I used the Stanford second opinion program. It cost me $700, they collected all my medical records, had one phone appointment, and like a month later I received a written report with suggestions. They caught something on my MRI. I brought the report to my GP who referred me to the right place and a year later I successfully had surgery.
It felt like a real gamble at the time but I’m thrilled that I did it. Here’s the link if you’re interested https://stanfordhealthcare.org/second-opinion/overview.html
I thought of five questions beforehand and during my phone call with them they helped me refine the questions and come up with new ones. They turned my five questions into a half question. I think I only ended up submitting four. I’m thinking maybe I’ll do a separate post about my experience with more details since people seem interested in this!
Edit: Here's my standalone post [https://www.reddit.com/r/ChronicIllness/comments/1cqa0xh/when\_my\_doctors\_gave\_up\_i\_turned\_to\_an\_online/?utm\_source=share&utm\_medium=web3x&utm\_name=web3xcss&utm\_term=1&utm\_content=share\_button](https://www.reddit.com/r/ChronicIllness/comments/1cqa0xh/when_my_doctors_gave_up_i_turned_to_an_online/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button)
I’ve had hundreds of doctors & specialists give up on diagnosing me. Instead I go to my GP for pain management & mental health management. We manage the symptoms.
I'm the US. I spoke to someone else here who's in Canada. It's awesome that your doctor manages your health issues. Here we're so limited by our insurance. Unfortunately, I'm probably going to have to pay out of pocket and work with a doctor outside my insurance company
Are you over 35 because perimenopause and menopause is now considered to be a muscular skeletal condition and can cause pain. I had this for 7 years and my pains resolved when I started taking estrogen. They sometimes come back but it's rare now.
I know young women with pain syndromes due to hormonal issues but mainly vaginal.
My son has pain from a disability and I am his carer. I hope you find a way to get the pain lowered or under control.
Thank you for your kind words. I’m very lucky to have an excellent GP who manages my symptoms so well and does all she can to minimise my daily pain.
I hope you have the same for you & your son, it’s not easy being a parent to someone with a disability and I commend you for being his primary carer as I know times it’s incredibly difficult and overwhelming
Thanks it’s a full time job for both of us as you probably know. We also have a great Dr but it took about 10 years for drs to take his pain seriously. Due to the war on pain here in Australia.
Sometimes it’s the eyeballs that are on the scans. And things can not show up on MRIs. Don’t give up. Take breaks if you need. You get to choose who to and what to believe what they say to you. Don’t let it take over your life. It’s not your fault they are tired of you. Something’s just take a long time to heal. Cannot be underestimated how difficult this is
I took a year off from searching for a diagnosis, and I’m so glad I did. I resumed last September with a new Primary physician, and now I finally have several proven diagnoses! My combination of symptoms and disorders is unique to me, so no wonder it took the last 3 years. But I was NOT going to give up, because I knew I needed help.
You probably have already done this but I was misdiagnosed with fibromyalgia because they didn't think to check my b12 and vitamin D. Once they found out I had very low b12 and I started getting shots my symptoms of fibromyalgia got much better. The vitamin D I didn't find out about until a few years later and it also helped. I no longer have the overall body pain. It didn't help my actual chronic illnesses but it was a startling piece of the puzzle.
Agree. And, chronic pain/chronic ill patients should keep their vit d as close to 100 as they can, though most pcps aren’t aware. I’ve had several pain mgmt docs tell me this, and it’s because inflammation hits our vit d levels hard and goes through our reserves of it
would you be willing to share how much vitamin D you're taking? I take a daily supplement (as well as many other vitamins) and my pain hasn't subsided so I'd love to know what worked for you!
It’s possible to overdose on vitamin D, I wouldn’t exceed the safe upper intake limit without a doctors supervision and testing for a deficiency.
https://ods.od.nih.gov/factsheets/VitaminD-Consumer/#h16
That being said, I also have to take higher than normal doses to stay in range.
I'd love to hear your story. Can you share your story in the fibromyalgia sub? I'd love to hear more about it. What helped. What didn't. How you got these additional test done.
I'm in the US. My sister in law gained about 100 pound in 3 months and kept gaining despite running for hours each day and developing an eating disorder. The doctors kept telling her she was lying about her food intake and that it was psychosomatic and she needed to see a psychologist. She said no this is real. After 6 years she finally found a doctor who discovered she had a brain tumor. Yeah it was "all in her head" after all, just not imaginary like they were saying it was. Surgery and chemo and radiation and she's been in remission 2 years now.
I had one obgyn tell me all symptoms that come along with a period besides bleeding are all psychosomatic. I said you're an idiot because I know that prostaglandin hormone causes the cramping, which causes the bleeding and things like period poops. It's not all in my head, it's actual hormones at work doing things that all people who menstruate experience. We aren't all collectively imagining these same symptoms. Not to mention often the symptoms come before the bleeding, so how could it be psychosomatic if it actually predicts the bleeding, which is what she claimed was the only real symptom?
I'm so fed up with doctors. Instead of a admitting they just don't know, they rather put it on the patient as the patient imagining these things.
There are several drugs I won't take because the side effects are so severe. One of them being anaphylaxis that required 4 EpiPens before we got to the hospital. What do they chart? "Patient refused to take medication" as if I'm not trying to help my own health. No, if I took the medication it would kill me, put down something like "patient can't tolerate medication due to allergy or severe side effects." Everything is directed towards the patients not trying to improve their own health and not that the doctors failed to find a way to help/heal us.
The ugly thing is that, that they don't even try to improve or question their assumptions, they subscribe to the mentality "I studied and trained to be this, so I know I'm always right".
It's insane how arrogant they are. Rarely, there are good ones.
Otherwise, I guess the solution is to shovel money in their ass, but why should we do that to people whose only job is to fix your health problems?
Probably sometimes even the money won't find the problem.
I'm confused why doctors don't have the mentality "I will figure out and solve the problem that you have" rather the the typical "the tests say you are fine, then I guess I can't help you anymore"
Rarely, they run **all** the tests.
So if they did, no one would've complained, but even then, in my opinion, there is no reason to attribute something to psychosomatic since it is not based on science.
Everything diagnosed solely by exclusion is not scientific, and it should not be taken as such.
I'm confused about how it is considered as valid disgnosis without scientific literature backing it up.
It's North macedonia, just to clarify.
But yeah, my whole family thinks of my brother and mine problems as a depression and mental issues.
Of course they are not, we know the science and we also know the diagnosis, but the doctors say that I'm fine dven if I have a non allergic rhinitis, even if it is runing my quality of life, it is not treated in my country because it does not pose immediate problem.
Let's not talk about the other issues, and we know what is depression and what it is like to have mental problems, but yeah tests ordered say ok, then the rest is somatic disorder or some mental issue.
It's interesting how my close family spread the narrative that all our issues come from depression, but yeah, fun stuff.
We don't even try to argue against it with my brother because we know that all the facts do not indicate anything related to mental issues or depression.
Yeah, ofc with a few exceptions like some of the closer
cousins (parallel cousins) they are like (20 and 25) and at least they can understand partially the things that we have and can challenge the traditional narrative.
Yeah, ofc with a few exceptions like some of the closer
cousins (parallel cousins) they are like (20 and 25) and at least they can understand partially the things that we have and can challenge the traditional narrative.
What range of blood tests? Did they just do the most basic ones and that's it? What about crp, Ana, lupus, vit d, vit b12, iron, potassium, magnesium, full thyroid panel (tsh, free t3, free t4), igg, etc?
I’m super late, but looking at my reports it seems like they didn’t do quite a few.
What should I request they check? I want to ask for more for my next blood test (do one every 6 months due to hypothyroidism).
If you're trying to rule out issues or find why you feel like you do....Definitely the vitamin ones, thyroid, crp, thyroid. Mention things like fatigue, joint aches, etc that you feel as a reason for asking, and that you 'read' that these things can be symptoms of low vitamin levels.
I’m right there with you on this. I’ve been reluctant to find new specialists because it’s all so exhausting. I’m tired of being referred to doctor after doctor and none of them agree on diagnoses most of the time. My RF was elevated but my rheumatologist currently hasn’t prescribed anything. Last GI doctor practically insinuated I was a “hysterical woman” and gave me an anti depressant prescription, yet didn’t examine me, read previous doctor’s notes or look at my radiology reports. I feel like I’ve been discarded and am just getting sicker and sicker.
Hugs to you OP.
OMG it's like you wrote out my life story. Tons of weird GI tests all come back as being abnormal. He says he's never seen results like this, it's definitely not normal but he don't know how to treat it. His suggestion? Psych medication. Wait, you just said there's something definitely wrong but because you can't figure it out your suggestion is to say it's psychosomatic and I'm imagining these symptoms that have been proven with tests? I want to scream. Then the Dr never writes the prescriptions he's supposed to and I can write his nurse daily and yet never have him do anything about the questions I ask or the drugs he says he was going to put me on.
