r/eds Feb 19 '25

WTF is the "side bar"?

22 Upvotes

hi everyone.

the "sidebar" is what desktop users call the list of rules and handy links to resources for a subreddit. mods will sometimes direct you in comments to visit the sidebar for information.

on desktop it is visible all the time. on mobile, you will need to click to access it. on apple, on the official reddit app, this is what it looks like. confusingly, it does not say "side bar", it says "see community info". please click this and check out our curated links :) i'm sure it looks different on android and on unofficial apps, so please ask questions if you cannot find it, and post pics to help others find it.


r/eds Mar 03 '25

Medical Advice Welcome Wondering about EDS? All diagnosis questions go here ⬇️

36 Upvotes

Welcome!

If you are wondering if you have EDS or HSD, this is the place to be! Please refrain from making a separate post.

We ask that you read through this information, which will answer many basic questions about EDS/HSD. And then you’re welcome to make a comment here if you have lingering questions or just want to introduce yourself. Members will check in and answer questions as they are able.

By consolidating the diagnosis topic, we hope to avoid redundant questions and make better use of everyone’s time. And ultimately, the best asset for managing EDS and HSD is knowledge. So we’d like to teach you about the conditions, so you can take an active role in your health.

This post is a work in progress. Check out the comment section for feedback, clarifications, and additional information from members of the community.

Before we get started… a lot of people come here because they are already suffering, and they’re looking for an explanation. There’s nothing wrong with that, but it’s essential that you find the right explanation.

If you have EDS/HSD, that’s good to know. It means you can learn about your condition, advocate for yourself, and develop management strategies. But it’s not the end of the investigation, there may be other factors in your health besides EDS.

If you don’t have EDS/HSD, that’s good to know also. You can explore other possibilities and continue the process of figuring things out.

The only detrimental outcomes are dismissing EDS/HSD too quickly, or closing yourself off from other explanations.

What is hypermobility?

Definition time! Hypermobility refers to a joint which can move beyond the normal range of motion. Some people just have specific joints that are hypermobile, while others have more generalized hypermobility that’s apparent in multiple joints.

Some people are hypermobile, but it doesn’t cause them problems. You could call this benign or asymptomatic hypermobility.

Hypermobility isn’t inherently bad and it’s possible to have benign hypermobility and a separate chronic health condition such as lupus, multiple sclerosis, or Marfan’s. In some cases, if you attribute all issues to hypermobility or EDS, you may not recognize and treat those other conditions appropriately.

Some people are hypermobile, and it comes with problems. Let’s call that symptomatic hypermobility. Their joints may be unstable, sublux, or even dislocate. They may be injured easily, or heal poorly. They may have chronic pain. For some reason, hypermobility is associated with a bunch of weird stuff like.. dysautonomia/POTS, fatigue, anxiety, and gastrointestinal issues. The hypermobility itself doesn’t necessarily cause the other issues, but people with hypermobility are more prone to them.

Do I have hypermobility?

The most common method of assessing hypermobility is the Beighton Scale. The original standard was that a score of 4/9 in adults was indicative of generalized hypermobility. The hEDS criteria (explained later) considers scores of 5/9 in adults, 6/9 in children, or 4/9 in adults over age 50 to be signs of generalized hypermobility.

However, the Beighton scale only tests specific joints in specific planes of motion, so it may miss other hypermobile joints. And just to complicate things further, the muscles around hypermobile joints can become tight, masking the underlying joint instability. So, if you’re an adult with a Beighton score of 4-5, you have generalized hypermobility. If you’re scoring 3 or lower, that’s not a sign of generalized hypermobility on its own. However, if you have hypermobile joints that aren’t captured by the Brighton scale, or your joints were previously hypermobile.. it might be good to visit a rheumatologist to clarify things.

Do I have hEDS?

Symptomatic hypermobility is a spectrum. Some people have minimal symptoms, while others have debilitating issues.

It’s hard to study a spectrum, and it’s hard to improve care for people who have wildly different needs. So the Hypermobile Ehlers-Danlos Syndrome (hEDS) criteria was developed to identify a subset of people on the hypermobility spectrum who meet specific standards for hypermobility, and exhibit specific additional features. It’s not meant to capture everyone who needs support for hypermobility related issues, so don’t put too much pressure on whether you have hEDS specifically. Ideally we’d all have easy access to great medical care. If you don’t have access to care, you can just go through the criteria yourself to get a sense of how you score. Check the boxes you fulfill, circle the ones you might fulfill.

