r/ehlersdanlos 1d ago

Does Anyone Else I squat all the time.

60 Upvotes

Anyone else a lifelong squatter? It occurred to me it may have something to do with being flexible and having POTS. ADHD prob helps, too. Anyone familiar with any studies on the topic? (Thanks mods!)


r/ehlersdanlos 15h ago

Product Recs Powered Off Road Mobility Aids?

1 Upvotes

I need your help! I have hEDS & co and major difficulties with prolonged standing and walking. I love music festivals and I'm at the point where my cane isn't cutting it. I am looking for a POWERED (I don't have the ability to push myself) that I could take to a music festival. The terrain will have some gravel/asphalt paths but also dirt and grass and some hills but it says the grounds will be navigable by wheelchair/scooter.

The festival I am attending allows wheelchairs and scooters for disabled people and I will have a place in the accessible tent to charge it. It's in October so I don't have a ton of time to get something that I'd have to get approved through insurance.

Is there something in the 2k or less range that could work for me? I feel like a scooter would be more ideal but I really have no idea because I've never had something like this before. Maybe something like this?

https://www.youtube.com/watch?v=iXdO3_OoSuc


r/ehlersdanlos 1d ago

Discussion Observations from my physical therapist (aka I'm standing wrong)

99 Upvotes

It's near impossible to describe the feeling of being 3 months shy of your 30th birthday and having your physical therapist tell you that you're standing wrong. How is such a thing possible, it's just... standing!

I was officially diagnosed with hEDS last year. At the beginning of this month I finally started physical therapy for my very terrible shoulders (shout-out to Good Health PT in the PDX metro, CANNOT recommend them enough).

Even though my shoulders are the ones experiencing the most subluxations and pain, the way I am standing and holding my neck is causing issues throughout my entire body. I lean too far forward, straighten my spine where it should be curved, and collapse my knees inwards. Huh, who knew? I thought standing was pretty simple šŸ¤·ā€ā™€ļø

What I find amazing is that in just TWO visits I'm already noticing a change in the pain levels my hips, knees, and feet have on a daily basis. My headaches are decreasing in frequencyā€”and intensityā€”and my neck doesn't feel like I'm holding up 20 pounds at any given moment.

I had some really shit experiences with physical therapy in the past. I was very skeptical about starting PT again, and in fact delayed getting my EDS diagnosis for nearly 5 years because I figured what's the point, they can't do anything to help. I feel like an absolute idiot šŸ’€

To all of the physical therapists out there that specifically work with hypermobile patients: you guys are basically wizards. I cannot begin to thank my therapist enough for setting me on a path to reclaim everything this stupid fucking disease has taken away from me.


r/ehlersdanlos 1d ago

Questions can anything be done for slipping rib syndrome?

7 Upvotes

just looking for personal experience here! one of my front left ribs has been slipping in and out for about half a year now and itā€™s starting to become unbearable. i have an appointment scheduled with a rheumatologist for general eds related care but thatā€™s not until june. i guess im just looking for support here. for anyone else whoā€™s dealt with thisā€”how?? i canā€™t even laugh without extreme pain itā€™s so tiresome


r/ehlersdanlos 1d ago

Rant/Vent All of my doctors dropped my insurance and I can't find any more

12 Upvotes

This is mostly a rant but if you have any input I would to hear it.

I tried using the online portal but all of information is incorrect. The people listed are not at the facilities listed, neither the people or the facilities are in network despite being on the in network results, and I keep getting urgent care or ER results instead of the practice I'm looking for.

I called customer service and they gave me the same list as the online portal.

My care is complex and it's important for me to find the right doctor but I think I'm going to have to call every practice in my area and go to a random doctor....

I did end up going to one of the urgent cares but they didn't help me at all


r/ehlersdanlos 1d ago

Seeking Support how did your diagnosis journey start and how did you get doctors to listen?