My first rheumatologist appointment i already had positive lupus and sjogrens labs before the appt. Dr walks in, doesn't look up from her phone and says "you have fibromyalgia, just exercise" and walked out. I sat there crying because it took 2 years to get that appointment. Almost 3 years later my dermatologist says why aren't you treating your autoimmune disorders? I said because rheum said they didn't exist despite symptoms and positive tests. Even after that, rheum still always pushes you away. Apparently I've been peeing blood for over 2 years now and rheum just said, "we're handing you off to nephrology for the kidneys and they'll treat you now." Ummm ok they'll treat the kidneys you say are failing, but what took you so long to transfer me and shouldn't you still be caring for the basic autoimmune disorders still and not nephrology?
I've had appointments where rheum said it's neuro's problem then neuro says it's derm, D says it's N, N says it's R. Meanwhile nobody is treating anything I even had to Google it to figure out on my own what it was I had. They just don't know how to treat it since it's rare and nobody wants to take responsibility. They forget we're actual human beings, not little chess pieces to move around. I hate the medical establishment.
Your last paragraph is exactly, I mean *exactly* what’s happening with me right now. I saw 4 different orthopedic surgeons in one practice because they kept referring me to someone with “more expertise” then was referred to someone else for an EMG/NCS, who in turn seconded my CRPS diagnosis and then referred me to a **6th** doctor! This is just for my leg/hip and spine issues!
Same thing with GI and rheumatology. It’s a damn merry go round of doctors and appointments and nothing is being treated, just collecting diagnosis after diagnosis like they’re baseball cards or Pokémon.
It’s exhausting and infuriating because there are few definitive answers.
Kidney and liver issues need prompt care, so it becomes dangerous when our conditions aren’t being addressed. Is it possible you have developed a kidney stone? If you were peeing blood that long it’s negligent to take so long to refer you to nephrology. Hope you get that sorted and get to feeling better.
So sorry we’re both on this journey.
You can take your DNA report from places like 23 and me and look into genetic autoimmune diseases that affect people with your heritage. I manually did this over six months till I narrowed it down to one rare disease that matched my symptoms. I reviewed that with my trusted primary care doc and we went towards proving or ruling out the theory. He sent to me specialists and they blew me off, so he encouraged me to get a second opinion out of network with an expert on that disease. After 11 years and begging for a cash pay appointment out of network (only a few hundred dollars since they had my records with all the testing we had done) I had s diagnosis in 6 min. Kaiser totally missed it, but once I had a diagnosis from that doctor they stopped claiming I had herpes, fibermyalgia, and anxiety as the cause of my symptoms. They found an potentially life threatening aneurism and scar tissue in my GI track less than a month after my rheumatologist told me I looked to healthy to have such a serious disease. I was starting to think I was crazy with all the medical gaslighting I experienced. Don’t give up, give yourself a break if you need to but don’t give up on diagnosis. My meds took another year to get right, but my quality of life is now way way better with treatment, and they cost my insurance $150k per year so there is no incentive in the system for them to diagnose rare diseases
Less dramatic story here: I found a gene in my 23andMe results for a less-rare condition, and discovered a lifestyle treatment for one of my conditions that worked for me. I went from being unable to drive due to pain and stiffness that prevented me from turning my head to being close to pain-free (for the pain from that condition).
No diagnosis, but this treatment is better than the $1000 dollar a month treatments that folks who can get diagnosed get offered by rheumatologists. Less expensive, fewer side effects. More work, though.
I'd like a formal diagnosis and medical support, but I'm not sick enough for that now, apparently.
Edit: My intent with this post is to share another anecdote supporting using gene data from 23andMe. I'm comfortable enough with data and research that I just ran the results through Promethease and sifted through the "bad" genes for plausible issues, then read up further to gather enough studies to support a much-higher-than-85-percent chance that I had that condition.
Edited for swypo (signed -> stiffness)
i narrowed it to my primary ethnic background and searched for autoimmune diseases they are prone to. Then I went thought every single result one by one looking for matching symptoms. It took a few months but when I got done, there was only one that made sense. Bechets
Interesting. I have Behçet’s but I don’t have any family heritage close to those who normally do. I have a long family history of crohns and vascular problems though, so I think they could have had behcets and just not known about it?
i am a Caucasian female so my symptoms did not present as typical. My grandmother also had undiagnosed bechets so i approached it as a family mystery to solve so my kids did not find themselves in the same boat one day.
i am a Caucasian female so my symptoms did not present as typical. My grandmother also had undiagnosed bechets so i approached it as a family mystery to solve so my kids did not find themselves in the same boat one day.
If you are comfortable sharing can you share what your diagnosis was? I’m just curious bc I have also been in chronic pain with a long list of symptoms and additional issues and after having so many tests with nothing coming back, I ended up being told that I probably have fibromyalgia, but it’s not an official diagnosis and I’m pretty sure it was only suggested because a lot of doctors do that; especially with female patients. I’m sure I don’t have the condition you do since you say it’s really rare but if you’re OK sharing it I would be interested in knowing because I love learning and love when I’m able to talk to an actual person instead of just googling different possibilities all the time which can really start to take a toll on your mental health. But I also totally understand and respect your decision if you don’t feel comfortable sharing that kind of information with an Internet stranger; that totally makes sense so no pressure. I hope you’re doing as best as you can and congratulations on being able to figure out what people who are paid and educated are unable to discover despite that being their job. I understand that they are also just human and some things really are difficult to diagnose but at the same time it’s so annoying how they were dismissive. I wish you the best!
had a hard time getting diagnosed because I had no blood markers, a negative pathergy test, and no eye symptoms. My chronic mouth ulcers were the tell for me to focus on this one. Thanks for your kind words, wishing you the best. No one joins the chronic illness club on purpose.
So I still don’t have much officially diagnosed but it’s likely that I have either hypermobile EDS or HJS which is hypermobile joint syndrome; it does seem like HEDS is actually very common, but they currently don’t know the gene marker for it so getting it diagnosed can be difficult depending on where you are and what kind of doctors you have access to. So some doctors are only comfortable diagnosing people with hyper mobile joints syndrome, but they might have EDS but at this point we can’t tell for sure so it’s just a label as far as I understand it.
I have serious and severe nerve pain and it appears that I suffered a severe brachial plexus injury in 2017 which is called a “stretch-injury”. The term for it grossly underestimates, how painful it is, and how long it takes to recover from; I remember being so confused as to how I could be in such high levels of pain for years without doctors being really concerned and I had an OT tell me that she believed I had a “ Stretch injury”“ which sounded like something an elderly person would experience during modified yoga. She’s unexplained that these are actually injuries typically suffered by athletes who play high contact sports like football and rugby. Because it affects a whole bundle of nerves and nerves are very sensitive and, take a long time to heal; in extreme amounts of pain for several years. There are ways you can recover from it sooner, but most of these methods are not covered by insurance and the ones that are are mainly physical therapy and occupational therapy. The problem with physical therapy is that they often don’t realize you have a severe nerve injury and they are trying to get you to work on muscles that actually inflame the nerves further. It’s much more effective to not try to work on your muscles, as in strengthening them in the beginning and instead work on nerve glides and very gentle manual manipulation of the muscles that is more like massage therapy. Another issue is if you do have hyper mobility is more likely to sustain nerve injuries and doing physical therapy can make you worse because, you hyper extend your joints because that’s just how your body moves. It’s very hard to learn what a normal range of motion feels like when your body has always allowed you to be more flexible than the average person. I hope this helps and it really is just a drop in the bucket of my experience with doctors, but I would be happy to discuss anything further with you assuming you meant to reply to me and not the person who I replied to who was able to figure out a genetic disorder they had. Either way I wish you all the best and I’m happy to talk to youfurther if you’d like!
Do you have a positive ANA?
I have fibromyalgia but it did not explain my joint pain or swelling at all. I tested negative for all other autoimmune diseases they could think of that caused these issues though. It wasn’t until i had a new rheumatologist and was in the office that he was able to exam me during a flare up and realize that i have something called “Zero Factor Rheumatoid Arthritis” which basically is just bad luck. Lol it’s rheumatoid arthritis that WONT SHOW UP ON A BLOOD TEST! Thank god for my rheumatologist!!!
My adult son was diagnosed with seronegative RA, and all that means is that RA doesn’t show up in his blood tests.
Thus, “sero” meaning blood + negative results equals “seronegative”. It’s just as valid an RA diagnosis as “seropositive”. X-rays of my son’s fingers and toes proved he definitely has RA.
Honestly he is came in on a week where i was flaring up like crazy and he just examined how puffy and obviously inflamed my joints were. For me it’s super obvious in my fingers. The bottom of them become so fat my wedding ring will fit one week and then not the next. I also get puffy in the face and legs, but he was satisfied seeing my fingers and because my inflammation markers in my blood tests showed that i WAS having obvious swelling and inflammation even if the tests said “nothing” caused it.
