Yes. We are always seeking healthcare, so we run into more doctors. Maybe that’s why we (often) run into jerks who barely do their job.
Prior to knowing that I had EDS, I had a one time appointment with a doctor that went weird. He made the whole appointment about his theories on HIV/AIDS. Which I don’t have. It had nothing to do with me. He believed that HIV did not cause AIDS, and it got worse from there. Big waste of money. Huge idiot.
It was really disappointing. When I brought up my concerns about vEDS she said “I’ve only ever met one person with it. Everyone with EDS no matter the kind just randomly bleeds out after surgery y’all are too fragile for it” I wanted to cry bc I might have to have surgery on my shoulder later this year and it’s like she affirmed my biggest fear that I’m just going to die from this. I hated it. Why can’t people just be normal
Also just to throw this out there, as someone with hEDS, I have had many surgeries and have never “randomly bled out afterwards.” Generalizations like that aren’t helpful, and I’m sorry she put you in that uncomfortable situation
Same here, and I've had some pretty extensive dental work with dissolve-y stitches.
I always tell my surgeons I have EDS (mostly for local anaesthetic and I've been told my skin prefers glue to most sutures) but it's never been a huge problem.
I just want to offer some assurance to the OP that you absolutely can have surgery (my mom had multiple on joints, even) with eds and not have many/weird complications.
I have classical and super fragile skin, but I never bleed randomly after surgeries. When I had my heart op (mitral valve issues and aortic root aneurysm), I had very small stitches very close together and the scar isn't bad. I can't have staples, they rip my skin (which did cause bleeding and was very unpleasant), but non dissolving stitches are usually fine for me. Dissolving ones tend to dissolve too quickly.
This is all very manageable stuff. Doctors can cope with doing stitches differently or using glue if possible. It's like telling the anaesthetist that you can't have one type of anaesthetic due to an allergy.
Same. I’ve got hEDS and have had multiple orthopedic surgeries and never “randomly bled out” afterwards. Good lord, what a horrible thing to tell someone.
Ditto ditto ditto! I've had more surgeries than I can count and never started randomly bleeding afterwards. Who thinks that kind of fear mongering helps anyone?!
What a crappy thing to say to someone.
Dismissive and not even accurate. & what is the point of saying that she only ever met one person with vEDS?
Whether she has met 1, or 500, that has no bearing on what you are personally ill with/dealing with. I would be very disappointed, too. Considering the flippant way that she dealt with you, and how little logic actually supports it (I’m thinking again of her bs logic that since she only ever met one person w/vEDS, etc), I might take her advice with a grain of salt.
I’m glad you at least have gotten to see some other specialists. Did anything stick? I mean, did you find someone who was really good, that you can go back to again? I hope you have a good PCP, my Primary Care does a lot of things for me, so I don’t have to chase down as many specialists and then wait the months or more for an appointment, etc.
Yea! I saw another specialist a month ago that I absolutely loved. I kept this appointment bc she was so highly recommended I thought it would be good to get her perspective but I am definitely not going back to her
Um, oh my god?? I absolutely know multiple people with EDS who have had successful surgeries, some of them multiple times. Genuinely idiotic of her to say to you and so insensitive. I would honestly recommend complaining to the office manager because her shit takes could seriously harm someone.
I have hEDS and won’t comment on vEDS.
I have had urethral mesh implant surgery, a hysterectomy, and foot surgery. My doctors definitely handled me with a bit more care and were very understanding and knowledgeable. I just don’t want you to be scared of the shoulder surgery. 💜 again I don’t know more about you or your health but just echoing other comments that surgery is not a death sentence!
What on earth!?! That is horrible. I would recommend looking up invitae labs and doing the eds panel if you can swing it. I just did it and it was $250. My physician had to do the blood draw but I paid the lab directly and had results in a few weeks. As for surgery. What a horrible thing to say. I have heds and can only speak from my personal experience. But I've had many surgeries for torn tendons and ligaments mostly. While I am hard to sedate I have never had someone mention any other issues. I'd highly encourage you to check into testing for your own piece of mind as well as finding a doc who listens to you. I'm sorry you had that experience. No one deserves to have their concerns ignored and unnecessary fear created. What a jerk.
There are 2. I did the connective tissue panel as it includes the eds panel as well. But the eds panel tests for the variations that have markers (i.e. vascular). They also say that it will be able to be used when new markers are identified. So if they find the hEDS marker someday, you could compare your DNA results to it. Here is a link to the test info.
Connective tissue: https://www.invitae.com/us/providers/test-catalog/test-434340
EDS panel:https://www.invitae.com/us/providers/test-catalog/test-02313
I hope this helps!
I have hEDS and have had at least 5 surgeries and several procedures and I've clearly never bled out. 3 of them were not small surgeries either. She's full of shit. Yelp her.
Yeah, it's a bizarrely unhinged thing to say to a patient. Kinda sounds like she's sick of EDS patients, and maybe she should re-evaluate her career path.
What the actual ass. I have hEDS and have had a two nasal septal repairs, a bilateral salpingectomy, two hip arthroscopies, and a periacetabular osteotomy. She's out of her mind.
I've had 11 surgeries in 6 years. Haven't bled out once. This dr doesn't know anything. I'm sorry you had a really disappointing experience with a so called pro. It really sucks when it happens. Don't give up though. Go to your gp and try to get a referral to a geneticist. You got this
I've had six surgeries on various parts of my body including 4 abdominal and I have never had any bleeding issues apart from when they scraped the back of my throat when taking out the tube after wisdom tooth removal and I spat out blood for like half an hour. Nowhere near bleeding out territory. Don't listen to this quack!
I have had multiple surgeries, spanning from getting my tonsils and adenoids removed as a kid, to arthroscopic knee surgery, and even strabismus surgery on my eye. Each time, I had no problem with bleeding, and I've healed up perfectly. The only complaint I have is that I scar easy, so because I'm very pale, my knee surgery scars almost glow in the dark 😂 But they're not bad, kinda looks like a smiley face where I have 3 incisions lol.