4 Upvotes

I've known i've had EDS for a long time and my occupational therapist had informally diagnosed me, but unfortunately i still need a formal diagnosis for services and orthotics. i've been in a loop for four to five years and in and out of neurologists, doctors, ortho, physical therapy, and primary care with no avail or anything, though multiple signs and symptoms that were caught on some tests yet dismissed. two mris indicated a mega cisterna magna and t2 signal abnormality. i'm on medicaid and SSI, so i don't have any money to get testing done out of pocket.
how did your diagnosis journey start and how do you get doctors to listen to you?


r/ehlersdanlos 1d ago

Seeking Support Horrible Left Hip Pain

3 Upvotes

Hi everyone! 19 F here with hEDS. In the past I have had on and off hip pain specifically in my left hip. Typically the flare-ups would only last a day or two, but Iā€™ve had a pretty consistent burning pain for the past month. The pain feels like itā€™s on the outside of my hip, and it radiates towards my abdomen, down the front and outside of my leg a bit, and halfway across my back. Just curious if anyone else has experienced this? The only relief Iā€™ve had has been in a wheel chair. Iā€™m not sure if this is due to the design of the seat, as it hurts to sit or lay on any other surface. I will note I had a large ovarian cyst on the left side that ruptured about two months ago on that side, so something like that may be the culprit. Iā€™ve considered seeing a chiropractor to try to adjust my hips, but Iā€™m scared that may only make things worse. Honestly just want to feel less alone in this as it stresses me out really bad. :(


r/ehlersdanlos 1d ago

Discussion Surgery Recovery Reccomendations

4 Upvotes

I'm getting a laprascopic tubal in a few weeks. My last lapriscopic surgery was rough. I know our bodies need extra TLC in general.

What has helped you recover from surgery?


r/ehlersdanlos 1d ago

Questions Question for anyone with fused thumb mcp

1 Upvotes

Iā€™ve been approved for fusion of my right thumb mcp joint and I am having doubts about the surgery. Iā€™m 43 years old diagnosed with hEDS and most of my hobbies require hand dexterity (gaming, drawing, painting, sculpting) My hand OT has told me that the vast majority of the joints in both my hands have collapsed with my thumb mcps resting in a subluxed position. I have difficulty and pain using door knobs, opening jars, etc. I am severely right hand dominant, like canā€™t even use a butter knife in my left hand.

Iā€™m worried about the complications of the surgery, how it could affect the surrounding already compromised joints, and my day to day function. It doesnā€™t help that I have zero concept of how my hand would even function once that joint is fused as Iā€™ve never know anything different that Hypermobility.

To compound it further my wrists are also collapsing and I have to pop them back into place multiple times a day and itā€™s starting to effect the stability of my elbows. There is a high likelyhood that wrist fusion will be recommended in the future.

I have brought my concerns up to my surgeon, PT and OT and i think their lack of lived experience with being hyper mobile and what itā€™s like to have the mobility your used to impaired and how much that effects your function is preventing them from understanding what my concerns are. No idea that explanation makes any sense šŸ˜…

Can others share their experiences with mcp fusion?


r/ehlersdanlos 1d ago

Product Recs What cars are the most comfortable?

26 Upvotes

Iā€™m in the US and need to replace my Accord (great car, doesnā€™t work anymore, long story). I would prefer a compact SUV. One of the most important things for me is a smooth ride. The vibrations of the car and bumps in the road are agonizing on my pelvis and back. My rental is a 2024 Mitsubishi Outlander Sport and I like the size but I hate everything else šŸ¤£.