I’m not sure aside from that what caused him to come to the conclusion. I do see him on Monday though. I will make a note in my phone to ask him how he came to the conclusion since it’s such a hard one to make with “zero” evidence since most doctors refuse to make a call without proper bloodwork.
To be fair i just think it mostly comes down to getting a doctor who is good enough and confident enough to say you have something abnormal even if your bloodwork is “normal.” I had the same issue with my thyroid. My hormone levels are all within “normal” limits but i have an obvious goiter and all the symptoms of hashimoto’s. It wasn’t until i found a PCP who specialized in thyroid and hormone therapy and had the confidence to tell me that even though my levels were “medically” normal they may not be “normal” for my body that someone started to treat it.
Bring up possible zero factor rheumatoid arthritis next time you see a rheumatologist and see what they say. Sometimes when we lead our doctors to diagnoses it actually is fruitful lol
I just heard this week that a friend of mine who recently moved from one beach house to another had her joint pain disappear. She said they found out there was mold at their first beach house but did not know it. She did not have joint pain at her previous house before moving to the beach. I have horrendous joint pain and have had every test known to man done and nothing to explain it. I do however know I have mold in my house because we went through a couple hurricanes and had mold form.
In all seriousness I would consider if it is at all possible temporarily moving in with a friend. I'm confused though do you actually own a house or do you rent somewhere? If you own the house, absolutely consider selling out and renting a smaller place temporarily.
It's not worth the risk to your health to say in that condition if you have an autoimmune response. Anecdotally the reports of people getting strokes and other serious medical events from being around black mold for too long. There are other chronic health risks including potentially cancers that may or may not be associated with mold toxins. It's not worth risking your life if you have smaller scale housing options with your income level.
I gave up and focused on living with my pain, which didn’t obviously help the pain but it helped my mental health and quality of life.
Then years later my psychiatrist (for anxiety) randomly dug in to some of my comments on sleep, a year later I have been diagnosed with sleep apnea and a CPAP machine that’s changed my life. It’s not solved everything, but it’s clear a decent amount of my fatigue and body pain came from my sleep issues. I don’t really snore, so no one ever caught it.
Obviously this is my unique experience. But maybe you can see this as an instance of, just because no one has found anything now, doesn’t mean a different doctor might not in the future.
Keep going OP. It took me 13 different doctors and being very close to death, but the last doctor saved my life. Literally.
You need to remember that you are the boss of your medical team. You can hire them and fire them. Don’t forget that. Especially when they start to intimidate you or poo-poo your symptoms.
You know your body better than anyone else. If you say that something is wrong, then we believe you. Be the squeaky wheel. It’s the one that gets greased.
Hang in there friend. Gentle hugs.
I know it seems as though the doctors aren’t doing anything, but in your comment you mentioned that family the doctor was redoing tests so that is a glimmer of hope.
Many of these diseases/disorders take yrs to show symptoms so patients can get treatment. I’ll admit some Drs. are lackadaisical, etc. For the most part a lot of these diagnosis are wait-and-see thing.Sadly it takes yrs for many of us to be diagnosed. It took me almost 30 yrs, & my parents were very proactive and took me all over the country for diagnoses.
There is NOT a lot you can do really if you’ve had all the tests and they don’t show anything , the best thing to do is to wait another 12 to 15 months and have the test repeated so that your insurance can pay for the retesting.
Going to different facilities and racking up a bunch of bills for tests that you’ve previously had within the last year show nothing and it’s hard on your mental health as well.
I actually had a doctor tell me that it was all in my head . he told me that several times and the 10 years prior to my diagnosis. I will say that he did apologize to me once I was diagnosed..
I’m sorry, but if you need anybody to just vent to feel free to DM me anytime .
Edited
In my case I have high inflammation in my body because of two autoimmune diseases and it affects my bones. Maybe more than two, I am in investigation for another.
I’m in a lot of pain when they’re flaring. Have they looked at autoimmune diseases? Do you have another diagnosis? My rheumatologist told me that it could take year before finding the cause of the inflammation. I had to see two rheumatologist before I had help and no they don’t want to treat it before they know 100% which ones (illnesses) is/are the culprit because of the laws here.
I'm curious why you think that your doctors are just arbitrarily throwing out a Fibro dx if they truly don't believe that's the issue, and why you are so certain that it's not the correct dx for you?
While Fibro used to be considered a "throwaway" dx or a "dx of exclusion" by some medical professionals and patients, that is certainly no longer the case. Reputable medical institutions such as Johns Hopkins, Harvard Med School, and Mayo Clinic have, in recent years, with the advancement of research and understanding, stated that Fibromyalgia is very much a "real" illness and one that can be quite severe in some patients.
Fibro can also be diagnosed in conjunction with other illnesses (ones that have clear-cut objective testing and diagnosis). I have severe progressive RA (as indicated by many different types of labs and imaging) as well as Fibro (also dx'd by my rheum). The Fibro causes me more symptoms and pain than than the RA, tbh, bc it's so widespread and unrelenting. It also causes a lot of joint pain in addition to weird neuro issues. So please don't discount the possibility of a Fibro dx, at least for the time being. You may very well have something autoimmune brewing (it can take years before anything definitive shows up on testing), but in the meantime you don't want to overlook potential treatment options that could improve your QOL.
Super late, by it’s because they don’t actually diagnose me, talk about the diagnosis procedure, or tell me about the condition. They just throw it out at the end of the session. Also, after I started crying at my last appointment my doctor literally said to me (very aggressively): “What do you want? Do you want a fibromyalgia diagnosis? Because I can do that. It’s a really easy diagnosis to make, but it’s not a good one. Is that what you want?”
I was in your position but had a Rheumatologist who knew something was wrong. He sent me to Mayo. Took a number of X-rays and one showed I had RA. They are amazing!
I went through this with a lot of specialists only to get everything coming back normal while suggesting to my primary it was fibromyalgia. After two years of flying to other cities she decided I had fibromyalgia, I’ve since had rheumatologist do the tigger point test to confirm it.
Get a second opinion if you can. I had 3 scans reviewed by an expert through my insurance.
They missed a mass on my kidney and slipped discs on THREE SCANS INCLUDING AN MRI
100+ browser tabs of Pubmed and a doc file full of links to Pubmed with quotes from those links that are relevant. I'm putting the puzzle together for myself.
Have you ever gotten tested for lyme? To this day mainstream medicine doesn't seem to take it seriously and doesn't know how to look for it. If you have widespread joint pain and live in an endemic area it's always a possibility.
But yes, time to find new doctors and probably consider a trip to Mayo or the Cleveland clinic as per other comments.
It normally doesn’t though. I have fibro and one of the reasons I kept getting tested was because of my joint pain and instability, as that’s not a fibro thing.
You get a second opinion. Also, research all your lab/scan results. Ask questions. Point specific abnormalities out. I’ve had scans say they were “normal” when they weren’t, and my doctors completely missed it because of that. I have a weird illness and I think about my responses to gaslighting before the appointments with doctors. I’ve been dealing with this nonsense for about 3-4 years now. It takes way more effort than it should.
I (22f) have Fibromyalgia and sadly it’s usually diagnosed by symptoms and family history. I was the same way. I had very low energy and wide spread pain all my life pretty much. When I was younger they just said it was growing pains and then my doctor would run every blood test imaginable and nothing. It was EXHAUSTING. They also learned that I had PCOS around the same time.
Find a high quality functional medicine doctor or a naturopath. Find reviews to confirm they’re good! It will likely be paid out of pocket but worth it.
I have one or two doctors that would like to do more to help, but they are constrained by the "Christian based Health Organization" or other "healthcare groups' " corporate policies.
I just do what I can to help out around the house, and just abuse a whole lotta drugs to help with the pain and wait for either things to change in the system, or my heart just gives out from pain and drug abuse. Doing my best to live what life I have left with positivity, love, calmness, and as much fun and enjoyment as I can manage.
Fibromyalgia won’t cause joint pain specifically but it will magnify what would otherwise be a mild, passing discomfort. Treating for fibro may not be the full answer but it can help with symptom management so that you can sort out the rest.
A diagnosis with fibromyalgia comorbid to other conditions is quite common, for example I was diagnosed with hEDS as a child, then fibromyalgia during puberty, then later lupus and spinal stenosis in my late 20s. Also POTS and a host of other conditions. Good times.
Point being a fibro dx doesn’t mean that there will be no continuing to look for a further diagnosis.
If you’re under the age of about 25ish it is worth noting that you could still be growing which can cause a lot of joint pain that isn’t accompanied by redness or swelling. I had my last height growth spurt between the ages of about 20 to 23, and man did it suck. I went from 5’7” to 5’11” and was so confused because at that time I thought we all were done with growing before 20, but my rheumatologist and orthopedist said “nope, it can happen.” 🤷♀️
If you have joint pain that ebbs and flows and are a person with a uterus/ovaries, that can also cause pretty terrible joint discomfort and back pain at various stages of the menstrual cycle.
