r/ehlersdanlos

So I don't have the best introception, or bodily awareness, but over the past few years I have been working very hard to better understanding what's going on with my body.

Sometimes I just kind of feel like garbage, but without a distinct cause. Like, nothing big is identifiable as wrong, I'll just hit a point some days where I'm just done. Not a headache, but maybe a little light headed or pressure. Not debilitating fatigue, but everything feels like a little more work. Maybe a little more achy, maybe my stomach feels kind of off. Etc.

It just feels like maybe everything is slightly above baseline. So there's nothing distinct to point to, but overall I just feel poorly. Does anyone else experience it? How would you describe it? Can you pinpoint a cause?

I’ve been doing PT for two years. I did four months of pool PT and then after my hEDS diagnosis switched to an EDS knowledgeable PT. I did PT with him for eight months before stopping due to insurance but continuing to exercise and do the PT on my own and going back when insurance allowed. Ever since starting PT my leg muscles specifically have severely atrophied. I know I have other issues but I worked hard to fix them and everything except for GI is under control…for the most part. I exercise 2-3x a week and walk an average of 4,000 steps a day. At this point, my PT told me to get custom knee braces but is this something anyone else has experienced? Exercise with no increase in muscle?

I have eds and plenty of comorbidities. I’ve had over ten surgeries, broke over ten bones, literally survived having a brain tumor removed at four months old and people always comment on how strong I am.

I’m autistic and so traumatized I literally probably don’t remember more than forty percent or more of my life. I am strong because I don’t know another way to live. Anyone else?

those with heds, how the HELL do you help back pain? it’s been absolutely killing me and i can’t seem to help it in the slightest. thank u!! (bonus points for my hip joints too)

the person who gave me the cold is completely fine yet I could hardly feed myself...

too exhausted to stand more than a minute or two, coughing my lungs out, ears itching, too nauseous to drive, etc etc.

I hate getting sick because I become unable to do anything other than sit/lay there.

and to top it off I got my period 2 days into it....

I'm looking for recommendations on compression leggings or stockings. I currently combo knee high socks with knee sleeves, I was recommended compression to over the knee and it is what I had. It works well enough, but I need something that won't keep sliding down on days where I'm walking around more. But they can get quite expensive, so I was hoping for suggestions before purchasing.

Side note, I included leggings because everyone seems to swear by them, but am unsure about it not extending over the foot since I get blood pooling. Would it be ridiculous to pair the leggings with my compression socks?

Started experiencing things at 8 years old. Periodontal issues, cardiac issues, hernia, tarlov cysts and constant stomach issues.

Over and over again, I was the problem. An 8 year old child was the problem, a teenager was the problem, a young adult was the problem.

Strange mix of emotions now we’ve finally reached this point, but I’m blessed and it doesn’t define me.

If anyone else is still searching for your answer- don’t give up and you deserve to be heard. You know your body better than anyone else. Sending you all love

I love being outdoors and it’s a very big part of my communities culture. My problem is I can’t squat to pee anymore 😩 Last time I almost didn’t come back up and had muscle spasms in my legs. My lovely partner has offered to hold me up but I want to keep my independence.

Im looking for something I can use standing. It needs to have a comfortable handle and preferably a lid. Please help a girl out 😂

As a grad student turning 28 next week, pretty much everyone around me spends their free time at run clubs, or running along our local trails, or talking about their pace or their training schedule or their upcoming races.

But my knees and feet just can't take that kind of stress anymore, if they ever really could. I've recently realized how much I need to protect my knees especially. I'm still active (long walks with my dog, hiking, pilates 3x/week), but not the types of things my friends are doing. I was wondering why I've been feeling more and more lonely, and I realized it's because all my friends are hanging out without me on their runs.

I know that I have so many other things in my life to be grateful for, but it's just so hard to not be able to join the activity that is the number one way to make friends in my demographic where I live.

I've been told by at least 5 podiatrists now that I need surgery on both ankles. The most recent one specializes in hEDS, and my mobility has diminished to the point I'm thinking of finally doing it. I'm 35. I have a doctor I trust. It's time.

The plan is to lengthen my Achilles (which is so scarred at this point it's creating a lot of plantar fascia problems), put in artificial ligaments (Internal Brace), and do an arthroscopy to "clean out" the joint. First left, then right, taking it slow. My doctor has me doing PT months before surgery to strengthen my core and right side for recovery.