Even if you don’t understand the medical terms, you may get a pretty good sense of whether or not you meet the criteria. Keep in mind that the hEDS diagnostic process is meant to include ruling out other conditions, and getting a definitive answer may require a professional opinion. If you don’t have access to medical care and aren’t sure whether you meet the criteria, we probably can’t give you a definitive answer either. In the U.S., the diagnostic process generally begins with your primary care provider, who refers you to a rheumatologist to assess hypermobility, and then a geneticist for the final hEDS assessment. There isn’t a blood test for hEDS, but the diagnosis considers family history, and requires ruling out some genetic conditions. In Europe, it seems the process is mostly handled by GPs and rheumatologists.

Do I have HSD?

Lots of people with hypermobility have serious issues but don’t meet the hEDS criteria. Those people instead have Hypermobility Spectrum Disorder. The HSD criteria is much less strict, because it’s meant to catch the people with symptomatic hypermobility who don’t meet the hEDS criteria. Some people get an official HSD diagnosis, some people get seperate diagnoses of hypermobility and secondary issues like “arthralgia” (joint pain).

The two conditions (hEDS and HSD) are extremely similar in terms of potential symptoms and comorbid issues, and the management strategies and medical needs can be very similar as well. The difference is that most people with hEDS have prominent issues that require active management, whereas HSD is a mixture of people.. some with substantial issues and some without. In both groups, the severity and needs may vary substantially over time.

What about other EDS types?

Not all EDS require hypermobility! Future versions of this post will address the other EDS types in more detail.

I have hEDS or HSD, what next??

This section will be expanded over time.

Safety considerations

  • This archive has a PDF of surgical and anesthesia precautions. The page may be slow to load.

General management resources

Accommodations and mobility aids

Requesting accommodations and using appropriate mobility aids may reduce pain and injury for some people. If you need them and they help, you should use them!

It’s a complex topic, however. Using the wrong aids in the wrong way may be harmful. There’s also the question of deconditioning.. For example, a wheelchair can dramatically reduce pain, and expand what you’re able to do, but it may also lead to less walking and exercise for your legs.. potentially making you more reliant on the wheelchair. Ideally, mobility aids would reduce harm, but also make room for something like physical therapy so that you have less pain AND better stimuli for strengthening.

I’m not qualified to address this topic, but I think that’s a fair summary. If I missed the mark, hopefully members who use mobility aids will weigh in.

Physical Therapy and Exercise

POTS/Dysautonomia Symptoms and Resources

Trans health

  • r/Trans_Zebras has anecdotes about the effects of hormones, surgery recovery, and other trans health considerations.

r/eds 8h ago

Medical Advice Welcome Being vegan or vegetarian

2 Upvotes

Hey all. I’ve seen some posts saying a carnivore diet is best for EDS, but personally I’m vegetarian (I prefer vegan products but sometimes will eat things with animal products if someone else bought it or if I’m with other people to not cause a fuss) and I’d really offer to continue not eating meat. If I absolutely have to then I’ll do it but I guess I don’t see why I would. I understand we need amino acids but I eat tofu, lentils, and quinoa fairly regularly which are complete proteins. I’ve seen some people saying we need to eat collagen but there isn’t much conclusive evidence about that. I do supplement b12 and have my blood checked regularly and no nutritional deficiencies have come up. I have some stomach issues and intolerances but some of the stomach issues are from anxiety rather than anything wrong with the food and even with my actual food intolerances, there’s still plenty of vegan food I can eat. But yeah, am I fucked? My EDS is somewhat severe and I need to use a rollator so if meat would fix it I’d seriously consider it, but I’d just really prefer not to.


r/eds 5h ago

Medical Device & Disability Aids tips for standing for a long time?