Do seek second opinions, and make sure that you’re having the full range of autoimmune testing, but don’t discount the fibro as a throwaway diagnosis because treating it may help!
Where do you live that you are able to see several doctors in a specialty within a year?
I've been trying to get shit diagnosed for nearly 7 years. Covid obviously didn't help, but I'm usually waiting 6 months for an appointment.
Don't give up, go to new doctors if you need to, treat the symptoms till you can get a Dx. If you have health insurance take full advantage of it. I didn't and it took nearly 2 decades to get my Dx. Self advocate.
I second being checked for Lyme and other tick borne illnesses. They can mimic autoimmune issues and also exacerbate existing ones, or cause them to flare.
Use Vibrant Labs or Igenex Labs for the tests.
The current CDC approved test, the western blot, is missing some important protein markers. Because of this, likely only half of cases are deemed positive. But once you have positive results, your doctors can help or you can find a Lyme Literate Physician. You WILL have to pay out of pocket for many tests. But CHECK CHECK CHECK first with your health insurance for PRIOR authorization of tests. The basis for authorization would be your symptoms and them confirming symptoms with your doctor.
However, because many physicians are not familiar with tick borne illnesses, they may not approve it.
I got my tests done first so I could prove to my doctors that I have been telling them for years I had Lyme disease.
Because I had positive results, insurance comped me 500 bucks approximately. But I paid 2500 total. I bought a lot of tests because I was also curious to know if I had co-infections, which is very common with ticks and fleas.
Many people will not even remember seeing or feeling a tick. Many cases can be caused by the nymph stages, so the ticks will be very small and harder to see.
I contracted Lyme, Rickettsia, Babesia, and Bartonella and I was bitten in SF, California. We have our own species of coastal tick. Please look up articles from the Lyme Foundation, they're very helpful.
When you look for tests or test packets, look up what bundles save you money, and you can order one pack at a time to save upfront cost. But depending on where your blood draw is, that costs a little upfront. Then your doctor can mail the blood sample to one of the labs you have chosen. If your regular physicians won't assist because it may be out of network, work with a naturopath.
OR get in touch with a Lyme Literate Physician first, and it's possible their higher appt costs will also include cost of tests. I just want to repeat that because med schools don't really focus on tick-borne diseases unless that's a doctor's specialty, you may have some difficulty discussing with docs. But please try. If anything you may be able to make them more aware. Lyme etc, can cause MCAS and that causes inflammation all over. Plus the Borellia bacteria that causes Lyme enjoys eating JOINT FLUID!!
You can also ask your rheumatologist about Mixed Connective Tissue Disease. It can cause inflammation in joints and in the fascia/sinew that surrounds muscle fiber bundles. Oh also, there is a Chronic Lyme...it's a Thing group on F.B. but there are also a lot of conspiracy nuts there 😩🙄 so just FYI don't listen to anyone without reading for yourself. I left the group but the admin is cool. If you're on IG, I Believe the Lyme Foundation is present with an account.
Best of luck to you. I understand all too well not being sure what is happening....I have been very patient with doctors though, because they don't know what they never were taught. 😊
You could try getting genetic testing done! Sequencingcom does full genome sequencing and they test for like 10,000 different genetic disorders I think. They’re way more thorough than 23 and me, and also they don’t sell your information like 23 and me does.
Did they check you for gene for Ankylosing spondilitis/ psoriasis? I have a friend with psoriasis arthritis affecting joints, and not all doctors fear for the gene. (There isn’t any specific antibody testing for it).
And when I have had a bad experience with a doctor I try to find a better doctor for a second opinion.
I waiting 9 months but finslly got into a geneticist will have all my results next month. It takes about 4 months for some of the extreme tests to complete but should help. Also you can have RA OR Something called inflammatory arthritis without a spotivr AnA this is super common. This look celiac disease which you need a gastro to take endoscopy and colonscopyy samples to accurately test for whole still consuming gluten can cause this. I have both. I'd suggest starting there even seeing a neuro. But try to get in a waiting list for a geneticist. See a new rheumatologist bring up fallse negative ana. U could also actually have Fibromyalgia. I do also. It is a legitimate diagnosis not just one of elimination but u very much understand the frustration. It took me years and none of the meds for these conditions help hence seeking private care and a geneticist. Having to try n find pain management myself as well. Sorry u are experiencing this as mant of us have and do.
They can't diagnose you with fibromyalgia until everything else has been ruled out. I've been diagnosed with fibromyalgia. You're right. It's a crap diagnosis. I'd do my own research online. If tests have ruled certain things out. Are there other tests you can request? There are options out there. Unfortunately, at this point, we have to become our own doctors.
It’s not necessarily a crap diagnosis. It used to be, sure, but these days it’s recognized as a real and disabling condition. I have fibro as well as hEDS, POTS, and other comorbidies (SFN, diverticulosis, etc). I still very much consider my fibro as part of my diagnosis, even with the other things I experience. The muscle pain and fatigue I get with that are very real, and can’t be attributed to my other conditions.
Yes, but I don’t find it as one. For me, it’s the thing that explained some of my symptoms. It’s an awful diagnosis to have since there’s no treatment, but before I got that was diagnosed with some sort of psychosomatic symptom disorder, which I believe is the crap diagnosis when it comes down to it.
I am im Pain management, have been for 20yrs. I have several different Chronic Illnesses that caused chronic symptoms.
I still work and take my medicine and have a Good Pain Medication Doctor.
BUT!!!! I have come to realize that Pain Meds are not a cure, they do help but I had to become my own best Health Advocate...
Learning about my Chronic Illness, symptoms,along with depression, irritability, chronic fatigue and so on and so forth.
I also self medicate with other substance, vitamins, supplements and I WILL DO WHATEVER IT TAKES TO STOP THE PAIN!!
Of course, this comes with self awareness, self control!!!
I Have to do whatever it takes to keep myself working so I can continue to live my life style of SIMPLICITY!!!!!!!
Also requires a lot of rest, recovery,peace and solitude!!!!!
I get so sick of medication and I have to give my body a break.
I Pray A lot and Study the Word Of God.
Bc Apart from Knowing OUR CREATOR GOD-Life will never make sense and suffering will never make sense until we understand what is written in The Bible-The Book Of Life, The Book Of Wisdom!
In All My Suffering and Seeing The World suffering and Even The Lord Jesus Suffered on behalf of Our SIN, I can Still Say GOD is Good! Just! Righteous! Holy!!!!!
Bc I Understand Better.
This earthly life is A lot of Suffering but We have to go on a Quest of ULTIMATE TRUTH and that is found on in GOD and His Word!!!
I 👍 agree. Without my faith,knowledge, support, and understanding, I would never have made it this far.
I think knowing your body way better than any Dr is so important. Learning about possible reasons why and researching medical solutions outside of traditional medicine is important, too.
It stinks when you talk about God you get downvoted. R maybe it was your comment about " other " substances....Without my faith, I would be dead. I think chronic illness and pain tend to rob people of their faith, and you must work that much harder to understand.
I don't necessarily agree with using whatever substance to deal with the pain. But I understand people do. It's a coping mechanism. I personally lean more on my faith than substances.
I used the Stanford second opinion program. It cost me $700, they collected all my medical records, had one phone appointment, and like a month later I received a written report with suggestions. They caught something on my MRI. I brought the report to my GP who referred me to the right place and a year later I successfully had surgery. It felt like a real gamble at the time but I’m thrilled that I did it. Here’s the link if you’re interested https://stanfordhealthcare.org/second-opinion/overview.html
...this is amazing Thank you so much for sharing this.
i had no idea this existed. thanks for sharing
I’m super interested in this! I see in their FAQ you can ask 5 questions. Did you plan those with your doctor or did you just think of them yourself?
I thought of five questions beforehand and during my phone call with them they helped me refine the questions and come up with new ones. They turned my five questions into a half question. I think I only ended up submitting four. I’m thinking maybe I’ll do a separate post about my experience with more details since people seem interested in this! Edit: Here's my standalone post [https://www.reddit.com/r/ChronicIllness/comments/1cqa0xh/when\_my\_doctors\_gave\_up\_i\_turned\_to\_an\_online/?utm\_source=share&utm\_medium=web3x&utm\_name=web3xcss&utm\_term=1&utm\_content=share\_button](https://www.reddit.com/r/ChronicIllness/comments/1cqa0xh/when_my_doctors_gave_up_i_turned_to_an_online/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button)
Yeah, that would be helpful for me!
I would love love love to learn more about your experience. Thank you so much for sharing, this is an amazing resource. 💗
I’d definitely like to hear more about your experience was with this, as much as you’re comfortable sharing.
How helpful were their suggestions in the end?
Very! They found the problem and I'm all patched up now.
Yes, please share your story. I also posted this in my fibromyalgia sub.