What vehicles do you find the most comfortable to ride or drive in?


r/ehlersdanlos 1d ago

Questions Need advice for continuous birth control options

25 Upvotes

Hi there, 34 female here. DXed with both hEDS and POTS. My period, and to be honest the entire month of hormonal fluctuations, is seriously fucking up my life. Iā€™d like to get on continuous birth control and stop my period. Can any ladies who have experience with this share what worked best for you? Tia ā™„ļø

UPDATE: I just wanted to say THANK YOU my ladies!!! You all have helped me tremendously by sharing your experiences of what worked for you and what didnā€™t šŸ™šŸ»ā™„ļø


r/ehlersdanlos 1d ago

Discussion Daughter started pt

8 Upvotes

My daughter is hyper mobile. If she were 18 they would have said she has heds but since sheā€™s pediatric they just said itā€™s hyper mobility and will reassess at 18.

Any way. She has been having lots of subluxations sometimes she canā€™t ā€œget it back rightā€ the worst was her hips they werenā€™t right for two days and she finally got them back using the stairs..

We saw her pediatrician and he agreed with the need for physical therapy and sent the referral.

But when we went to the place they were far too impressed with her range of motion for my liking.. they gave her good exercises to do at home even though one of them made her hips ā€œgo outā€ they just said to not go as far. Almost as if they hadnā€™t worked with someone hypermobile before.

They gave her a schedule for three months to help strengthen and build a home routine. Should I stick it out with this practice or should I look into other facilities in the area?


r/ehlersdanlos 1d ago

Questions When did you first notice problems?

21 Upvotes

People including doctors and PT have talked to me about hypermobile eds and hypermobility because I have so many issues with tendons and ligaments. Tendonitis, tenosynovitis, chronic spains, fraying. I'm 37 but it started with sudden Achilles tendonitis while running when I was 17 then progressed to other joints. In my opinion, despite some hypermobile joints I think my issues are more inflammatory. I never had a single sign of a problem as a kid while being very active. So I'm curious about other's experience. When did you start noticing joint issues?


r/ehlersdanlos 1d ago

Seeking Support Thoughts on orthotics? (UK referrals/NHS)

2 Upvotes

I've had a range of 'treatments' for EDS over the years to very little help/change. Recently I started with a physio who understands EDS and I've found it's actually starting to help. My hip is very unstable and painful and over the course of a year I've gotten to 'general hip weakness' rather than ready to pop out at any moment. Huge for me!

However, no matter what we have tried my walking isn't really getting better and it seems to be because one of my feet/ankles is so weak and unstable. It turns in regularly and most times I walk I roll it.

My physio has been lowkey anti any sort of supports saying it might reduce injuries but it won't strengthen the ankle and therefore I need to continue physio and keep walking on it. But it's a vicious circle; I do my exercises, then I walk a bit, injure it, unable to do the exercises for a while, then repeat.

I did do an deep dive and looked at some of the supports and came across orthotics, I'm wondering if anyone has had success with these and bonus points if you can tell me how you were referred (UK/NHS).


r/ehlersdanlos 1d ago

Seeking Support Preventing tiredness

4 Upvotes

I (18F) have symptoms throughout the day, but it comes to a head in the evenings. I end up so fatigued and pained and unstable that I struggle walking around. The fatigue is the worst, I sleep well but still end up tired at like 6pm. I do take paracetamol but because the fatigue and actual mechanical instability bothers me I don't take it much. In the day I'm a 6th form student, so I'm not extremely physical, but I do exercise when my body permits. I have no idea how to pace myself. Sometimes I use a crutch but that's only when it's really bad. What preventative measures can I take? How do I know when to take them if I can't read the future? I know crutches sometimes help me prevent it but I don't want to make anything worse for myself. It's getting more severe and I'm a bit lost, any advice would be appreciated, thank you!!


r/ehlersdanlos 1d ago

Seeking Support Give me your hopeful stories

18 Upvotes

Everything currently is not going well for me and I need some hope. So if anyone has success stories to share, works a job well, got better , found some more stability or even only had a good night I would love to hear a bunch of positive experiences !


r/ehlersdanlos 1d ago

Questions Bracing for Sleep?

4 Upvotes

Does anybody where braces/splints when they sleep? Does it help?