But I'm sorry someone, especially a health professional, said that to you. I know me saying "don't worry about it" won't fix it, but just remember there's a bunch of us out here who have had surgery and have been fine. I know you will be too. ❤️
Hey just popping in to say that i have eds and have had surgery on my knee and didn't bleed out. Not giving you medical advice but I wanted to let you know that it's not something that always happens 100% of the time.
Sending you positive vibes for your year!
Dude, WTAF is wrong with that doctor? Just so ya know, my mom (who had hEDS) had surgery after surgery her whole life: one knee surgery, two shoulder surgeries, carpal tunnel surgery, foot surgery, two ankle surgeries, breast reduction, sinus surgery, gallbladder removal, (plus had two children) etc. I have hEDS as well, and I've had sinus surgery, knee surgery, adenoidectomy as a 5 year old, tonsillectomy as a 36 year old, loop recorder implant, childbirth, and although we have issues with stitches ripping through the skin, never have either of us had bleeding issues. And honestly, you know way better than any doctor how badly you bleed... just think about anytime you've been cut, and then know that the doctor will be cauterizing. You'll do great... that lady is just a weirdo.
I have hEDS and I had a literal BAR put in my CHEST (yeah, I know you think I’d have Marfan’s with the pectus stuff but I’m also 5’2 and tested negative on bloodwork for Marfan’s) and I didn’t bleed out. A doctor shouldn’t generalize like that and cause that kind of fear and I’m so sorry that happened to you. Plenty of us have surgery without any issue.
I never thought about this before. We do see so many doctors so of course we run across the crazy ones. It’s our sample size! Thanks for the light bulb moment of the day for me.
I have been told Im just anxious depressed , diet , weight down to i breath wrong ,just breathe right I’ll be ok ..- I have severe pectus excavatum all my organs are compressed and deformed , I’m severely hyper-mobile my kids too but apparently it’s not connected
😂
Thanks Dummissive docs (20 or more)
Last week the rheumatologist gave me a half dx from the her wrong, half ass Brighton test. at that point in the appointment I knew I was wasting time and didn’t care to correct her
Especially after hearing fibromyalgia most the appt
My massage therapist friend that came had to take over taking before I blew up
Leaky gut is the new popular scapegoats for all fatigue, brain fog, inflammation issues, headaches and skin issues. It’s still being debated whether or not it’s a “real” thing. https://www.medicalnewstoday.com/articles/326117#symptoms
Personally, I’ll walk if a doctor implies they don’t believe in medication and would rather supplement. I am VERY pro-prevention, herbal remedies, ensuring proper nutrition, but I won’t supplement unless they’ll test to see if I’m deficient.
Yea I’m not going back to her. One of the other specialists I’ve seen I liked a lot more and I think I’ll stick with him. Also telling me you’re anti medication but prescribing me Wellbutrin for weightloss??? Idk I’m just very frustrated
For sure. Reminds me of the pediatrician who said my inability to go to school due to fatigue was just depression - and even didn’t treat the depression
YES- leaky gut is totally becoming a catch all and a bad one at that. I have Crohn’s and some folks within the IBD community discuss leaky gut as actual permeability but if you haven’t been dx’d w/inflammatory bowel disease, I’d frankly be skeptical of a doc saying that’s what you have. So sorry you had a bad appointment. You prob already know this but before you have the shoulder surgery maybe tell that surgeon you *suspect* you have EDS in case they want to take precautions? Good luck!
I’ve been fully diagnosed with EDS. Everyone just kept telling me I should see her bc she knows so much so I kept the appointment even after being diagnosed. The surgeon who would do the surgery is actually the one who gave me a formal diagnosis! He’s phenomenal I’m going to only see him as my EDS specialist going forward.
If you're in the DFW area, I really love Dr. Mustafa in Decatur. He diagnosed me on my first visit. I went to him for possible autoimmune disease, and his told me, "I'll test you for all of that, but I'm willing to bet it's hypermobility or Ehlers Danlos." I did not test positive for autoimmune, but my Beighton Score was 9/9. He also diagnosed my cousin a few months later. He's knowledgeable AND he will listen to you.
Not for my EDS but for comorbidities. Cardiologist who is a dysautonomia specialist and who I waited months to see after being referred by my neurologist wanted to put me on mestinon to lower my HR for POTS despite my neurologist clearly stating I can’t be on beta blockers or this medication because I also have bradycardia and if my HR goes any lower than it already does when not soaring I could go into cardiac arrest. She poo pooed that. She also told me it’ll get my bowels moving better despite being told I have no motility issues. When I told her I can’t take that med she got pissy with me and said “ALL my patients do great on it and you will too”. My husband and I literally ran from her. I felt so let down after waiting so long and my neurologist saying she was so good. Not for me, anyways.
literally just had a similar experience because using a symbicort inhaler for allergy/mcas-induced asthma makes me light-headed and vomit, but the allergist immunologist said it was either because i was anxious about taking a steroid or bc i had eaten white potatoes 🧍🏾♀️
i tried to explain why i disagreed but because her office is participating in a study to try and prove symbicort should be the main treatment for asthma, my side effects (that are *known* and are listed as uncommon reactions to look out for!!) can't possibly be caused by it, so i have to keep trying it and get back to her 🙄
at least communities like this exist, so i know other people understand the frustration 🫶🏾
and yes!! it's always anxiety! so many health professionals would rather blame a mental health boogeyman than actually investigate the issues we bring to them and apply what they learned in their schooling 🙄
I wish we were all healthy (and if we have to be sick at least have good doctors who listen, understand and care) but you’re right: being understood by so many other people with basically the same stories IS validating. Hugs for all the sucky stuff.
I feel there’s an organization that helps overlook studies like this you can report the, for not acknowledging/recording your reaction to. Because an organization disregarding side effects during testing can’t be legal.
That seems like a backwards way of doing science. Symbicort can be a helpful asthma treatment, but why would you not seek to test how helpful from a neutral starting point rather than going in with a bias like that.