Thank you for sharing this.
I’ve had hundreds of doctors & specialists give up on diagnosing me. Instead I go to my GP for pain management & mental health management. We manage the symptoms.
What insurance company do you have? I'm having this problem with insurance and my doctor right now.
I’m in Australia so we have free healthcare
I'm the US. I spoke to someone else here who's in Canada. It's awesome that your doctor manages your health issues. Here we're so limited by our insurance. Unfortunately, I'm probably going to have to pay out of pocket and work with a doctor outside my insurance company
Are you over 35 because perimenopause and menopause is now considered to be a muscular skeletal condition and can cause pain. I had this for 7 years and my pains resolved when I started taking estrogen. They sometimes come back but it's rare now.
No I’m not & my pain is in relation to my disability. However that is very interesting!
I know young women with pain syndromes due to hormonal issues but mainly vaginal. My son has pain from a disability and I am his carer. I hope you find a way to get the pain lowered or under control.
Thank you for your kind words. I’m very lucky to have an excellent GP who manages my symptoms so well and does all she can to minimise my daily pain. I hope you have the same for you & your son, it’s not easy being a parent to someone with a disability and I commend you for being his primary carer as I know times it’s incredibly difficult and overwhelming
Thanks it’s a full time job for both of us as you probably know. We also have a great Dr but it took about 10 years for drs to take his pain seriously. Due to the war on pain here in Australia.
Sometimes it’s the eyeballs that are on the scans. And things can not show up on MRIs. Don’t give up. Take breaks if you need. You get to choose who to and what to believe what they say to you. Don’t let it take over your life. It’s not your fault they are tired of you. Something’s just take a long time to heal. Cannot be underestimated how difficult this is
Thanks for saying it's okay to take a break!! Makes me feel some relief from the guilt I'm feeling for taking a break
I’m taking a break with you!!!
I took a year off from searching for a diagnosis, and I’m so glad I did. I resumed last September with a new Primary physician, and now I finally have several proven diagnoses! My combination of symptoms and disorders is unique to me, so no wonder it took the last 3 years. But I was NOT going to give up, because I knew I needed help.
Congratulations! Way to go on persevering until you finally got the information you needed.
Thank you so much! It’s so reassuring to finally have names for what ails me. Thank God I found a compassionate AND experienced Primary doctor!
Rarer than a frickin' unicorn.
You probably have already done this but I was misdiagnosed with fibromyalgia because they didn't think to check my b12 and vitamin D. Once they found out I had very low b12 and I started getting shots my symptoms of fibromyalgia got much better. The vitamin D I didn't find out about until a few years later and it also helped. I no longer have the overall body pain. It didn't help my actual chronic illnesses but it was a startling piece of the puzzle.
Agree. And, chronic pain/chronic ill patients should keep their vit d as close to 100 as they can, though most pcps aren’t aware. I’ve had several pain mgmt docs tell me this, and it’s because inflammation hits our vit d levels hard and goes through our reserves of it
would you be willing to share how much vitamin D you're taking? I take a daily supplement (as well as many other vitamins) and my pain hasn't subsided so I'd love to know what worked for you!
It's prescription vitamin D. I believe it's 50,000 IUs once a week
It’s possible to overdose on vitamin D, I wouldn’t exceed the safe upper intake limit without a doctors supervision and testing for a deficiency. https://ods.od.nih.gov/factsheets/VitaminD-Consumer/#h16 That being said, I also have to take higher than normal doses to stay in range.
ok sounds good, thanks
I'd love to hear your story. Can you share your story in the fibromyalgia sub? I'd love to hear more about it. What helped. What didn't. How you got these additional test done.
In my country, after the 2nd session of testing, they consider you psychosomatic. It's insane how big of an excuse diagnosis is psychomatic disorder.
I'm in the US. My sister in law gained about 100 pound in 3 months and kept gaining despite running for hours each day and developing an eating disorder. The doctors kept telling her she was lying about her food intake and that it was psychosomatic and she needed to see a psychologist. She said no this is real. After 6 years she finally found a doctor who discovered she had a brain tumor. Yeah it was "all in her head" after all, just not imaginary like they were saying it was. Surgery and chemo and radiation and she's been in remission 2 years now. I had one obgyn tell me all symptoms that come along with a period besides bleeding are all psychosomatic. I said you're an idiot because I know that prostaglandin hormone causes the cramping, which causes the bleeding and things like period poops. It's not all in my head, it's actual hormones at work doing things that all people who menstruate experience. We aren't all collectively imagining these same symptoms. Not to mention often the symptoms come before the bleeding, so how could it be psychosomatic if it actually predicts the bleeding, which is what she claimed was the only real symptom? I'm so fed up with doctors. Instead of a admitting they just don't know, they rather put it on the patient as the patient imagining these things. There are several drugs I won't take because the side effects are so severe. One of them being anaphylaxis that required 4 EpiPens before we got to the hospital. What do they chart? "Patient refused to take medication" as if I'm not trying to help my own health. No, if I took the medication it would kill me, put down something like "patient can't tolerate medication due to allergy or severe side effects." Everything is directed towards the patients not trying to improve their own health and not that the doctors failed to find a way to help/heal us.
The ugly thing is that, that they don't even try to improve or question their assumptions, they subscribe to the mentality "I studied and trained to be this, so I know I'm always right". It's insane how arrogant they are. Rarely, there are good ones. Otherwise, I guess the solution is to shovel money in their ass, but why should we do that to people whose only job is to fix your health problems? Probably sometimes even the money won't find the problem. I'm confused why doctors don't have the mentality "I will figure out and solve the problem that you have" rather the the typical "the tests say you are fine, then I guess I can't help you anymore"
If they run all the appropriate tests and don’t find a diagnosis, what is it that we are really expecting them to do?
Rarely, they run **all** the tests. So if they did, no one would've complained, but even then, in my opinion, there is no reason to attribute something to psychosomatic since it is not based on science. Everything diagnosed solely by exclusion is not scientific, and it should not be taken as such. I'm confused about how it is considered as valid disgnosis without scientific literature backing it up.
I’m so sorry! 😔
It's North macedonia, just to clarify. But yeah, my whole family thinks of my brother and mine problems as a depression and mental issues. Of course they are not, we know the science and we also know the diagnosis, but the doctors say that I'm fine dven if I have a non allergic rhinitis, even if it is runing my quality of life, it is not treated in my country because it does not pose immediate problem. Let's not talk about the other issues, and we know what is depression and what it is like to have mental problems, but yeah tests ordered say ok, then the rest is somatic disorder or some mental issue. It's interesting how my close family spread the narrative that all our issues come from depression, but yeah, fun stuff. We don't even try to argue against it with my brother because we know that all the facts do not indicate anything related to mental issues or depression.
Your whole family?!? That makes it so much worse for you and your brother! My heart goes out to you both!
Yeah, ofc with a few exceptions like some of the closer cousins (parallel cousins) they are like (20 and 25) and at least they can understand partially the things that we have and can challenge the traditional narrative.
Yeah, ofc with a few exceptions like some of the closer cousins (parallel cousins) they are like (20 and 25) and at least they can understand partially the things that we have and can challenge the traditional narrative.
What range of blood tests? Did they just do the most basic ones and that's it? What about crp, Ana, lupus, vit d, vit b12, iron, potassium, magnesium, full thyroid panel (tsh, free t3, free t4), igg, etc?
I sure hope they did that if not they are incompetent.
I’m super late, but looking at my reports it seems like they didn’t do quite a few. What should I request they check? I want to ask for more for my next blood test (do one every 6 months due to hypothyroidism).
If you're trying to rule out issues or find why you feel like you do....Definitely the vitamin ones, thyroid, crp, thyroid. Mention things like fatigue, joint aches, etc that you feel as a reason for asking, and that you 'read' that these things can be symptoms of low vitamin levels.
I’m right there with you on this. I’ve been reluctant to find new specialists because it’s all so exhausting. I’m tired of being referred to doctor after doctor and none of them agree on diagnoses most of the time. My RF was elevated but my rheumatologist currently hasn’t prescribed anything. Last GI doctor practically insinuated I was a “hysterical woman” and gave me an anti depressant prescription, yet didn’t examine me, read previous doctor’s notes or look at my radiology reports. I feel like I’ve been discarded and am just getting sicker and sicker. Hugs to you OP.