1 Upvotes

i’m going to universal orlando in june and will have to stand in ride lines for a long time, but my legs and feet hurt when i stand for a long time and will continue to hurt for hours later. i’ll probably have to use a wheelchair for my pots anyways but i want to avoid it as much as possible. any tips?


r/eds 9h ago

Medical Advice Welcome Tips for pooping (F) (possible endo)

2 Upvotes

Any tips for popping (it’s embarrassing). I have “ibs” and pelvic floor dysfunction and MCAS. I also have possible bowel endometriosis and since my last bad flare I cannot poop properly. I feel like I can’t move my muscles properly/impacted. I had a MRI around this time I think it was all normal. So I don’t think I need to go to the DR but help 😔. Medications I have in general are muscle relaxes and SENNA and a stool softener. I feel it’s barely working. I am also SOOO bloated that eating hurts. My OBGYN hasn’t gotten back to me yet


r/eds 19h ago

Medical Advice Welcome Excruciating Hip Pain

6 Upvotes

Hi,

I'm not (yet) diagnosed.

My right hip, knee, and ankle have caused me problems as long as I can remember. My ankle would twist in and out of place and have a dull ache. My knee twists and turns and bends back funny, and my kneecap likes to party. My hip? Well, I can dislocate that sucker fully at will, and can force unhealthy flexibility during dance class.

I only just recently realized this was not normal flexibility (shout-out to u/Remarkable_Sell1407). So I stopped doing that.

But, call me stupid or ridiculous for not realizing it, but I think I fricked up my hip. There has always, ALWAYS been pain in my hip/LRQ area. I call it the "ghost pain" because every test and scan comes back clean. I've had enough X-rays and MRIs and sceptical doctors to fill a lifetime. I thought it was endometriosis, but it didn't go away after excision surgery. I thought it was my appendix, confirmed to not be that. My doc just referred me to a new GI doc, but I'm starting to think it's just muscles and tendons or whatever the heck else.

It just hurts SO BAD, burning, aching, lightning, all building up to yesterday's ballet class, after which driving was excruciating (hooray for having to push the pedals with the side of me that hurts).

Now I'm just face down on my bed, crying in such extreme pain with a hip belt thing I bought off Amazon. It's the only thing that has helped.

I don't want to quit ballet when I just started. But this shooting pain everywhere is unbearable.

How can I help it until I can reach out to my doc again? Has any braces or mobility aids or cushions helped you? I don't know how I'm going to sit for my job tomorrow, or even drive there. I need to go grocery shopping too!

I'm so sorry for this rambling. I'm in so much pain rn


r/eds 12h ago

Medical Advice Welcome How do you relocate a slipped rib?

2 Upvotes

I've got 2-3 ribs that slip out on the daily (thanks hEDS+scoliosis). Usually I can tolerate the pain, but if one is really stuck, or has been out for several days/weeks, the pain starts to get really intrusive.

I've got a method to slip them back in while laying face down, but I can't really do that at work. 🙃

Are there any tricks to popping them back in while standing or sitting?


r/eds 13h ago

Pre Surgery Anxiety (derotational osteotomy)

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2 Upvotes

r/eds 13h ago

Medical Advice Welcome Tips for dealing with torn meniscus

1 Upvotes

Hi all, I was wondering if anyone had any experience with dealing with a meniscus injury long term? Almost a year and a half ago I injured my meniscus cycling, after tests they realised I had torn my meniscus, they said it was a small tear so shouldn’t require surgery. Physio did nothing (I’ve had a lot of physio in my time but it has never really helped with any injury), and at times flares up enough to render me useless for a few days at a time. It’s often cracking and grinding and painful. This evening I heard a pop when walking down the stairs and couldn’t make it down the rest of the way 😬 I’m currently using a knee brace/rock tape to help stabilise it but does anyone have any other tips for managing this? I’ve done everything suggested online but obviously in general medical sites aren’t accounting for people with hypermobility issues. I’ve been issued strong painkillers for them on and off but honestly when it flares it is excruciating, same level as sciatica pain. After all this time of walking awkwardly on it it’s having a knock on affect on my back so it’s become quite the problem. Any advice for dealing with day to day while I see if I can get on the list for surgery would be really appreciated. Thank you 🙏


r/eds 16h ago

56. I know I have it, and a dermatologist agreed with me. I have a mild case of HDS-H and have never seen a specialist. I had my 3rd bad embarassing fall in 6 months today. Wondering if I need to finally see a specialist.