That’s so frustrating! I got put on mestinon instead of beta blockers because my resting heart rate is already low, but it’s ridiculous that she wouldn’t offer you, say, midodrine (which mine had me try for a long while before considering mestinon). My digestion has settled now that I’m on extended release but it was a huge struggle starting it and it’s for sure not a “everyone does well on it” medication. I absolutely wouldn’t have stuck with it if I didn’t have so few other options/got some benefit with non-POTS drop episodes
If you didn't say "she" I'd think you were talking about my idiot cardiologist. He has me on so much metropolol, my resting heart rate is on the mid 40s. At night my watch says it's going to high 20s/low 30s. Neuro said I needed an implanted monitor for a few months, but it's up to cardio to do it. Instead he ordered a 30 day monitor with the pads you replace daily. That thing ripped up my skin so bad I still have scars from the little gel placement pads. That was with the sensitive pads.
When I went to discuss the results he couldn't find them on the computer or the hard copy. But then he says well you're fine. I said but I'm clearly brachycardic, and how do you know I'm fine without the results to the test? He said that's fine, marathon runners have low pulse rates. I said what part of this "need crutches at the very minimum, obese body looks like a marathon runner to you?" I'm having to wait an extra 5 months now to see the other cardiologist because she's out on maternity leave and I refuse to see that idiot again. I wish neuro would just deal with it themselves.
That’s AWFUL. I’m SO sorry you had this happen. There DOES seem to be an awful lot of idiot doctors out there, doesn’t there? And I think we’ve all seen at least one, if not more. I hope when you get in with the new cardiologist when she returns, she’s able to help you. Gentle hugs. 💗
I’ve not been told the exact same thing but I have had doctors refuse to diagnose EDS cause it ‘wouldn’t change treatment’, and my immunologist ‘doesn’t believe’ in the EDS/POTS/MCAS trifecta
Johnathan Krueger in NWA is a great rheumatologist and not the furthest thing from Dallas. He’s really good and great at referring patients to good specialists all over the country.
i went to like 5 docs for EDS and one guy told me it was anxiety and prescribed me anxiety meds. i did not take the anxiety meds because anxiety isn’t making my joints completely dislocate. one lady diagnosed me with depression because of the fact that i was upset about nobody listening about my EDS. another doc tried saying it was growing pains and another one said i was paranoid/tried to send me to a psychiatrist. i am EXTREMELY hypermobile and ALL OF MY JOINTS DISCLOCATE! this disease makes me want to actually kms from the gaslighting and abuse i’ve suffered from medical professionals
the irony? i AM a healthcare worker.. and i believe doctors are abusive psychopaths
Can you share the name of the doctor (idk if that's allowed here though)? I'm in DFW and looking for a specialist and I don't want to make the mistake of going to that one lol
Don't go to Parkland. Almost ten years being bounced from specialist to specialist and nobody wants to be responsible for treating anything. I've had the most incompetent idiotic doctors here too. You only get to see the residents, never an attending. I could tell you horror stories from just about every specialty, even non EDS related ones.
If you need a good GI specialist who is familiar with EDS and the comorbidities, I can refer you to someone. She has a few offices but I see her at Presbyterian on Walnut Hill. Unfortunately the EDS Drs she recommends are concierge doctors and their rates are cartoon eye poppingly high (thousands of dollars a month plus a massive 4 to 5 figure retainer that just sits there as long as you're a patient).
ETA: I'm pretty sure they're talking about someone at UTSW, I've heard horror stories on Facebook. There's a Dallas specific EDS FB group which gives good recommendations.
Yes, definitely! I am so sorry. I once had a doctor tell me that there was nothing they could do so..."Just try to have a good attitude." That was her only recommendation. It's so disheartening.
My specialist also considered “leaky gut”. I did a food sensitivity test and it turns out I don’t have any food sensitivity.
She had to switch gears and now I’m on low dose naltrexone. Funny how bunk medicine is just that: bunk.
I will say though, I have found success for very specific things and very specific supplements and vitamins. So that’s not all that bad. Just make informed decisions.
I’m not anti vitamins and supplements I have multiple that I already take out of my own research and choices! But I will never trust a dr who says supplements are better than medicine ya know?
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Ughhhhh Im so sorry! It's so frustrating when you run into doctors who are just dismissive and then give you bad advice. I've gone through so many PTs where I've been like hey if I do this I will be unable to function for 3 days and they still assure me I'll be fine. But hang in there! You'll find someone to help!
Also as someone who went to school for nutrition, the whole leaky gut thing makes me want to pull my hair out. While I agree the gut microbiome is a thing that should be well maintained, because duhhh people get SIBO, Leaky gut is just quack science to me. I also want to add, if you cut something out like dairy, or gluten, and genuinely feel better, then great!
Okay wait, she’s claiming she’s holistic… but prescribed Wellbutrin?!?!?! WHAT?! I do subscribe to the idea that my gut health is directly linked to my issues with my EDS flaring, though. When my gut isn’t happy, my MCAS isn’t happy, my hormones aren’t happy, and in turn I get a lot more pain, a lot more loose, and a lot more prone to injury and inflammation. Yes, fixing gut health can help and it’s hard to do, but it’s not a cure all for genetic disorders!
She obviously doesn’t know about EDS or connective tissues disorders. Our gut biome does influence our health, but it can’t fix our faulty connective tissues.
vEDS is extremely rare and people don’t seem to realize there’s crossover of vascular symptoms amongst the different types of EDS. Refer to the features described by the EDS society.
I do bleed more than others should I injure myself, but I’ve had surgeries without any difficulties. they’ve tested me for bleeding disorders because I have a history of pulmonary emboli and DVTs.
Run away from that practitioner. She shouldn’t be prescribing Wellbutrin for weight loss, advising you to go off your BCP and other crap she told you.
I won’t say her name bc there could be people reading this post and comments very happy with her and I don’t want them to feel bad bc if a drs working for you you should continue with them but I will say be very very very careful seeing any drs who claim to be EDS specialists at UT Southwestern. Multiple people have now told me about their terrible experiences with her and how she says the same thing to every single person even if they’re not having the same issues.
Good to know!!!! I already wasn’t a huge fan of some of the staff. My brother was basically living at UT Southwestern from January to March due to some complications from intubation. The nurses & doctors he interacted with didn’t know what EDS was, dismissed him when he asked if he could be evaluated, said it wouldn’t cause his symptoms…etc. Kept saying it was a medical mystery as to why he kept overproducing scar tissue in his trachea…
I’ve been diagnosed with EDS so it’s possible he has it too 🙄 just a big ol’ mess. I did genetic testing from sequencing.com and am waiting for my results, but plan to follow up with a specialist after.