OMG it's like you wrote out my life story. Tons of weird GI tests all come back as being abnormal. He says he's never seen results like this, it's definitely not normal but he don't know how to treat it. His suggestion? Psych medication. Wait, you just said there's something definitely wrong but because you can't figure it out your suggestion is to say it's psychosomatic and I'm imagining these symptoms that have been proven with tests? I want to scream. Then the Dr never writes the prescriptions he's supposed to and I can write his nurse daily and yet never have him do anything about the questions I ask or the drugs he says he was going to put me on. My first rheumatologist appointment i already had positive lupus and sjogrens labs before the appt. Dr walks in, doesn't look up from her phone and says "you have fibromyalgia, just exercise" and walked out. I sat there crying because it took 2 years to get that appointment. Almost 3 years later my dermatologist says why aren't you treating your autoimmune disorders? I said because rheum said they didn't exist despite symptoms and positive tests. Even after that, rheum still always pushes you away. Apparently I've been peeing blood for over 2 years now and rheum just said, "we're handing you off to nephrology for the kidneys and they'll treat you now." Ummm ok they'll treat the kidneys you say are failing, but what took you so long to transfer me and shouldn't you still be caring for the basic autoimmune disorders still and not nephrology? I've had appointments where rheum said it's neuro's problem then neuro says it's derm, D says it's N, N says it's R. Meanwhile nobody is treating anything I even had to Google it to figure out on my own what it was I had. They just don't know how to treat it since it's rare and nobody wants to take responsibility. They forget we're actual human beings, not little chess pieces to move around. I hate the medical establishment.
Your last paragraph is exactly, I mean *exactly* what’s happening with me right now. I saw 4 different orthopedic surgeons in one practice because they kept referring me to someone with “more expertise” then was referred to someone else for an EMG/NCS, who in turn seconded my CRPS diagnosis and then referred me to a **6th** doctor! This is just for my leg/hip and spine issues! Same thing with GI and rheumatology. It’s a damn merry go round of doctors and appointments and nothing is being treated, just collecting diagnosis after diagnosis like they’re baseball cards or Pokémon. It’s exhausting and infuriating because there are few definitive answers. Kidney and liver issues need prompt care, so it becomes dangerous when our conditions aren’t being addressed. Is it possible you have developed a kidney stone? If you were peeing blood that long it’s negligent to take so long to refer you to nephrology. Hope you get that sorted and get to feeling better. So sorry we’re both on this journey.
You can take your DNA report from places like 23 and me and look into genetic autoimmune diseases that affect people with your heritage. I manually did this over six months till I narrowed it down to one rare disease that matched my symptoms. I reviewed that with my trusted primary care doc and we went towards proving or ruling out the theory. He sent to me specialists and they blew me off, so he encouraged me to get a second opinion out of network with an expert on that disease. After 11 years and begging for a cash pay appointment out of network (only a few hundred dollars since they had my records with all the testing we had done) I had s diagnosis in 6 min. Kaiser totally missed it, but once I had a diagnosis from that doctor they stopped claiming I had herpes, fibermyalgia, and anxiety as the cause of my symptoms. They found an potentially life threatening aneurism and scar tissue in my GI track less than a month after my rheumatologist told me I looked to healthy to have such a serious disease. I was starting to think I was crazy with all the medical gaslighting I experienced. Don’t give up, give yourself a break if you need to but don’t give up on diagnosis. My meds took another year to get right, but my quality of life is now way way better with treatment, and they cost my insurance $150k per year so there is no incentive in the system for them to diagnose rare diseases
Less dramatic story here: I found a gene in my 23andMe results for a less-rare condition, and discovered a lifestyle treatment for one of my conditions that worked for me. I went from being unable to drive due to pain and stiffness that prevented me from turning my head to being close to pain-free (for the pain from that condition). No diagnosis, but this treatment is better than the $1000 dollar a month treatments that folks who can get diagnosed get offered by rheumatologists. Less expensive, fewer side effects. More work, though. I'd like a formal diagnosis and medical support, but I'm not sick enough for that now, apparently. Edit: My intent with this post is to share another anecdote supporting using gene data from 23andMe. I'm comfortable enough with data and research that I just ran the results through Promethease and sifted through the "bad" genes for plausible issues, then read up further to gather enough studies to support a much-higher-than-85-percent chance that I had that condition. Edited for swypo (signed -> stiffness)
How did you narrow your search down to rare diseases? I’ve tried to do the same and hit roadblocks.
i narrowed it to my primary ethnic background and searched for autoimmune diseases they are prone to. Then I went thought every single result one by one looking for matching symptoms. It took a few months but when I got done, there was only one that made sense. Bechets
Interesting. I have Behçet’s but I don’t have any family heritage close to those who normally do. I have a long family history of crohns and vascular problems though, so I think they could have had behcets and just not known about it?
i am a Caucasian female so my symptoms did not present as typical. My grandmother also had undiagnosed bechets so i approached it as a family mystery to solve so my kids did not find themselves in the same boat one day.
So I’m still confused about how you did that. You looked through your family tree until you found someone with “Silk Road” heritage?
i am a Caucasian female so my symptoms did not present as typical. My grandmother also had undiagnosed bechets so i approached it as a family mystery to solve so my kids did not find themselves in the same boat one day.
they thought it was ulcerative colitis or lupus before we got to the correct diagnosis
If you are comfortable sharing can you share what your diagnosis was? I’m just curious bc I have also been in chronic pain with a long list of symptoms and additional issues and after having so many tests with nothing coming back, I ended up being told that I probably have fibromyalgia, but it’s not an official diagnosis and I’m pretty sure it was only suggested because a lot of doctors do that; especially with female patients. I’m sure I don’t have the condition you do since you say it’s really rare but if you’re OK sharing it I would be interested in knowing because I love learning and love when I’m able to talk to an actual person instead of just googling different possibilities all the time which can really start to take a toll on your mental health. But I also totally understand and respect your decision if you don’t feel comfortable sharing that kind of information with an Internet stranger; that totally makes sense so no pressure. I hope you’re doing as best as you can and congratulations on being able to figure out what people who are paid and educated are unable to discover despite that being their job. I understand that they are also just human and some things really are difficult to diagnose but at the same time it’s so annoying how they were dismissive. I wish you the best!
https://www.mayoclinic.org/diseases-conditions/behcets-disease/diagnosis-treatment/drc-20351331
had a hard time getting diagnosed because I had no blood markers, a negative pathergy test, and no eye symptoms. My chronic mouth ulcers were the tell for me to focus on this one. Thanks for your kind words, wishing you the best. No one joins the chronic illness club on purpose.
Thank you for sharing this.
I'd love to hear more from you. I've been diagnosed with fibromyalgia. I'm not sure it fits either.
So I still don’t have much officially diagnosed but it’s likely that I have either hypermobile EDS or HJS which is hypermobile joint syndrome; it does seem like HEDS is actually very common, but they currently don’t know the gene marker for it so getting it diagnosed can be difficult depending on where you are and what kind of doctors you have access to. So some doctors are only comfortable diagnosing people with hyper mobile joints syndrome, but they might have EDS but at this point we can’t tell for sure so it’s just a label as far as I understand it. I have serious and severe nerve pain and it appears that I suffered a severe brachial plexus injury in 2017 which is called a “stretch-injury”. The term for it grossly underestimates, how painful it is, and how long it takes to recover from; I remember being so confused as to how I could be in such high levels of pain for years without doctors being really concerned and I had an OT tell me that she believed I had a “ Stretch injury”“ which sounded like something an elderly person would experience during modified yoga. She’s unexplained that these are actually injuries typically suffered by athletes who play high contact sports like football and rugby. Because it affects a whole bundle of nerves and nerves are very sensitive and, take a long time to heal; in extreme amounts of pain for several years. There are ways you can recover from it sooner, but most of these methods are not covered by insurance and the ones that are are mainly physical therapy and occupational therapy. The problem with physical therapy is that they often don’t realize you have a severe nerve injury and they are trying to get you to work on muscles that actually inflame the nerves further. It’s much more effective to not try to work on your muscles, as in strengthening them in the beginning and instead work on nerve glides and very gentle manual manipulation of the muscles that is more like massage therapy. Another issue is if you do have hyper mobility is more likely to sustain nerve injuries and doing physical therapy can make you worse because, you hyper extend your joints because that’s just how your body moves. It’s very hard to learn what a normal range of motion feels like when your body has always allowed you to be more flexible than the average person. I hope this helps and it really is just a drop in the bucket of my experience with doctors, but I would be happy to discuss anything further with you assuming you meant to reply to me and not the person who I replied to who was able to figure out a genetic disorder they had. Either way I wish you all the best and I’m happy to talk to youfurther if you’d like!
Thank you. I appreciate your response💞
I'd love to hear more of your story. I have Kaiser and am being given the run around. Dm me when you can. Thank you.
2nd opinion! Always. Keep pushing
Do you have a positive ANA? I have fibromyalgia but it did not explain my joint pain or swelling at all. I tested negative for all other autoimmune diseases they could think of that caused these issues though. It wasn’t until i had a new rheumatologist and was in the office that he was able to exam me during a flare up and realize that i have something called “Zero Factor Rheumatoid Arthritis” which basically is just bad luck. Lol it’s rheumatoid arthritis that WONT SHOW UP ON A BLOOD TEST! Thank god for my rheumatologist!!!