Has anyone had similar procedures? What was your experience and recovery like? I've been terrified of this surgery since it was first proposed over a decade ago, but I'm losing my ability to enjoy life, so I'm trying to build up the courage.

I'm currently really struggling with constant flares with my EDS, chronic pain, unable to sleep, muscle spams, dislocations and my herniated discs in my neck seem to play up while in a flare and also suspected MCAS and crohn's... really can't win! 😅 I've been given naproxen and omeprazole that do absolutely nothing for me, I'm allergic to amitriptyline. The only thing that's worked for me is Co-codamal but my last GP told me to take with the amitriptyline (I was on cocodamal beforehand) and took me off the both of them when I said about my allergic reaction so now I'm stuck with nothing and none of the doctors in my GP seem to have a clue as I'm sure a lot of you are the same as me I might as well be popping sweeties with paracetamol and ibuprofen. Has anyones GP prescribed them something that actually works? t.i.a

Hi! I’m 28, was recently diagnosed with hEDS and I have my first appointment with a rheumatologist during the week. I won’t lie… I’m really scared. My joint instability has gotten really bad the last 2 months, especially my knees and I’m terrified the dr won’t know how to deal with hEDS or maybe won’t believe me cause “I’m young”. I haven’t found any that specializes in EDS cause there aren’t many resources for it in my country.

Every scenario is going through my mind and I’d love to know if you have tips for how to go about the appointment. if maybe I should list my symptoms to make it more understandable or idk, anything would help. Thank u!

Anyone else feel like their muscles are always working overtime to hold their bodies together and like their head could just fall off their body if they let their neck muscles truly relax? I can’t even begin to count how many times someone has told me to relax something like a limb they are holding and all I can say is I AM!! I’M TRYING!!

Does anyone else diagnosed with EDS, experience random tooth pain? I get tooth pain randomly, even though my teeth have been checked and there's no cavities. Doesn't seem to be any gum disease either.

They sit awfully cramped and sideways under xray seeing it due to the EDS of course, but it doesn't feel like the wonkiness is the pain as it doesn't feel like it's deep in the gum. It just feels more general gum/teeth pain.

I do also have a rubbish bite where the teeth all jank together so that doesn't help. Of course, the inevitable TMJ too.

I did say to my dentist it's probably just my EDS being random as it always is.

I did see the x-ray myself and had a very good look, and was happy that I couldn't see anything cavity or rot wise or anything.

One day it'll randomly be one tooth, and that'll hurt for some days on and off, then another tooth randomly on and off.

As I say, I've been to the dentist and there's no cavities or any concern with the teeth.

I did consider getting braces, but after research and deliberation before, it seems like a painful process (and paying out of pocket) when I'm in my mid 30s now, and that they would shift back overnight or within hours as soon as the braces were taken off after years of effort (I've read some of your EDS teeth brace stories throughout the subreddit history). I can't imagine the mouth sores and pain with EDS skin (and mouth) being so fragile to cuts and scrapes from the wiring in the mouth.

I'm not really looking for any solution as I don't think there is any tbh. Just seeking if anyone else relates in the "high 5 Zebra club"

Just in case it's relevant, I'm in the UK and see a NHS dentist.

Does anyone have any hacks/tips/treatment options for hip instability and pain especially when sitting?? I’ve recently hit peri menopause and it’s been an absolute nightmare for my hEDS (HRT has helped curb it some but it’s still worse than it was before the hormonal change). My hips are probably the most hypermobile part of my body and consequently are suffering severely. I’ve become aware that even when I’m just sitting on the couch or bed watching tv my hip and butt muscles are bracing constantly and then I start getting painful spasms that go down into my thighs and up into my low back. I’m planning to ask my pain specialist about a muscle relaxant next time I see her but I’m wondering if anyone else has this issue and has found a way to alleviate it at all??

I'm having a fasciotomy soon for a hernia and I wanted to hear what other people's experiences were with a fasciotomy. I'm mostly just wondering what recovery was like for you and how the surgery went. I'm still talking with my surgeon about it and I haven't gone in for pre-op yet. I guess I just wanted to get an idea of what recovery is like before I discuss it more with my surgeon.