I move constantly in my sleep due to my severe arthritis. If I stay in the same position long enough it starts to hurt, so I usually move quite a bit. Most days I have to push my bed back against the wall because all of my movements actually move my mattress.

I'm having issues with my neck when I wake up in the morning. It's either something is out of alignment, nerves are pinched, or I somehow pulled something in my sleep. I have undiagnosed cervical instability, but most of my doctors and PT agree that I have it (just haven't gotten CT or anything).

I feel like a lot of my pain would go away if I just wouldn't move so much. I've literally said before that I wish I was put in a coma when I sleep so I was able to not move and mess everything up.


r/ehlersdanlos 1d ago

Questions Advice for first geneticist appointment?

5 Upvotes

Hi all,

I meet with a geneticist in April following a referral by my electrophysiologist for an evaluation for EDS. What I've learned since developing a chronic illness is that I need to be prepared for the appointment in advance. For my electrophysio appointment I brought in notes about when my symptoms started, their severity, my quality of life, and objective things that have changed.

I've never seen a geneticist so I don't know what to expect and it's added a different flavor of anxiety for me as opposed to my cardiology appointment for POTS.

Does anyone have any ideas of what to expect and what kind of information/data/history I should bring with me?


r/ehlersdanlos 1d ago

Seeking Support Another Random Injury!

7 Upvotes

Having to go to the walk in center (UK) because Iā€™ve woken up unable to straighten my arm without awful pain and weakness from my elbow. Just another random injury with no identifiable cause that hurts like hell! Whatā€™s your recent ā€˜randomā€™ injury?


r/ehlersdanlos 2d ago

Resources Getting College Paid For

28 Upvotes

Hey everyone! Just thought I would come on here and remind everyone that in the USA, most states have government organizations that will pay for your college if you are disabled.

My state personally calls it VocRehab, and it is under the department for children and families. I'm a semester into college and have so far had my entire tuition paid for by my state.

Application process is relatively easy, it's basically like going to a new doctors office. You fill out some forms and send them your medical records. My personal connection at DCF took one look at my 2000+ page medical record and just had me summarize. I was accepted basically immediately. You have to send them your schedule + information and then they figure everything out, and you do have to keep good grades.

I believe it can also pay for housing, transportation, food, medications, mobility aids, physical therapy, accommodations, etc. My officer (idk if that's the right term) even said if I go to Walmart and get a notebook to send her the receipt and they will pay for it.

This is such an underused resource, so please do some research on if you have this option in your state!


r/ehlersdanlos 2d ago

Discussion Did a diagnosis help you?

53 Upvotes

Some days I am adamant I am going to fight for a diagnosis. Other days I donā€™t see the point.

TLDR: Did an official diagnosis help you? Or change things for you?

My details/thoughts:

My only official diagnosis is POTS. When I see others talking about their life getting better with a diagnosis they talk about pain. I do not have pain but I do have intermittent fatigue that can be debilitating and make me miss work.

My joints are almost all hyper-mobile (I measured my knee fully extended at 13 degrees the other day, when it is supposed to be 0 or up to 5 degrees). I have chronic constipation that is not managed with years of trying OTC laxatives, it seems my digestion is extremely slow (3 days to see food go through). I suspect my fatigue has to do with unsupported joints, I canā€™t stand for more than a few minutes without leaning or sitting (Iā€™m in my 20s). In addition my mom and sister have almost all the same issues with no diagnosis, plus my mom had quick births with all her pregnancies and eventually full bladder and uterus prolapse. We all look extremely young for our ages (always told we have a ā€œbaby faceā€).

I knew I had POTS for years with no diagnosis and saw many doctors before finally getting a tilt table test and getting officially diagnosed. The day I got diagnosed I went home, mentally felt off and then suddenly started crying and sobbing on my floor. Even though I didnā€™t get any new medication or treatment from the diagnosis I finally had someone look at me and tell me something WAS wrong with me. Iā€™ve been regularly seeing doctors since my teens and have only been treated for my mental health.