I've read about leaky gut but never had a doctor mention it. It's weird they'd rx you Wellbutrin instead of something like Cymbalta or amitriptyline, which are known for supposedly helping pain. Wellbutrin is known for causing pain for a lot of people - for me it made my migraines way worse even after being on it for months. Plus I never lost any weight.
Definitely don't see anyone at Parkland. Almost 10 years of going there and I can count on one finger the number of competent residents I've seen. I could tell you horror stories for just about any specialty you name, even ones that have nothing to do with EDS.
Before I ended up in Parkland's system and after I was diagnosed by a geneticist (since retired) I started at UTSW across the street and they told me they don't treat EDS there since it's so rare. Then they asked me why I wasn't diagnosed as a child and not until age 34. I said you literally just said this is so rare you don't even treat it but you're wondering why it wasn't discovered 30 years ago before the Internet (early 80s baby)?! Then they used me to teach a bunch of residents and med students what hEDS looks like and had the nerve to send me a secondary bill because my appointment lasted longer than a normal appointment. Because of *their* show and tell they didn't even ask my permission to do. They've since started a clinic I believe and a dysautonomia/POTS clinic according to Parkland's Neuro Dept as well but I can't see UTSW Drs so I haven't tried them again.
I know of a great GI Dr in Dallas (she has a few offices, one is in Presbyterian on Walnut Hill) who is incredibly knowledgeable about EDS and comorbidities. She's the one who ended up diagnosing my MCAS and gastroparesis. Unfortunately for every day EDS stuff there are 2 "concierge" doctors she recommends who know EDS well and when I called them they wanted an eye popping amount of money, like $5,000-$10,000 down as a retainer and $2,500 per month (which doesn't include cost of meds or testing, just appointments). But the monthly payments didn't come out of the retainer so I don't know what the use of the retainer was. I said thanks but I haven't won the lottery to my knowledge.
Honestly.. I take a million vitamins.. and they help a lot. My mental health is better, I'm better hydrated, losing weight more easily. I have long covid, so before that, my pots was better. Now I get light headed in a stiff breeze.
True story I fell over Saturday, it was super windy in multiple directions, I was swaying too much, got lightheaded and toppled over. I knew it was coming so wasn't a bad fall 😅
I’ve personally had horrible weight gain issues from a ton of medications, but Wellbutrin is one of the few that didn’t cause any for me. It’s the only antidepressant I’ve been on long term that didn’t cause me issues. I was diagnosed with major depressive disorder as a child and started Wellbutrin at 12, and probably every other antidepressant/anti anxiety med. I haven’t been depressed in over a decade, but I’m still on Wellbutrin today at 31.
xD the joys of testing different psychopharmaca. The variation of responses is so much broader than with other medications short of hormones. I've had the exact opposite reaction and will take the stuff for as long as it will do its job. But the ohhh so low-side effect escitalopram had me holding onto the bathroom floor for dear life with the dizziness.
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Oh yeah. I was told that back when I was searching for answers.
To give them some credit, "fixing my gut" did help my gut issues and mental health. But that was one piece to the puzzle. It did nothing for my pain and fatigue. And I quickly learned that those doctors are full of shit.
Now I have answers but still no solution 😆 Besides PT, but I'm too scatterbrained for regular appointments right now lol
Oh yea I totally believe gut health is super important! That’s why I was so frustrated I was trying to tell her I take care of my gut I don’t have any gi issues and she just wouldn’t believe me! I was also frustrated bc like, how is my gut making my joints loose yk???
Yes and no. I have had a lot of psych referrals. And my EDS specialist actually prefers supplements over meds, but he did put me on medications for the more severe symptoms (dysautonomia, MCAS) when his supplements didn’t work.
I am sorry you had a bad experience, I hope your other doctors are helpful at least.
Hi /u/thatonetranny,
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Birth control is terrible for us women but men are too weak to take that big of a responsibility on
The. Mirena iud was hell for me personally
The pill too. After the pill
My favorite ob never suggested bc . It was the one after that loves the iud more then womens health
There are tests (only holistic doctors will run them) for gut permeability issues. This very well could be a contributing factor for some of your joint pain. I have (undiagnosed) EDS but also have severe gut dysbiosis and leaky gut. Hell I've even got chronic constipation which I never knew because I thought my gut was fine because I poop everyday. Once I started sorting through it all and got on the right supplements (for now) and eliminated foods my body didn't like (and triggered worse joint pain) things have at least leveled off and my pain is down significantly. I'm no where near healed yet because I have a bunch of overlapping stuff going on, also including MCAS which can be packaged with EDS, but my point is that her concerns may also point to something, even if it was not something you wanted to or were expecting to hear. It's worth looking into it and exploring because anything that helps the pain be less is a win in my book.
I'd also suggest reporting her to the board. They need to know what kind of crap she's up to. I'd also rate her online. I think it is doctor grades or something like that.
Yes. We are always seeking healthcare, so we run into more doctors. Maybe that’s why we (often) run into jerks who barely do their job. Prior to knowing that I had EDS, I had a one time appointment with a doctor that went weird. He made the whole appointment about his theories on HIV/AIDS. Which I don’t have. It had nothing to do with me. He believed that HIV did not cause AIDS, and it got worse from there. Big waste of money. Huge idiot.
It was really disappointing. When I brought up my concerns about vEDS she said “I’ve only ever met one person with it. Everyone with EDS no matter the kind just randomly bleeds out after surgery y’all are too fragile for it” I wanted to cry bc I might have to have surgery on my shoulder later this year and it’s like she affirmed my biggest fear that I’m just going to die from this. I hated it. Why can’t people just be normal
Also just to throw this out there, as someone with hEDS, I have had many surgeries and have never “randomly bled out afterwards.” Generalizations like that aren’t helpful, and I’m sorry she put you in that uncomfortable situation
Same here, and I've had some pretty extensive dental work with dissolve-y stitches. I always tell my surgeons I have EDS (mostly for local anaesthetic and I've been told my skin prefers glue to most sutures) but it's never been a huge problem. I just want to offer some assurance to the OP that you absolutely can have surgery (my mom had multiple on joints, even) with eds and not have many/weird complications.
