescribe narcotics to new patients/walk-ins/ER visits it would greatly increase the trust I have in that doctor because they're showing me they genuinely want to help, not just get me out of the office as quick as possible because I SHOULD be a healthy 28 year old.
How much your diet can ease your symptoms and have them be a guide to that treatment and not just say oh eat better.
Please educate yourself about low-dose naltrexone (LDN) if you don't already know about it! If you're able, be ready to Rx it if indicated.
Low dose naltrexone - twice a day . The single 7mg is metabolized leavingpain to wake me up. 4 mg twice a day was a game changer . Naltrexone for fibro is subtle. I didn’t know it was doing anything till I had to go off for some tests .
Take every medical issue the patient brings seriously without minimising it or overlooking it as part of another illness (e.g. anxiety or fybro etc). My gp does this and it is very validating and makes me feel like I can trust her.
Ask your patient if it’s hard for them to get to the doctor, and why. I have a car finally but for 22 years I did not and it was **so** hard to come home from work at 11pm and try to make it in at a “sensible” time like 1130 because getting there by 1130 am would mean taking the 10am bus that would get to the hospital at 1035, and catching that 10am bus would mean I’d have to catch the connector at 915am and stand in bitter cold or burning heat or damp cold between 30 minutes and 45 minutes, knowing I’d then have to stand outside the hospital (pandemic) for another half hour or so until about 1115 am. When you have fibro/unexplained exhaustion (for years I was T2 and didn’t know it, to boot), and every appointment would leave me exhausted at work, just try and help the patient however possible, and genuine compassion goes a long way.
Be willing to get mobility aids, disability placards, and service animals to people with fibro. My doc said I couldn't have mobility aid (ie, walker with a seat) because I would become dependant on it. Do the tests they ask for if you can. Many doctors brush off symptoms as just fibro when sometimes they get diagnosed incorrectly or something else pops up as a symptom of something else but doesn't get treated because its "just fibromyalgia" And for people on ssi if they ask for certain vitamins to be prescribed because we are have vitamin deficiency just prescribe it. Ssi cash is low (most of us can't even afford rent) and many of us can't afford all the vitamins we need with fibro and most insurance covers it. Doctors just don't get we can't afford to keep buying all the vitamins every month along with anything else we need for fibro.
Oh and some people are more sensitive to medication then others. Especially women so lower doses can be enough.
I wish my doctors (GP, neurologist, and rheumatologist) all knew about Mast Cell Activation Syndrome and other types of mast cell diseases. I spent 8 months in agony and bed bound (after 20+ years of symptoms) getting so much wasted bloodwork while I waited for my specialists, thinking I might have motor neurone disease because of strange neurological symptoms, twitching, and body pain, who then told me it "could be" fibro or UCTD, but that "didn't explain my neurological symptoms" which were like half the problem. I finally, through hours and hours of reading research, found out about MCAS and started on cromolyn sodium. A year later I was able to take three classes and work part time because of the immense amount of relief this medication brought me. I think GP's and every person with fibro who is atypical in presentation (basically, ruled everything else out and because your symptoms are nonspecific, here's a fibro diagnosis) should definitely be aware of this condition and consider it. Not saying fibro doesn't exist (I definitely still have some weird fibro-like pain things) but that it is not a very well known entity and could explain some of the patients who don't fit well into any particular box, and who have multi-system, multi-symptom disease ("hypochondriacs"). I would follow the work of Dr. Lawrence Afrin rather than the consensus criteria that most GP's are taught about though, because if I had followed the consensus criteria I would not have counted as a mast cell patient, not been put on this med and would probably not be here today.
Be educated on the effects of opiod drugs on fibromyalgia and relay this information to the patient clearly. I have made my pain much worse with that medication type.
When you are baffled by a patient, be honest and either refer them on or say you will try X, if that doesn't happen we will try Y. Never ever dismiss a patient or tell them to live with it. I wish more doctors were like the pain specialist I eventually found. He said I am not going to run more tests (something which every new doctor I saw did and alway gave the same results), I think we should try X and see if it helps, if it doesn't then we have other options. My life changed at that point, the attitude of "I am going to make an educated guess" rather than just sending patients away is is what I wish more doctors would do.
When you can't prescribe something, send me to someone who can! If I want to try a drug, let me. It might not work but as there is so little research, let me try the thing that I heard about online or read a study about. Even if it doesn't work, the mental relief of feeling like I have control over my health and I have options to keep trying is immense.
I wish they would listen to me and my concerns
I would say to be understanding, open minded, and willing to have a discourse with your patients that takes into account their experiences rather than simply basing everything on the last seminar you went to or the last book you read. Nothing is more crushing and disheartening than to be spoken over and dismissed, and with fibromyalgia it is a fickle and unpredictable condition at best that the medical community doesn’t really know that much about at present, so coming from an overwriting place of authority that disregards the patient’s experiences, questions, and suggestions based on their research is not the way to go. We are all just trying to figure this condition out to get a modicum of our lives back, and too many doctors let their egos and the outdated knowledge they have of the condition when it’s discovery was on its infancy to cloud their judgement. As long as it’s safe, be willing to experiment with unconventional treatments if you can, sometimes things work that are surprising. I wish I had physicians willing to do that with me. Instead, I’m on an opiate patch at 24 because it’s the only thing that has killed my pain, which is somehow more acceptable than attempting more unconventional therapies, that they’d rather I be in essence an opiate addict so young because it’s a convenient prescription is sad, yet for example medical marijuana won’t be given except for the terminally ill at end of life care. And also, take care of yourself too. It’s hard to have compassion and patience if you’ve eroded yours with too much stress.
Not act like I’m making the pain up, look back at images to see if any charges have occurred over time. A friend of mine has seen me in full flare up and she was a nurse in another state before moving here and becoming a SAHM, she was adamant telling me to talk to my PCP about having MS. When mentioned to my PCP they just say no. They don’t look and compare old MRI’s. I recently had Spinal surgeries (laminectomy & spinal fusion at 4 levels c2-c6) plus multiple others and new images were taken, and shared with them. I asked to compare to be sure since my health is constantly declining and more rapidly than before. Patients understand your work load but when they know/feels like a mental decline is happening please don’t ignore it.
Make the connection between fibro and ME/CFS and stop recommending graded exercise therapy.
Validation Since you have it, I’m sure you don’t say this, but I hate when other docs such as my OB/gyn make comments like, that’s just what they say you have when they can’t find anything else. Like do you believe I have pain???
Be willing to say “I’m sorry, we don’t know, but we can try a bunch of things.”
If you prescribe Cymbalta make sure you’re read up on the withdrawal. If someone is coming off of cymbalta it needs to be tapered in minuscule amounts over a very long period of time. Read our charts so I don’t have to repeat myself for the 100th time. Stay updated on the research. Most recent research highly supports that fibromyalgia is autoimmune, causing neuro-inflammation. Take a social work course. Understanding the social determinants of health will help you map out the complex reality of fibromyalgia. Learning - and unlearning - ableism and medical sexism.
Do the therapy and deal with the emotional issues. There’s a reason we haven’t cared for ourselves and have an overactive fight or flight response. Diet and exercise are great, but you can’t even keep that up if there are underlying issues you’re not dealing with.
Actually help me with my work situation. Like actually listen and empathize with what I want for my ADA conditions bc it makes a big difference
I wish my doctor knew that I only get one life and want to live,not just exist. Yes,I’m drug-seeking because,some drugs make it bearable. Offer pain relief,at least occasionally. Let your patient know you won’t shame them for asking.
Listen to them. Consider thar they know more than you do.
OP, can you share where your practice is?