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Have you ever told someone you dislocated a joint, followed by “it’s fine, though?” Or maybe you grew up thinking everyone was as flexible as you, or got really dizzy when they stood up quickly, or that everyone was in pain all the time... until you realized you weren’t the “norm.” This group 100% gets it. Whether you have an official diagnosis of EDS or HSD or not, you don’t have to explain the ins and outs of what life with Ehlers-Danlos syndrome is like when you’re here — we understand, we’ve been there, and we’re here to support you.
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what do you guys do to ease respiratory symptoms like a heavy chest feeling and need to cough?
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Community Voices

For those who have had orthodontia, did it cause you any jaw pain?

I'm in my 50's and recently got braces to correct crowding teeth and fix an open bite. But after 4 months, I have non-stop excruciating jaw pain. I don't know whether to have them removed or wait it out, but I'm concerned about doing jaw damage that will leave me in chronic pain.

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Community Voices

Family

So in regards to family, my eds is a new genetic I’m also not bio related to my dad so I don’t know but my fraternal twin does not have it either which has made my mom literally almost incapable Of believing me.. she Has ms she always told me her biggest fear was me having ms, but I just don’t I have eds I’ve clearly have had symptoms since childhood but when I asked my mom flat out she just didn’t believe me she thought I was more finding a thing to use as an excuse I’ve sent journals, websites tried to educate but it seems because it’s not the same disease and she’s never heard of it I’m just attention seeking … but once I figured out what was going on with me and was diagnosed I finally didn’t feel crazy and I wish she was supportive.
What’s your interaction with family you guys?
Thank you in advance :)

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Community Voices

How have you explained to people why everyday is so different with EDS? Why some days are good and others not?

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Community Voices

Happy Friday..

I woke up this morning with a migraine and my rib cage subluxating, which is definitely not how I wanted to start my Friday. I just want to crawl back in bed and cuddle with my dogs but I have to be at work. I hope you all are having better starts to your day than I am 😅

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Community Voices

You know you’re an EDS patient when…

<p>You know you’re an <a href="https://themighty.com/topic/ehlers-danlos-syndrome/?label=EDS" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7a00553f33fe991e01" data-name="EDS" title="EDS" target="_blank">EDS</a> patient when…</p>
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Community Voices

Stretch marks?

Do any other HSD/hEDS young people get more and more stretch marks all the time even though nothing appears to be changing with t their body size wise? I’m 18 and I’m not growing anymore and I haven’t been gaining much weight, but I keep getting stretch marks in strange places? I know stretch marks are a part of hypermobility disorders, but it just seems a bit excessive… Are they going to slow down/stop? Is there anything I can do for them? They fade pretty well, but it would be nice to help my skin out by stopping them from happening so much :/

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Community Voices

Bowed legs w/eds + treatment

(Long post, sorry!) I have bowed legs, and they are extremely painful. My knees hyperextend and are between 4-6 inches apart when my feet are together. My doctors have said that it isn't something to worry about, but it's progressed. They've also said to try not to stand with my legs fully extended because they want to see if they will correct themselves (it also hurts really bad). In the past 10 months, I have fully straightened my legs a total of 5 times give or take. Standing with bent legs has its own problems too. My legs are very unstable and buckle back and forth since they are not "locked". It is also not comfortable, I mean, I'm used to it now, but it is not ideal. A little less than a year ago, I was diagnosed with hEDS. Is this common in people with hEDS? I'm also wondering what treatment I should seek. Is it worth it to have surgery? I am an adolescent and play many sports; I don't know if the recovery time would be worth it or not. Thoughts?

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Community Voices

When flying how do you stay comfortable?

I just flew home from a Memorial in Manitoba, Canada which is a 2 1/2 hour flight and I thought that my pelvis, hip, neck, and spine were going to combust! It was so painful. Any suggestions?

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Community Voices

# Ouch!

# my left hip went out of place on me and I was just standing still . Darn my hip and darn those subluxations! God was with me and I didn’t fall!

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Community Voices

Going for an EDS Diagnosis

Hey all, I hope this is allowed (I don't think I saw anything in rules to say it isn't), but I was looking to get some thoughts on what I think may be EDS (perhaps hEDS) and my next steps.

This post will probably be pretty long, so I apologise in advance for that.

So, I was diagnosed with Fibromyalgia about three years ago. The GP also thought I could have ME. Generally speaking, I have been in constant widespread (joint and nerve) pain for the past 15 years, but every few years I seem to deteriorate further.