I am a 26 year old woman. I used to dance since I was very young, and was always chronically ill but still always energetic, just a bit of a klutz! This was until I turned 19. First, I had some trauma, then the really bad balance issues, falls, and severe joint pain started. Skip to 2024 and I went to a rheumatologist that diagnosed me with HEDS. I have been struggling as it has gotten worse over my early 20s, so much so that I am in PT, started using a cane or wheelchair and braces for big walks/events, and overall was in pain 3/5 days of the week. I just had a pretty bad fall a few weeks ago and I feel like it made things worse, even though I wasn’t injured (I was checked over by a medical professional) I feel like I am broken. My body is aching worse and I feel unstable and now I am using a cane more than I was/on a daily basis because I keep almost falling, it’s like my body can’t hold me up. Advice? Any similar experience? I don’t know who else to go to as my rheumatologist isn’t very nice. Thanks!!

I’m due to have exploratory laparoscopy for ?Endometriosis in the next few months. I’m newly diagnosed HEDS. Any advice or things I need to speak to my surgeon about? Thank you 🙏🏼

Here is my current situation:

I am 21F, and I was diagnosed with hEDS by my primary care in the fall, but haven't taken any steps to ask for referrals regarding that yet because I had other issues that needed to be addressed first. Here I am now, and I'm regretting not asking for an occupational therapy + podiatrist referral sooner. I'm unable to get a doctor's appointment until late July, but my hand pain and foot instability have gotten exponentially worse. I'm looking to relieve my pain and get stability support asap. I do a lot of computer work (work and school), and it has been difficult to type without pain. My hands can get swollen, achy at the joints, and stiff (not in a way that counteracts the hypermobility tho 😭). I have been tested for arthritis in the past, and the it was negative. I do a lot of walking around campus, and around the house, my foot instability worsens my spatial awareness - leading to more bumps and falls. (I also have POTS, migraines that intensify the dizzy feeling).

These are things I have looked into so far:
* My insurance only covers plastic hand splints (I'm not keen on this)
* My insurance does not cover podiatrist orthopedic shoes for my condition
* making diy splints with metal that won't irritate my sensitive skin (wire is expensive! but also my hand pain is at a level where I don't think I can comfortably handmake that right now)
* My grandmother has the same conditions as I; she has seen a podiatrist for shoes, and now she wears the Asics Kayano 32. We both have narrow ankles, high arches, and midfoot and ankle instability (rocks back and forth). She likes them.
* I do simple hand stretches when I take breaks from the computer. Although I'm not sure if I'm doing them right or if I'm just making my pain worse?

My frustrations and where I could use some recommendations:
* Affordable/sensitive skin-friendly metal finger splints (My priorities are thumb and index fingers for now).
* Affordable and/or cuter options for orthopedic shoes that address (as much as possible) the same issues the Kayano 32 does. I know this can be a big ask, I searched around. I just get sad when my health impacts my self-expression and fashion. I wish medical devices were more fashionable; it helps me feel more my age :(.
*Recs for orthopedic insoles (I'm not sure what to get)
* If anyone has experience with seeing an occupational therapist for hand issues, what did they recommend to you (exercises, habits, orthotics)?
*Computer setup/ mouses for hand pain?

I appreciate any helpful advice! Thank you!

I just got diagnosed today with hEDS (pending genetic testing and ruling out other autoimmune stuff doctor is sure I don’t have) and I have roughly one thousand thoughts and questions!

Here is my list of things that I wonder if they’re related to EDS:

Very high pain tolerance

A history of severe belly pain, unexplained even after CTs etc, that requires IV pain meds in the ED when it gets bad

Waves of exhaustion throughout the day

Mental health stuff- history of pretty intense OCD, depression, anxiety, cptsd

Diabetes, fatty liver

Feelings of brain fog- using the wrong word both in speaking or reading aloud, word finding difficulties, memory issues, dissociation….

Arthritis in my knees and ankles

My knuckles crack constantly and my knees crackle sometimes when I walk. One knee can kind of pop out

Other info: I got a 7/9 on the scale

Concerns I have! I’m a nanny which is a fairly active job. I’m worried at some point I won’t be able to continue. But it’s the only thing I’ve ever done and I’m good at it.

Gymnastics! I started adult gymnastics again a year or so ago (I’m 40) and I LOVE it. We are currently on a break because a month ago I fell off high beam and sprained my ankle badly. My OTHER ankle had apparently one working tendon. I’m worried I’ll never be able to do gymnastics again, either.

I don’t think I have exactly specific questions but I would so so so welcome any thoughts about any of this! Thank you!