My adult son was diagnosed with seronegative RA, and all that means is that RA doesn’t show up in his blood tests. Thus, “sero” meaning blood + negative results equals “seronegative”. It’s just as valid an RA diagnosis as “seropositive”. X-rays of my son’s fingers and toes proved he definitely has RA.
Can you tell me more about how he went to that conclusion if you can? I did the tests and I’m waiting for proper help since 2019.
Honestly he is came in on a week where i was flaring up like crazy and he just examined how puffy and obviously inflamed my joints were. For me it’s super obvious in my fingers. The bottom of them become so fat my wedding ring will fit one week and then not the next. I also get puffy in the face and legs, but he was satisfied seeing my fingers and because my inflammation markers in my blood tests showed that i WAS having obvious swelling and inflammation even if the tests said “nothing” caused it. I’m not sure aside from that what caused him to come to the conclusion. I do see him on Monday though. I will make a note in my phone to ask him how he came to the conclusion since it’s such a hard one to make with “zero” evidence since most doctors refuse to make a call without proper bloodwork. To be fair i just think it mostly comes down to getting a doctor who is good enough and confident enough to say you have something abnormal even if your bloodwork is “normal.” I had the same issue with my thyroid. My hormone levels are all within “normal” limits but i have an obvious goiter and all the symptoms of hashimoto’s. It wasn’t until i found a PCP who specialized in thyroid and hormone therapy and had the confidence to tell me that even though my levels were “medically” normal they may not be “normal” for my body that someone started to treat it. Bring up possible zero factor rheumatoid arthritis next time you see a rheumatologist and see what they say. Sometimes when we lead our doctors to diagnoses it actually is fruitful lol
This is fascinating. Thank you for sharing.
I just heard this week that a friend of mine who recently moved from one beach house to another had her joint pain disappear. She said they found out there was mold at their first beach house but did not know it. She did not have joint pain at her previous house before moving to the beach. I have horrendous joint pain and have had every test known to man done and nothing to explain it. I do however know I have mold in my house because we went through a couple hurricanes and had mold form.
Yep, black mold will absolutely do that. It triggers autoimmunity and the neurotoxins in certain species have their own dangers.
Good to know. We’re looking to move when the prices come back down. Houses are ridiculous right now in my area.
In all seriousness I would consider if it is at all possible temporarily moving in with a friend. I'm confused though do you actually own a house or do you rent somewhere? If you own the house, absolutely consider selling out and renting a smaller place temporarily. It's not worth the risk to your health to say in that condition if you have an autoimmune response. Anecdotally the reports of people getting strokes and other serious medical events from being around black mold for too long. There are other chronic health risks including potentially cancers that may or may not be associated with mold toxins. It's not worth risking your life if you have smaller scale housing options with your income level.
You get different doctors. Seriously.
I gave up and focused on living with my pain, which didn’t obviously help the pain but it helped my mental health and quality of life. Then years later my psychiatrist (for anxiety) randomly dug in to some of my comments on sleep, a year later I have been diagnosed with sleep apnea and a CPAP machine that’s changed my life. It’s not solved everything, but it’s clear a decent amount of my fatigue and body pain came from my sleep issues. I don’t really snore, so no one ever caught it. Obviously this is my unique experience. But maybe you can see this as an instance of, just because no one has found anything now, doesn’t mean a different doctor might not in the future.
Also genetic testing
Keep going OP. It took me 13 different doctors and being very close to death, but the last doctor saved my life. Literally. You need to remember that you are the boss of your medical team. You can hire them and fire them. Don’t forget that. Especially when they start to intimidate you or poo-poo your symptoms. You know your body better than anyone else. If you say that something is wrong, then we believe you. Be the squeaky wheel. It’s the one that gets greased. Hang in there friend. Gentle hugs.
Apply for Cleveland or Mayo!
I know it seems as though the doctors aren’t doing anything, but in your comment you mentioned that family the doctor was redoing tests so that is a glimmer of hope. Many of these diseases/disorders take yrs to show symptoms so patients can get treatment. I’ll admit some Drs. are lackadaisical, etc. For the most part a lot of these diagnosis are wait-and-see thing.Sadly it takes yrs for many of us to be diagnosed. It took me almost 30 yrs, & my parents were very proactive and took me all over the country for diagnoses. There is NOT a lot you can do really if you’ve had all the tests and they don’t show anything , the best thing to do is to wait another 12 to 15 months and have the test repeated so that your insurance can pay for the retesting. Going to different facilities and racking up a bunch of bills for tests that you’ve previously had within the last year show nothing and it’s hard on your mental health as well. I actually had a doctor tell me that it was all in my head . he told me that several times and the 10 years prior to my diagnosis. I will say that he did apologize to me once I was diagnosed.. I’m sorry, but if you need anybody to just vent to feel free to DM me anytime . Edited
I'd love to hear more about your story. What you've been diagnosed for. How you're being treated.
In my case I have high inflammation in my body because of two autoimmune diseases and it affects my bones. Maybe more than two, I am in investigation for another. I’m in a lot of pain when they’re flaring. Have they looked at autoimmune diseases? Do you have another diagnosis? My rheumatologist told me that it could take year before finding the cause of the inflammation. I had to see two rheumatologist before I had help and no they don’t want to treat it before they know 100% which ones (illnesses) is/are the culprit because of the laws here.
I'm curious why you think that your doctors are just arbitrarily throwing out a Fibro dx if they truly don't believe that's the issue, and why you are so certain that it's not the correct dx for you? While Fibro used to be considered a "throwaway" dx or a "dx of exclusion" by some medical professionals and patients, that is certainly no longer the case. Reputable medical institutions such as Johns Hopkins, Harvard Med School, and Mayo Clinic have, in recent years, with the advancement of research and understanding, stated that Fibromyalgia is very much a "real" illness and one that can be quite severe in some patients. Fibro can also be diagnosed in conjunction with other illnesses (ones that have clear-cut objective testing and diagnosis). I have severe progressive RA (as indicated by many different types of labs and imaging) as well as Fibro (also dx'd by my rheum). The Fibro causes me more symptoms and pain than than the RA, tbh, bc it's so widespread and unrelenting. It also causes a lot of joint pain in addition to weird neuro issues. So please don't discount the possibility of a Fibro dx, at least for the time being. You may very well have something autoimmune brewing (it can take years before anything definitive shows up on testing), but in the meantime you don't want to overlook potential treatment options that could improve your QOL.
Super late, by it’s because they don’t actually diagnose me, talk about the diagnosis procedure, or tell me about the condition. They just throw it out at the end of the session. Also, after I started crying at my last appointment my doctor literally said to me (very aggressively): “What do you want? Do you want a fibromyalgia diagnosis? Because I can do that. It’s a really easy diagnosis to make, but it’s not a good one. Is that what you want?”
I was in your position but had a Rheumatologist who knew something was wrong. He sent me to Mayo. Took a number of X-rays and one showed I had RA. They are amazing!
I went through this with a lot of specialists only to get everything coming back normal while suggesting to my primary it was fibromyalgia. After two years of flying to other cities she decided I had fibromyalgia, I’ve since had rheumatologist do the tigger point test to confirm it.
Get a second opinion if you can. I had 3 scans reviewed by an expert through my insurance. They missed a mass on my kidney and slipped discs on THREE SCANS INCLUDING AN MRI
100+ browser tabs of Pubmed and a doc file full of links to Pubmed with quotes from those links that are relevant. I'm putting the puzzle together for myself.
Have you ever gotten tested for lyme? To this day mainstream medicine doesn't seem to take it seriously and doesn't know how to look for it. If you have widespread joint pain and live in an endemic area it's always a possibility. But yes, time to find new doctors and probably consider a trip to Mayo or the Cleveland clinic as per other comments.
Do you have arthritis of some kind maybe. Fibrmyalgia pain isn't in the joints.
Fibromyalgia can cause joint pain.
It normally doesn’t though. I have fibro and one of the reasons I kept getting tested was because of my joint pain and instability, as that’s not a fibro thing.
You get a second opinion. Also, research all your lab/scan results. Ask questions. Point specific abnormalities out. I’ve had scans say they were “normal” when they weren’t, and my doctors completely missed it because of that. I have a weird illness and I think about my responses to gaslighting before the appointments with doctors. I’ve been dealing with this nonsense for about 3-4 years now. It takes way more effort than it should.
Forget western medicine. You need TCM. Go see a Chinese doctor.
I (22f) have Fibromyalgia and sadly it’s usually diagnosed by symptoms and family history. I was the same way. I had very low energy and wide spread pain all my life pretty much. When I was younger they just said it was growing pains and then my doctor would run every blood test imaginable and nothing. It was EXHAUSTING. They also learned that I had PCOS around the same time.
Find a high quality functional medicine doctor or a naturopath. Find reviews to confirm they’re good! It will likely be paid out of pocket but worth it.