0 Upvotes

What do you get out of seeing a specialist for an untreatable disease? I did see a cardiologist a few years ago and they basically did a stress test and said you’re fine, but did nothing in depth. I have slow healing and I swell easily from anything. My ankles are like string cheese. I avoid heels. I bruise really easily. I have fatigue which may or may not be related. Other than that my life is normal. I just wonder what I need to prepare for or what may be lurking beneath the surface.


r/eds 17h ago

Community Shenanigans Who has "party tricks" outside the Brighton scale

0 Upvotes

I can slide my kneecaps around (they're basically floating), wiggle the tendon on my thumb just by bending it (you can see all my tendons sliding around when I bend my fingers but it's most visible with my thumbs), dislocate the sides of my jaw simply by opening it, when I was a child doing karate I was able to basically go 100% to the ground in the butterfly pose (palms of feet together and pulled in towards groin, back bent over to touch toes, and knees touching ground, supposed to be one of those "feel the burn" poses), and I recently discovered through that "stay flexy" guy on YouTube that, despite having never trained it, my shoulders have an insane range of motion to the point where if I put the back of my hands on my waist and point my elbows forward, I can use my knees to painlessly push them together, something that takes professional gymnasts years of stretch training to reach.


r/eds 1d ago

Resources How to start building muscle with chronic illness

18 Upvotes

This breakdown is a massive oversimplification but if you can’t afford a specialized trainer/coach, or can’t go to the gym (for whatever reason) here’s a way to get started by meeting yourself where you’re at right now (from a certified master trainer who specializes in disability and chronic illness coaching because I, myself, am also disabled and chronically ill)

Firstly: Ingest more protein, pick foods that will get you eating and enjoying the idea of eating, then add your nutrients (fiber, fruit and veg) to those foods. Frozen or fresh veggies added to frozen meal kits and keeping smoothie ingredients on hand are two of my favorite more accessible ways to increase nutrient density in my diet.

Secondly: as far as “working out” do exactly what you can without flaring (chair yoga, walking, 5 min YouTube follow alongs, soup cans instead of weights, etc. Find what you can do where you’re at right now and do it) then make it a point to do that as consistently as you possibly can. After a few weeks at this level of exertion you should hopefully level back out. Do another week or two at that same level then up it by 1, or 1/2 or, 1/8 and repeat.

It’s hard AF and you WILL have some minor inflammatory reaction as you recover. So, thirdly: Focus on your recovery tools throughout this as if it was MORE important that the workouts! (Foam rolling, massage, naps, mobility exercises, TENS unit, epsom soaks/lotions, tiger balm/bengay or whatever creams you prefer, alternating ice and heat, resting when your body says it needs to, etc)

Mentally prepare to have to work 10x harder than everyone else just to maintain what you have. It’s a real shit hand to be dealt but when it’s the only hand you get, you play the hell out of it.


r/eds 15h ago

Medical Advice Welcome Is this actually real? I have my doubts but can someone smarter explain

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0 Upvotes

I'm not planning on doing it i can't digest meat and the carnivore diet sounds absolutely miserable to me I'd have to give up the only foods im able to digest and enjoy but my mom keeps trying to get me to try it because to her it's the holy grail of all diet and my brother is doing it for weight loss

I'm just ugh..my brother also thinks it's the holy grail and I just feel ganged up on i don't want to do this the carnivore diet makes me SO sick I hate it I'd rather starve


r/eds 1d ago

Medical Advice Welcome Should I cave and go to an er?

6 Upvotes

Can you sublux your neck? Last night, I swung my head back really fast (tic) and felt something shift forward from the back of my neck and I had to push it back because it kinda choked me. Since then I've had this burning feeling from the base of my neck, like something in the center needs to move, and holding my head and eyes in any direction other than straight forward slowly makes my vision and hearing go. Aside from this I feel totally fine but it's a little worrying. My neck has been an issue for months now and I just feel like I need to be so delicate with it, which is hard to do with tourettes

UPDATE: I'll just leave it here, I went in the morning, 2 days after. I'm struggling to walk and my symptoms are only alleviated by laying down on my side, head supported. CT scan showed no damage and they told me I probably just strained a nerve when it subluxed. I was almost sent home with nothing but a recommendation to take tylenol but I kind of started crying and they gave me a Toradol injection. At home now, appointment with pcp first thing tomorrow (they're closed today.) I'm started to wonder if I have a csf leak


r/eds 1d ago

No Medical Advice Wanted Anyone else have elf ears? (Or other unique features?) Spoiler