I haven't experienced dislocations, but perhaps subluxations. I honestly am not entirely sure, though I feel like I should be. My joints are extremely tender, get worse with movement, and I click frequently (which seems to also cause pain).

I don't have stretchy skin and I'm overweight. Basically, what I'm saying is that I don't believe I will be listened to by doctors because I don't fit the generalised view of EDS.

I also didn't think I have EDS (a few of my friends do) until people started mentioning the possibility to me. After having done a lot of reading, I'm starting to see it might fit, but I've experienced so much invalidation, weight shaming, and placing blame on my mental illness from so many GPs now that I'm scared to seek help. As such, I've decided to raid the little house deposit savings I have and seek a private diagnosis, in the hopes I can be referred back to the NHS for treatment.

So, I guess what I'm looking for from the group, if possible, is some thoughts on whether you think my symptoms align with a diagnosis of EDS. I'll list what the worst ones are for me below:

Injuries: last year, I herniated my disc from simply turning around on the sofa. I've been in constant pain since and am due to see orthopedics next week.

Bladder Control: a year or so ago, after experiencing bladder issues for years, I lost a lot of my bladder control. I need to pee every few minutes, though when I try, it often takes a long time to actually be able to, and I've had to wear pads now for months due to a lot leaking. Sorry if this was TMI!

Possible Subluxation: a bone recently popped out in my wrist and has been painful and tender for about a month. I've been too scared to go to the GP. I eventually tried pushing it back in myself and it seems to have shifted somewhat, but isn't exactly as it should be or was before.

Digestion Issues: I've long believed I have GERD (silent acid reflux), but only recently discovered those with EDS often have digestive issues. I had a really bad episode, lasting six months two years ago, but it dissappeared with only a few symptoms remaining. I am currently going through two months of not being able to eat (or even drink water) without belching, dizziness, bloating, gasping for breath, heart palpations, etc. I'm so, so uncomfortable and scared to eat. I've been told by friends who have it that this also sounds like POTS (I also experience a lot of dizziness upon standing) and MCAS.

Food Allergies or Intolerance: this one has been with me since I was a child, but the foods I can eat without symptoms are becoming less and less. I recently discovered soya is a big no-no, feta recently made my mouth swell up after years of tolerating it. The list goes on.

Mobility: honestly, this is where I tend to gaslight myself because I'm overweight, but I know other overweight people who don't live like this, so I'm trying to be kinder to myself and validate what must be something physical. So, I try to walk from the car to work (I am a jewellery maker and have my own studio, so can luckily work to my own pace). The walk is roughly ten minutes, but it is enough to cause a flare-up for the rest of the day. That said, walking is infinitely less painful than standing. Even before my back injury, I have long (maybe the past 10-15 years) experienced severe pain in my lower back when standing. The only thing I've found to help with this is if I sway gently from side to side. The gentle movement seems to help me stand for a little longer, but it's still agony.

Issues Sitting: I don't know if this is anything to do with EDS, but I have been unable to sit upright on a sofa or most chairs for longer than a few minutes without experiencing severe pain in my lower back and legs. I often cry because I want to sit up, but I always, always have to resort to lying down.

Joint Pain: All my joints seem to hurt, but the worst is, by far, my hips. As a side sleeper, I find it terribly painful to try to sleep at night. It feels like I'm lying on a brick! Ive also had an extremely tender ribcage for the past two-three years, so much so that now my partner can't cuddle me without excruciating pain and pressure.

Weakness: again, I'm unsure if this is related to EDS, but I haven't been able to hold a book for about ten years, maybe longer, because I physically cannot bare the pressure it puts on my wrists, the weakness it causes in my arms, and the pain it causes in my neck and shoulders. As such, I read, lying down, with a Kindle. It's the only way it's manageable.

Uff, I'm so, so sorry! I know this has been an essay! I just wanted to provide as much information as possible in order to get some feedback.

Looking at the EDS diagnosis, I'm pretty uncertain if I have it (some questions I don't understand, others I don't have answers for), but reading about EDS in forums, talking to friends with it - that's when I start to think... this could be it.

I guess I'm wondering if I'd be wasting time and money to see a specialist when this might all be something else.

Thanks so much for reading. ❤️ #EDS #EhlersDanlosSyndrome #HypermobileTypeEDS #ChronicIllness

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