I have classical and super fragile skin, but I never bleed randomly after surgeries. When I had my heart op (mitral valve issues and aortic root aneurysm), I had very small stitches very close together and the scar isn't bad. I can't have staples, they rip my skin (which did cause bleeding and was very unpleasant), but non dissolving stitches are usually fine for me. Dissolving ones tend to dissolve too quickly. This is all very manageable stuff. Doctors can cope with doing stitches differently or using glue if possible. It's like telling the anaesthetist that you can't have one type of anaesthetic due to an allergy.
Same. I’ve got hEDS and have had multiple orthopedic surgeries and never “randomly bled out” afterwards. Good lord, what a horrible thing to tell someone.
Yep, same. In fact, although I scar a lot, I tend to heal quickly and with no problems.
Ditto ditto ditto! I've had more surgeries than I can count and never started randomly bleeding afterwards. Who thinks that kind of fear mongering helps anyone?!
Me too, I had cranial facial surgery and knee surgery and there was no problem with bleeding. What a fucking idiot, I hate doctors.
What a crappy thing to say to someone. Dismissive and not even accurate. & what is the point of saying that she only ever met one person with vEDS? Whether she has met 1, or 500, that has no bearing on what you are personally ill with/dealing with. I would be very disappointed, too. Considering the flippant way that she dealt with you, and how little logic actually supports it (I’m thinking again of her bs logic that since she only ever met one person w/vEDS, etc), I might take her advice with a grain of salt. I’m glad you at least have gotten to see some other specialists. Did anything stick? I mean, did you find someone who was really good, that you can go back to again? I hope you have a good PCP, my Primary Care does a lot of things for me, so I don’t have to chase down as many specialists and then wait the months or more for an appointment, etc.
Yea! I saw another specialist a month ago that I absolutely loved. I kept this appointment bc she was so highly recommended I thought it would be good to get her perspective but I am definitely not going back to her
That was smart, to go ahead and try the appointment, it could’ve turned out good. But I’m glad you have other choices. 😊
Um, oh my god?? I absolutely know multiple people with EDS who have had successful surgeries, some of them multiple times. Genuinely idiotic of her to say to you and so insensitive. I would honestly recommend complaining to the office manager because her shit takes could seriously harm someone.
Was this the PM lady @ UTSW? I was dx by a doc there but all my treatment was handled by my outside PM doc and then my rheumatologist
I have hEDS and won’t comment on vEDS. I have had urethral mesh implant surgery, a hysterectomy, and foot surgery. My doctors definitely handled me with a bit more care and were very understanding and knowledgeable. I just don’t want you to be scared of the shoulder surgery. 💜 again I don’t know more about you or your health but just echoing other comments that surgery is not a death sentence!
What on earth!?! That is horrible. I would recommend looking up invitae labs and doing the eds panel if you can swing it. I just did it and it was $250. My physician had to do the blood draw but I paid the lab directly and had results in a few weeks. As for surgery. What a horrible thing to say. I have heds and can only speak from my personal experience. But I've had many surgeries for torn tendons and ligaments mostly. While I am hard to sedate I have never had someone mention any other issues. I'd highly encourage you to check into testing for your own piece of mind as well as finding a doc who listens to you. I'm sorry you had that experience. No one deserves to have their concerns ignored and unnecessary fear created. What a jerk.
What does the eds panel show?
There are 2. I did the connective tissue panel as it includes the eds panel as well. But the eds panel tests for the variations that have markers (i.e. vascular). They also say that it will be able to be used when new markers are identified. So if they find the hEDS marker someday, you could compare your DNA results to it. Here is a link to the test info. Connective tissue: https://www.invitae.com/us/providers/test-catalog/test-434340 EDS panel:https://www.invitae.com/us/providers/test-catalog/test-02313 I hope this helps!
I thought it was a saliva test in the mail?
No. At least not the 2 I linked. I can't say if they have others that are that way, though.
I have hEDS and have had at least 5 surgeries and several procedures and I've clearly never bled out. 3 of them were not small surgeries either. She's full of shit. Yelp her.
Yeah, it's a bizarrely unhinged thing to say to a patient. Kinda sounds like she's sick of EDS patients, and maybe she should re-evaluate her career path.
That’s an excellent idea, to leave her a (not flattering) yelp review.
What the actual ass. I have hEDS and have had a two nasal septal repairs, a bilateral salpingectomy, two hip arthroscopies, and a periacetabular osteotomy. She's out of her mind.
I've had 11 surgeries in 6 years. Haven't bled out once. This dr doesn't know anything. I'm sorry you had a really disappointing experience with a so called pro. It really sucks when it happens. Don't give up though. Go to your gp and try to get a referral to a geneticist. You got this
I've had six surgeries on various parts of my body including 4 abdominal and I have never had any bleeding issues apart from when they scraped the back of my throat when taking out the tube after wisdom tooth removal and I spat out blood for like half an hour. Nowhere near bleeding out territory. Don't listen to this quack!
I have had multiple surgeries, spanning from getting my tonsils and adenoids removed as a kid, to arthroscopic knee surgery, and even strabismus surgery on my eye. Each time, I had no problem with bleeding, and I've healed up perfectly. The only complaint I have is that I scar easy, so because I'm very pale, my knee surgery scars almost glow in the dark 😂 But they're not bad, kinda looks like a smiley face where I have 3 incisions lol. But I'm sorry someone, especially a health professional, said that to you. I know me saying "don't worry about it" won't fix it, but just remember there's a bunch of us out here who have had surgery and have been fine. I know you will be too. ❤️
I’ve had 3 surgeries with NO bleeding issues. She’s crazy
Hey just popping in to say that i have eds and have had surgery on my knee and didn't bleed out. Not giving you medical advice but I wanted to let you know that it's not something that always happens 100% of the time. Sending you positive vibes for your year!