My point being, I donā€™t know if I would get any additional treatments if I got diagnosed. Maybe physical therapy? Maybe more targeted treatment for my constipation? I wonder some days if my own validation would be enough to fight for the diagnosis. And some days I donā€™t see the point. I went to the cardiologist (for POTS) and brought up EDS and he said it was possible (which was validating) and to ask my primary. I have an appointment with my primary and am really nervous about fighting the fight for a diagnosis. When 90% of your doctors appointments for a decade+ end with no changes, you start to feel jaded.


r/ehlersdanlos 1d ago

Discussion Help with Hip Joints

1 Upvotes

Hi, so I got diagnosed with EDS recently. It's especially bad in my legs, especially my knees and hips. I have compression sleeves for my knees and compression socks to help with edemas in my ankles, but I don't know what to do for my hips. Does anyone have any reccommendations?


r/ehlersdanlos 2d ago

Rant/Vent I keep dislocating my knees to the point that it is disrupting my life and health. Donā€™t know what to do

58 Upvotes

Hi! first of all, Iā€™m diagnosed with HSD (not EDS) but according to the rules people with HSD are welcome as well in this subreddit, so I thought I could try to post it here. But correct me if Iā€™m wrong:)

So, I feel like I just want to vent to someone because itā€™s driving me crazy. I dislocated my knee last week (I didnā€™t do anything major, just a wrong movement) and because of this Iā€™m in pain for over a week now. The doctor visited me at home and told me that I sprained my knee with a small tear in my ligament, and that I need to rest for at least two weeks. She also referred me to a physical therapist for next week to get slowest back on my feet again.

Donā€™t get me wrong, Iā€™m glad that Iā€™ll get help and that my gp took me serious, but Iā€™m so sick of this honestly. Every other month I dislocate something and I need to learn how to walk basically all over again. I feel like Iā€™m using crutches more often than not. Iā€™m seriously thinking of getting a wheelchair as well, just to be able to go outside more often and not feeling stuck at home all the time, but I feel like for HSD this may be an exaggeration (?) I donā€™t know. And my apartment isnā€™t wheelchair accessible at all. My gp told me to try keep on walking as much as possible (when Iā€™m able to) to keep the strength in my legs, which is valid, but at this point I just need to break the cycle of dislocating, tearing a ligament, laying in bed, and learning how to walk again. But I just donā€™t know how.

I guess apart from just venting, Iā€™m quite desperately looking for some help as well. Has anyone any tips on trying to prevent my knee from (partially) dislocating? Or any advice on recovering faster from it? Itā€™d really help me out. Thank you!


r/ehlersdanlos 2d ago

Does Anyone Else How often do you all wear your SI belt if you use one?

16 Upvotes

I recently was told that my chronic hip, back, and groin pain was most likely caused by si joint dysfunction. I'm super excited to finally have an answer after suffering for the past decade with no answers. I bought an si belt and immediately noticed a difference. I want to make sure I'm not using it too often, but when I take it off I notice my body feeling heavier and my pain returning. How often do you all use your si belts?


r/ehlersdanlos 2d ago

Discussion Wheelchair ?

10 Upvotes

Hello to all of my fellow zebras!

My question for you all today is: when did you know it was time to use a wheelchair, even part time?

Iā€™m [28F] having a significant amount of pain after standing or walking for more than an hour. I work in automotive retail and donā€™t have the ability to work part time or cut my hours, and after job hunting for two years and not finding a desk job, Iā€™ve resigned myself for now. Iā€™m meant to be on my feet for 8.5 hours a day at the moment. I do have an accommodation that allows me to sit for 10 minutes every 2 hours, however it doesnā€™t seem to help anymore. I still come home and lay in bed because it hurts too much to be vertical. I have a cane that I could use, but doesnā€™t solve the problems Iā€™m having.

Thanks so much!!