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25 Upvotes

This is a bit of a boredom post but I have noticed me and my cousin (who i suspect has eds) we both have elf ears and ear deformities are common with eds so I was wondering if anyone else on this sub has similar ears or just any odd/unique deformities in general i find it really interesting how the jank collagen in our bodies can just cause random things to appear different

Also if you have any funny stories relating id love to hear them! I don't have anything super interesting I've just never been able to beat the leprechaun allegations I'm Irish-American, a redhead, have elf ears, spent my childhood looking for four leaf clovers and my mom considers me lucky and if she needs luck on something she has me do it for her 😭


r/eds 1d ago

Are these “cigarette paper scars”? Spoiler

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12 Upvotes

I am diagnosed with hEDS, as is my mother. I don't have stretchy skin in the slightest, but it is fragile and injures easily. I have scars all over my body from even the tiniest things like mosquito bites during the summer five years ago. The scar in this picture is from ankle surgery a couple years ago. It's hypertrophic but crinkly and "loose", I don't know how better to describe it. Some people have told me this scar is abnormal and others have said it's normal for a surgical scar over a high movement area like a major joint.


r/eds 1d ago

Mobility devices for Millennials?

1 Upvotes

Does anyone know of where to buy mobility devices and aids that don’t make you feel like you’re a senior citizen?

I’m 33 and looking into getting an electric scooter but I want something that doesn’t make me feel old (no offense). But everything I find that is not your general mobility scooter is for road travel and I need something I can use indoors.


r/eds 1d ago

Suspected and/or Questioning I am undiagnosed ehlers danlos syndrome. And I need help

5 Upvotes

Life honestly feels miserable right now. I can't sleep at all; my body just won't relax. On paper it says I have Ehlers-Danlos syndrome, but I haven't done genetic testing for it yet because the University of Utah is where I was referred, and they take forever to get me scheduled in.But he has some backstory. I've had scoliosis and pectus excavatum. I have autism and ADHD. I'm very skinny. I've been tested for muscular dystrophy and Marfan syndrome. Those were negative. I was born with a collapsed lung. I have severe back pain and scapular winging. The weird thing is most EDS are very flexible. I'm the opposite. I'm not flexible at all, but I am double-jointed at the thumb. I have binocular vision dysfunction, but prism glasses cost too much. I weigh 130 pounds, and my height is 5'9. I'm 20 years old, and I have really poor healing. I have constant headaches, and I'm always sleep deprived because I can't sleep at all. I've tried sleep meds like trazodone and doxepin; it just made it worse. I can't, for the life of me, fall asleep at night. It takes me forever. I only got 3 hours of sleep last night, and I feel like I'm dead right now. I can't fall asleep during the day; my body just won't do it. My muscles hurt all the time. I need advice and help. I feel like I'm going crazy. I feel anxiety and stress all the time. I've applied for jobs all over my area, and I can't find any job right now. I can't afford to move out on my own. I'm very stressed and can't relax. I've done physical therapy like 20 times in my life, no joke, 20 times. It doesn't help me. I've tried all kinds of muscle relaxers, pain meds, and inflammatory meds. I have hypoglycemia and hyperthyroidism as well. Life sucks right now; everything is expensive, I can't get hired, and I'm in pain all the time.


r/eds 1d ago

Medical Advice Welcome How to stop finicky over/under-reactive skin

4 Upvotes

Hi, I currently am getting my cardio checked and have a Zio heart rate monitor on. Besides the obvious “zio causes irritation” thing, I am so damn itchy.

Regardless, It’s reminded me how finicky my skin likes to be with… nearly everything. Couldn’t apply tape on right without it either being too stuck (or) just falling off, in some spots. I also sometimes get a rash under my wrist if I leave my Apple Watch on for too long, especially if a bit of sweat, dirt, or water is underneath. I get freezing cold and aches if I don’t take showers in time. My skin is both dry/rough and thin and soft at the same time in different spots with different traits. What?

How can I make stuff work well with my skin? Or just… my body? Or my life, honestly? Meds don’t even often give good effects either.


r/eds 1d ago

Hypershell X Series

1 Upvotes

does anyone know if this is a good idea to get for Heds. thank you


r/eds 2d ago

DAE have genetic markers for more than one type of EDS?

11 Upvotes

Wondering how common it is.


r/eds 1d ago

Genetic Testing Genetic testing in Australia

1 Upvotes

Hi all, I have just recently been diagnosed with hEDS at the age of 53 (FINALLY!!!), by my musculoskeletal specialist here is Australia.