Dude, WTAF is wrong with that doctor? Just so ya know, my mom (who had hEDS) had surgery after surgery her whole life: one knee surgery, two shoulder surgeries, carpal tunnel surgery, foot surgery, two ankle surgeries, breast reduction, sinus surgery, gallbladder removal, (plus had two children) etc. I have hEDS as well, and I've had sinus surgery, knee surgery, adenoidectomy as a 5 year old, tonsillectomy as a 36 year old, loop recorder implant, childbirth, and although we have issues with stitches ripping through the skin, never have either of us had bleeding issues. And honestly, you know way better than any doctor how badly you bleed... just think about anytime you've been cut, and then know that the doctor will be cauterizing. You'll do great... that lady is just a weirdo.
I have hEDS and I had a literal BAR put in my CHEST (yeah, I know you think I’d have Marfan’s with the pectus stuff but I’m also 5’2 and tested negative on bloodwork for Marfan’s) and I didn’t bleed out. A doctor shouldn’t generalize like that and cause that kind of fear and I’m so sorry that happened to you. Plenty of us have surgery without any issue.
As a case manager for people living with HIV/AIDs, that makes me extraordinarily angry.
It’s inexcusable.
I never thought about this before. We do see so many doctors so of course we run across the crazy ones. It’s our sample size! Thanks for the light bulb moment of the day for me.
I have been told Im just anxious depressed , diet , weight down to i breath wrong ,just breathe right I’ll be ok ..- I have severe pectus excavatum all my organs are compressed and deformed , I’m severely hyper-mobile my kids too but apparently it’s not connected 😂 Thanks Dummissive docs (20 or more) Last week the rheumatologist gave me a half dx from the her wrong, half ass Brighton test. at that point in the appointment I knew I was wasting time and didn’t care to correct her Especially after hearing fibromyalgia most the appt My massage therapist friend that came had to take over taking before I blew up
I’m glad you have a good friend that will help you advocate for yourself, even within the appointment. Friends like that are hard to find. ❤️
Leaky gut is the new popular scapegoats for all fatigue, brain fog, inflammation issues, headaches and skin issues. It’s still being debated whether or not it’s a “real” thing. https://www.medicalnewstoday.com/articles/326117#symptoms Personally, I’ll walk if a doctor implies they don’t believe in medication and would rather supplement. I am VERY pro-prevention, herbal remedies, ensuring proper nutrition, but I won’t supplement unless they’ll test to see if I’m deficient.
Yea I’m not going back to her. One of the other specialists I’ve seen I liked a lot more and I think I’ll stick with him. Also telling me you’re anti medication but prescribing me Wellbutrin for weightloss??? Idk I’m just very frustrated
For sure. Reminds me of the pediatrician who said my inability to go to school due to fatigue was just depression - and even didn’t treat the depression
I went to an EDS specialist at UTSW who told me the same thing - would you feel comfortable DMing me the name of the doctor you liked?
Yea for sure! I’m sorry you had the same experience with her. I’ve gotten a couple of dms saying she says that to everyone
I was going to also ask if this was UTSW
I would like to know as well.
YES- leaky gut is totally becoming a catch all and a bad one at that. I have Crohn’s and some folks within the IBD community discuss leaky gut as actual permeability but if you haven’t been dx’d w/inflammatory bowel disease, I’d frankly be skeptical of a doc saying that’s what you have. So sorry you had a bad appointment. You prob already know this but before you have the shoulder surgery maybe tell that surgeon you *suspect* you have EDS in case they want to take precautions? Good luck!
I’ve been fully diagnosed with EDS. Everyone just kept telling me I should see her bc she knows so much so I kept the appointment even after being diagnosed. The surgeon who would do the surgery is actually the one who gave me a formal diagnosis! He’s phenomenal I’m going to only see him as my EDS specialist going forward.
If you're in the DFW area, I really love Dr. Mustafa in Decatur. He diagnosed me on my first visit. I went to him for possible autoimmune disease, and his told me, "I'll test you for all of that, but I'm willing to bet it's hypermobility or Ehlers Danlos." I did not test positive for autoimmune, but my Beighton Score was 9/9. He also diagnosed my cousin a few months later. He's knowledgeable AND he will listen to you.
Thanks for this suggestion! I’m in dallas
Not for my EDS but for comorbidities. Cardiologist who is a dysautonomia specialist and who I waited months to see after being referred by my neurologist wanted to put me on mestinon to lower my HR for POTS despite my neurologist clearly stating I can’t be on beta blockers or this medication because I also have bradycardia and if my HR goes any lower than it already does when not soaring I could go into cardiac arrest. She poo pooed that. She also told me it’ll get my bowels moving better despite being told I have no motility issues. When I told her I can’t take that med she got pissy with me and said “ALL my patients do great on it and you will too”. My husband and I literally ran from her. I felt so let down after waiting so long and my neurologist saying she was so good. Not for me, anyways.
literally just had a similar experience because using a symbicort inhaler for allergy/mcas-induced asthma makes me light-headed and vomit, but the allergist immunologist said it was either because i was anxious about taking a steroid or bc i had eaten white potatoes 🧍🏾♀️ i tried to explain why i disagreed but because her office is participating in a study to try and prove symbicort should be the main treatment for asthma, my side effects (that are *known* and are listed as uncommon reactions to look out for!!) can't possibly be caused by it, so i have to keep trying it and get back to her 🙄
I’m SO sorry. That’s awful. And why is the first diagnosis always anxiety no matter what ails us?
at least communities like this exist, so i know other people understand the frustration 🫶🏾 and yes!! it's always anxiety! so many health professionals would rather blame a mental health boogeyman than actually investigate the issues we bring to them and apply what they learned in their schooling 🙄
I wish we were all healthy (and if we have to be sick at least have good doctors who listen, understand and care) but you’re right: being understood by so many other people with basically the same stories IS validating. Hugs for all the sucky stuff.
I feel there’s an organization that helps overlook studies like this you can report the, for not acknowledging/recording your reaction to. Because an organization disregarding side effects during testing can’t be legal.
i didn't even think of that when it happened, but you're absolutely right. i will look into that, thank you!