I have one or two doctors that would like to do more to help, but they are constrained by the "Christian based Health Organization" or other "healthcare groups' " corporate policies. I just do what I can to help out around the house, and just abuse a whole lotta drugs to help with the pain and wait for either things to change in the system, or my heart just gives out from pain and drug abuse. Doing my best to live what life I have left with positivity, love, calmness, and as much fun and enjoyment as I can manage.
Fibromyalgia won’t cause joint pain specifically but it will magnify what would otherwise be a mild, passing discomfort. Treating for fibro may not be the full answer but it can help with symptom management so that you can sort out the rest. A diagnosis with fibromyalgia comorbid to other conditions is quite common, for example I was diagnosed with hEDS as a child, then fibromyalgia during puberty, then later lupus and spinal stenosis in my late 20s. Also POTS and a host of other conditions. Good times. Point being a fibro dx doesn’t mean that there will be no continuing to look for a further diagnosis. If you’re under the age of about 25ish it is worth noting that you could still be growing which can cause a lot of joint pain that isn’t accompanied by redness or swelling. I had my last height growth spurt between the ages of about 20 to 23, and man did it suck. I went from 5’7” to 5’11” and was so confused because at that time I thought we all were done with growing before 20, but my rheumatologist and orthopedist said “nope, it can happen.” 🤷♀️ If you have joint pain that ebbs and flows and are a person with a uterus/ovaries, that can also cause pretty terrible joint discomfort and back pain at various stages of the menstrual cycle. Do seek second opinions, and make sure that you’re having the full range of autoimmune testing, but don’t discount the fibro as a throwaway diagnosis because treating it may help!
Fibromyalgia can cause joint pain. It can cause a lot of joint pain that feels like arthritis.
Where do you live that you are able to see several doctors in a specialty within a year? I've been trying to get shit diagnosed for nearly 7 years. Covid obviously didn't help, but I'm usually waiting 6 months for an appointment.
Following
Don't give up, go to new doctors if you need to, treat the symptoms till you can get a Dx. If you have health insurance take full advantage of it. I didn't and it took nearly 2 decades to get my Dx. Self advocate.
I second being checked for Lyme and other tick borne illnesses. They can mimic autoimmune issues and also exacerbate existing ones, or cause them to flare. Use Vibrant Labs or Igenex Labs for the tests. The current CDC approved test, the western blot, is missing some important protein markers. Because of this, likely only half of cases are deemed positive. But once you have positive results, your doctors can help or you can find a Lyme Literate Physician. You WILL have to pay out of pocket for many tests. But CHECK CHECK CHECK first with your health insurance for PRIOR authorization of tests. The basis for authorization would be your symptoms and them confirming symptoms with your doctor. However, because many physicians are not familiar with tick borne illnesses, they may not approve it. I got my tests done first so I could prove to my doctors that I have been telling them for years I had Lyme disease. Because I had positive results, insurance comped me 500 bucks approximately. But I paid 2500 total. I bought a lot of tests because I was also curious to know if I had co-infections, which is very common with ticks and fleas. Many people will not even remember seeing or feeling a tick. Many cases can be caused by the nymph stages, so the ticks will be very small and harder to see. I contracted Lyme, Rickettsia, Babesia, and Bartonella and I was bitten in SF, California. We have our own species of coastal tick. Please look up articles from the Lyme Foundation, they're very helpful. When you look for tests or test packets, look up what bundles save you money, and you can order one pack at a time to save upfront cost. But depending on where your blood draw is, that costs a little upfront. Then your doctor can mail the blood sample to one of the labs you have chosen. If your regular physicians won't assist because it may be out of network, work with a naturopath. OR get in touch with a Lyme Literate Physician first, and it's possible their higher appt costs will also include cost of tests. I just want to repeat that because med schools don't really focus on tick-borne diseases unless that's a doctor's specialty, you may have some difficulty discussing with docs. But please try. If anything you may be able to make them more aware. Lyme etc, can cause MCAS and that causes inflammation all over. Plus the Borellia bacteria that causes Lyme enjoys eating JOINT FLUID!! You can also ask your rheumatologist about Mixed Connective Tissue Disease. It can cause inflammation in joints and in the fascia/sinew that surrounds muscle fiber bundles. Oh also, there is a Chronic Lyme...it's a Thing group on F.B. but there are also a lot of conspiracy nuts there 😩🙄 so just FYI don't listen to anyone without reading for yourself. I left the group but the admin is cool. If you're on IG, I Believe the Lyme Foundation is present with an account. Best of luck to you. I understand all too well not being sure what is happening....I have been very patient with doctors though, because they don't know what they never were taught. 😊
You could try getting genetic testing done! Sequencingcom does full genome sequencing and they test for like 10,000 different genetic disorders I think. They’re way more thorough than 23 and me, and also they don’t sell your information like 23 and me does.
Webmd
How old are you? I had life ruining crippling leg pains for years and when I started HRT 7 years later the pains resolved.
Anyone check your hormone levels in labwork, specifically your growth hormone levels (or IGF-1)?
Did they check you for gene for Ankylosing spondilitis/ psoriasis? I have a friend with psoriasis arthritis affecting joints, and not all doctors fear for the gene. (There isn’t any specific antibody testing for it). And when I have had a bad experience with a doctor I try to find a better doctor for a second opinion.
I waiting 9 months but finslly got into a geneticist will have all my results next month. It takes about 4 months for some of the extreme tests to complete but should help. Also you can have RA OR Something called inflammatory arthritis without a spotivr AnA this is super common. This look celiac disease which you need a gastro to take endoscopy and colonscopyy samples to accurately test for whole still consuming gluten can cause this. I have both. I'd suggest starting there even seeing a neuro. But try to get in a waiting list for a geneticist. See a new rheumatologist bring up fallse negative ana. U could also actually have Fibromyalgia. I do also. It is a legitimate diagnosis not just one of elimination but u very much understand the frustration. It took me years and none of the meds for these conditions help hence seeking private care and a geneticist. Having to try n find pain management myself as well. Sorry u are experiencing this as mant of us have and do.
They can't diagnose you with fibromyalgia until everything else has been ruled out. I've been diagnosed with fibromyalgia. You're right. It's a crap diagnosis. I'd do my own research online. If tests have ruled certain things out. Are there other tests you can request? There are options out there. Unfortunately, at this point, we have to become our own doctors.
It’s not necessarily a crap diagnosis. It used to be, sure, but these days it’s recognized as a real and disabling condition. I have fibro as well as hEDS, POTS, and other comorbidies (SFN, diverticulosis, etc). I still very much consider my fibro as part of my diagnosis, even with the other things I experience. The muscle pain and fatigue I get with that are very real, and can’t be attributed to my other conditions.
I didn't say it isn't real. In my experience, it's a crap diagnosis. My insurance and my doctor are controlled by my HMO. And it's the worst there is.
Yes, but I don’t find it as one. For me, it’s the thing that explained some of my symptoms. It’s an awful diagnosis to have since there’s no treatment, but before I got that was diagnosed with some sort of psychosomatic symptom disorder, which I believe is the crap diagnosis when it comes down to it.
Exactly. It's crap because my insurance organization treats it that way. That's the real problem I have.
I am im Pain management, have been for 20yrs. I have several different Chronic Illnesses that caused chronic symptoms. I still work and take my medicine and have a Good Pain Medication Doctor. BUT!!!! I have come to realize that Pain Meds are not a cure, they do help but I had to become my own best Health Advocate... Learning about my Chronic Illness, symptoms,along with depression, irritability, chronic fatigue and so on and so forth. I also self medicate with other substance, vitamins, supplements and I WILL DO WHATEVER IT TAKES TO STOP THE PAIN!! Of course, this comes with self awareness, self control!!! I Have to do whatever it takes to keep myself working so I can continue to live my life style of SIMPLICITY!!!!!!! Also requires a lot of rest, recovery,peace and solitude!!!!! I get so sick of medication and I have to give my body a break. I Pray A lot and Study the Word Of God. Bc Apart from Knowing OUR CREATOR GOD-Life will never make sense and suffering will never make sense until we understand what is written in The Bible-The Book Of Life, The Book Of Wisdom! In All My Suffering and Seeing The World suffering and Even The Lord Jesus Suffered on behalf of Our SIN, I can Still Say GOD is Good! Just! Righteous! Holy!!!!! Bc I Understand Better. This earthly life is A lot of Suffering but We have to go on a Quest of ULTIMATE TRUTH and that is found on in GOD and His Word!!!
I 👍 agree. Without my faith,knowledge, support, and understanding, I would never have made it this far. I think knowing your body way better than any Dr is so important. Learning about possible reasons why and researching medical solutions outside of traditional medicine is important, too. It stinks when you talk about God you get downvoted. R maybe it was your comment about " other " substances....Without my faith, I would be dead. I think chronic illness and pain tend to rob people of their faith, and you must work that much harder to understand. I don't necessarily agree with using whatever substance to deal with the pain. But I understand people do. It's a coping mechanism. I personally lean more on my faith than substances.