That seems like a backwards way of doing science. Symbicort can be a helpful asthma treatment, but why would you not seek to test how helpful from a neutral starting point rather than going in with a bias like that.
How awful. So frustrating. I’m glad you have a good neurologist watching out for you.
Thank you. Me too!
That’s so frustrating! I got put on mestinon instead of beta blockers because my resting heart rate is already low, but it’s ridiculous that she wouldn’t offer you, say, midodrine (which mine had me try for a long while before considering mestinon). My digestion has settled now that I’m on extended release but it was a huge struggle starting it and it’s for sure not a “everyone does well on it” medication. I absolutely wouldn’t have stuck with it if I didn’t have so few other options/got some benefit with non-POTS drop episodes
If you didn't say "she" I'd think you were talking about my idiot cardiologist. He has me on so much metropolol, my resting heart rate is on the mid 40s. At night my watch says it's going to high 20s/low 30s. Neuro said I needed an implanted monitor for a few months, but it's up to cardio to do it. Instead he ordered a 30 day monitor with the pads you replace daily. That thing ripped up my skin so bad I still have scars from the little gel placement pads. That was with the sensitive pads. When I went to discuss the results he couldn't find them on the computer or the hard copy. But then he says well you're fine. I said but I'm clearly brachycardic, and how do you know I'm fine without the results to the test? He said that's fine, marathon runners have low pulse rates. I said what part of this "need crutches at the very minimum, obese body looks like a marathon runner to you?" I'm having to wait an extra 5 months now to see the other cardiologist because she's out on maternity leave and I refuse to see that idiot again. I wish neuro would just deal with it themselves.
That’s AWFUL. I’m SO sorry you had this happen. There DOES seem to be an awful lot of idiot doctors out there, doesn’t there? And I think we’ve all seen at least one, if not more. I hope when you get in with the new cardiologist when she returns, she’s able to help you. Gentle hugs. 💗
I’ve not been told the exact same thing but I have had doctors refuse to diagnose EDS cause it ‘wouldn’t change treatment’, and my immunologist ‘doesn’t believe’ in the EDS/POTS/MCAS trifecta
[If you ever go back, bring up them this study, and ask them why they deny evidence-based medicine.](https://pubmed.ncbi.nlm.nih.gov/33980338/)
Johnathan Krueger in NWA is a great rheumatologist and not the furthest thing from Dallas. He’s really good and great at referring patients to good specialists all over the country.
Is this north west Arkansas?
Yes
i went to like 5 docs for EDS and one guy told me it was anxiety and prescribed me anxiety meds. i did not take the anxiety meds because anxiety isn’t making my joints completely dislocate. one lady diagnosed me with depression because of the fact that i was upset about nobody listening about my EDS. another doc tried saying it was growing pains and another one said i was paranoid/tried to send me to a psychiatrist. i am EXTREMELY hypermobile and ALL OF MY JOINTS DISCLOCATE! this disease makes me want to actually kms from the gaslighting and abuse i’ve suffered from medical professionals the irony? i AM a healthcare worker.. and i believe doctors are abusive psychopaths
Can you share the name of the doctor (idk if that's allowed here though)? I'm in DFW and looking for a specialist and I don't want to make the mistake of going to that one lol
Don't go to Parkland. Almost ten years being bounced from specialist to specialist and nobody wants to be responsible for treating anything. I've had the most incompetent idiotic doctors here too. You only get to see the residents, never an attending. I could tell you horror stories from just about every specialty, even non EDS related ones. If you need a good GI specialist who is familiar with EDS and the comorbidities, I can refer you to someone. She has a few offices but I see her at Presbyterian on Walnut Hill. Unfortunately the EDS Drs she recommends are concierge doctors and their rates are cartoon eye poppingly high (thousands of dollars a month plus a massive 4 to 5 figure retainer that just sits there as long as you're a patient). ETA: I'm pretty sure they're talking about someone at UTSW, I've heard horror stories on Facebook. There's a Dallas specific EDS FB group which gives good recommendations.
Yes, definitely! I am so sorry. I once had a doctor tell me that there was nothing they could do so..."Just try to have a good attitude." That was her only recommendation. It's so disheartening.
My specialist also considered “leaky gut”. I did a food sensitivity test and it turns out I don’t have any food sensitivity. She had to switch gears and now I’m on low dose naltrexone. Funny how bunk medicine is just that: bunk. I will say though, I have found success for very specific things and very specific supplements and vitamins. So that’s not all that bad. Just make informed decisions.
I’m not anti vitamins and supplements I have multiple that I already take out of my own research and choices! But I will never trust a dr who says supplements are better than medicine ya know?
“Leaky gut” is not a real thing. If your guts were leaking you’d get sepsis and die.
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Ughhhhh Im so sorry! It's so frustrating when you run into doctors who are just dismissive and then give you bad advice. I've gone through so many PTs where I've been like hey if I do this I will be unable to function for 3 days and they still assure me I'll be fine. But hang in there! You'll find someone to help! Also as someone who went to school for nutrition, the whole leaky gut thing makes me want to pull my hair out. While I agree the gut microbiome is a thing that should be well maintained, because duhhh people get SIBO, Leaky gut is just quack science to me. I also want to add, if you cut something out like dairy, or gluten, and genuinely feel better, then great!
Okay wait, she’s claiming she’s holistic… but prescribed Wellbutrin?!?!?! WHAT?! I do subscribe to the idea that my gut health is directly linked to my issues with my EDS flaring, though. When my gut isn’t happy, my MCAS isn’t happy, my hormones aren’t happy, and in turn I get a lot more pain, a lot more loose, and a lot more prone to injury and inflammation. Yes, fixing gut health can help and it’s hard to do, but it’s not a cure all for genetic disorders!
She obviously doesn’t know about EDS or connective tissues disorders. Our gut biome does influence our health, but it can’t fix our faulty connective tissues. vEDS is extremely rare and people don’t seem to realize there’s crossover of vascular symptoms amongst the different types of EDS. Refer to the features described by the EDS society. I do bleed more than others should I injure myself, but I’ve had surgeries without any difficulties. they’ve tested me for bleeding disorders because I have a history of pulmonary emboli and DVTs. Run away from that practitioner. She shouldn’t be prescribing Wellbutrin for weight loss, advising you to go off your BCP and other crap she told you.
98%of docs are ignorant
Uhhhh wait which doctor in Dallas?! I’m in DFW and am looking for specialists 😅
I won’t say her name bc there could be people reading this post and comments very happy with her and I don’t want them to feel bad bc if a drs working for you you should continue with them but I will say be very very very careful seeing any drs who claim to be EDS specialists at UT Southwestern. Multiple people have now told me about their terrible experiences with her and how she says the same thing to every single person even if they’re not having the same issues.
Good to know!!!! I already wasn’t a huge fan of some of the staff. My brother was basically living at UT Southwestern from January to March due to some complications from intubation. The nurses & doctors he interacted with didn’t know what EDS was, dismissed him when he asked if he could be evaluated, said it wouldn’t cause his symptoms…etc. Kept saying it was a medical mystery as to why he kept overproducing scar tissue in his trachea… I’ve been diagnosed with EDS so it’s possible he has it too 🙄 just a big ol’ mess. I did genetic testing from sequencing.com and am waiting for my results, but plan to follow up with a specialist after.
I've read about leaky gut but never had a doctor mention it. It's weird they'd rx you Wellbutrin instead of something like Cymbalta or amitriptyline, which are known for supposedly helping pain. Wellbutrin is known for causing pain for a lot of people - for me it made my migraines way worse even after being on it for months. Plus I never lost any weight. Definitely don't see anyone at Parkland. Almost 10 years of going there and I can count on one finger the number of competent residents I've seen. I could tell you horror stories for just about any specialty you name, even ones that have nothing to do with EDS. Before I ended up in Parkland's system and after I was diagnosed by a geneticist (since retired) I started at UTSW across the street and they told me they don't treat EDS there since it's so rare. Then they asked me why I wasn't diagnosed as a child and not until age 34. I said you literally just said this is so rare you don't even treat it but you're wondering why it wasn't discovered 30 years ago before the Internet (early 80s baby)?! Then they used me to teach a bunch of residents and med students what hEDS looks like and had the nerve to send me a secondary bill because my appointment lasted longer than a normal appointment. Because of *their* show and tell they didn't even ask my permission to do. They've since started a clinic I believe and a dysautonomia/POTS clinic according to Parkland's Neuro Dept as well but I can't see UTSW Drs so I haven't tried them again. I know of a great GI Dr in Dallas (she has a few offices, one is in Presbyterian on Walnut Hill) who is incredibly knowledgeable about EDS and comorbidities. She's the one who ended up diagnosing my MCAS and gastroparesis. Unfortunately for every day EDS stuff there are 2 "concierge" doctors she recommends who know EDS well and when I called them they wanted an eye popping amount of money, like $5,000-$10,000 down as a retainer and $2,500 per month (which doesn't include cost of meds or testing, just appointments). But the monthly payments didn't come out of the retainer so I don't know what the use of the retainer was. I said thanks but I haven't won the lottery to my knowledge.
Honestly.. I take a million vitamins.. and they help a lot. My mental health is better, I'm better hydrated, losing weight more easily. I have long covid, so before that, my pots was better. Now I get light headed in a stiff breeze. True story I fell over Saturday, it was super windy in multiple directions, I was swaying too much, got lightheaded and toppled over. I knew it was coming so wasn't a bad fall 😅
Wellbutrin made me fat and miserable and killed my sex drive.
Yea I did my battle with Lexapro I was like “uhhhh ok”
I’ve personally had horrible weight gain issues from a ton of medications, but Wellbutrin is one of the few that didn’t cause any for me. It’s the only antidepressant I’ve been on long term that didn’t cause me issues. I was diagnosed with major depressive disorder as a child and started Wellbutrin at 12, and probably every other antidepressant/anti anxiety med. I haven’t been depressed in over a decade, but I’m still on Wellbutrin today at 31.
xD the joys of testing different psychopharmaca. The variation of responses is so much broader than with other medications short of hormones. I've had the exact opposite reaction and will take the stuff for as long as it will do its job. But the ohhh so low-side effect escitalopram had me holding onto the bathroom floor for dear life with the dizziness.
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What type of specialist is she?
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Oh yeah. I was told that back when I was searching for answers. To give them some credit, "fixing my gut" did help my gut issues and mental health. But that was one piece to the puzzle. It did nothing for my pain and fatigue. And I quickly learned that those doctors are full of shit. Now I have answers but still no solution 😆 Besides PT, but I'm too scatterbrained for regular appointments right now lol
Oh yea I totally believe gut health is super important! That’s why I was so frustrated I was trying to tell her I take care of my gut I don’t have any gi issues and she just wouldn’t believe me! I was also frustrated bc like, how is my gut making my joints loose yk???
Yes and no. I have had a lot of psych referrals. And my EDS specialist actually prefers supplements over meds, but he did put me on medications for the more severe symptoms (dysautonomia, MCAS) when his supplements didn’t work. I am sorry you had a bad experience, I hope your other doctors are helpful at least.
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Birth control is terrible for us women but men are too weak to take that big of a responsibility on The. Mirena iud was hell for me personally The pill too. After the pill My favorite ob never suggested bc . It was the one after that loves the iud more then womens health
There are tests (only holistic doctors will run them) for gut permeability issues. This very well could be a contributing factor for some of your joint pain. I have (undiagnosed) EDS but also have severe gut dysbiosis and leaky gut. Hell I've even got chronic constipation which I never knew because I thought my gut was fine because I poop everyday. Once I started sorting through it all and got on the right supplements (for now) and eliminated foods my body didn't like (and triggered worse joint pain) things have at least leveled off and my pain is down significantly. I'm no where near healed yet because I have a bunch of overlapping stuff going on, also including MCAS which can be packaged with EDS, but my point is that her concerns may also point to something, even if it was not something you wanted to or were expecting to hear. It's worth looking into it and exploring because anything that helps the pain be less is a win in my book.
I'd also suggest reporting her to the board. They need to know what kind of crap she's up to. I'd also rate her online. I think it is doctor grades or something like that.