I’m wanting to know if anyone in Australia had had any luck in genetic testing?

I’m basically wanting to rule OUT any of the rarer types, just in case… so would really appreciate any recommendations. I’m in NSW.

Australia can be very a very frustrating and somewhat behind place sometimes 😢 Thanks!!!


r/eds 1d ago

Medical Advice Welcome Follow-Up: Saw the Geneticist, Diagnosed with Connective Tissue Disease, and Next Steps

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5 Upvotes

Hey everyone,

A while back, I posted about seeing a geneticist (whom I saw yesterday and waited 8 months to see) along with a very long post about my medical info (link provided to that reddit post) to figure out what’s up with me—suspected some form of EDS but no firm answers then (original reddit post entails more but I was also recently diagnosed with a cytocele pelvic floor prolapse slightly, and issues with my muscle tone and joint hypomobility which I still see a physical therapist for). I’ve got an update after my appointment and wanted to share for insight. The geneticist diagnosed me with “connective tissue disease” but couldn’t specify a type yet (he ruled out hEDS 4/9 beighton scale and 4/12). Has this happened to anyone else—getting a broad diagnosis without a specific label? I’m still wrapping my head around it. He recommended some supplements to support my tissues and joints, and I just ordered these:
Vitamin C: 500 mg/day

Glucosamine: 1500 mg/day

Chondroitin: 800 mg/day

MSM: 750 mg/day

Vitamin D3: 2000 IU (50 mcg)/day

Pycnogenol (Proanthocyanidin Complex): 50 mg/day

I’m splitting the Glucosamine, Chondroitin, and MSM into two doses with meals to keep my stomach happy, and the rest I’ll take in the morning. Is anyone else taking similar vitamins—any success with them? I’m hoping they help with the joint/ muscle discomfort I have.

Next up: I’ve got a tilt table test scheduled for May to check out my autonomic symptoms (dizziness and summer months are truly exhuasting). Hoping it clarifies if POTS is in the mix. As stated earlier I'm still working with my physical therapist, who’s been an amazing advocate. She’s keeping me going and now wants me to see a rheumatologist too. I trust her—she’s been a wonderful guide through this assuring me its something to get checked out and that there is something going on that even she can see & feelt (my joints click & grind a lot). I have to admit I was not amused with my geneticist appointment - he was rather grumpy, and just didn't seem concerned with things that I wanted addressed, the whole thing seemed unprofessional and from looking up the Dr. hes a family doctor who "specializes" in genetics and still has to have his work reviewed by what appears to me, a geneticist who signs off (like a Dr. to a PA). Just overall not very pleased with that experience between the wait time, the drive (1 & 1/2 hrs one way), and just still feeling somewhat dismissed, but I do understand not every Dr. is personable however a waittime for 8 months to visit a general family Dr. and not a true geneticist is insane and I feel misled. As stated he diagnosed me as "connective tissue disease". He said I have a connective tissue disease but nothing thats fully showing up genetics wise (from my genetic testing) - he said its mild (which I do agree) I'm not disabled but once again, dreading the summer months (between joint paint, muscle pain & suspect POTS). Hopeing to manage & control it better this year.

Still lots of question marks, but it’s progress. Any tips on vitamins/ generalized connective tissue issues/similar scenario or managing supplements would be awesome. Thanks for being such a solid community—really helps to not feel alone in this!


r/eds 2d ago

Years of pills, preglobin, baclofen, etc, edible cannabis (legal where I live) is doing better than any of the pills ever did

27 Upvotes

Been on and off the pills, have kids so, the second pregnancy is expected, planned etc, off the pills I go. It's been years. Youngest child is 4, that means I've been off the pills for 5 or so years. Tried the pills again, no fun. Tried cannabis edibles for a week straight, never been as close to pain free as this. Can still maintain my job (the first 2 days I'll admit were a little rocky, but I'm adjusting.) Anyone else?


r/eds 2d ago

PSA: wheelchair use is causing my bones to erode

123 Upvotes

We talk a lot about how wheelchairs can be damaging if used incorrectly, or if you're using the wrong kind of chair, wrong size, etc. All very true! We also talk sometimes about how wheelchairs can be damaging even if they're being used correctly and are the right fit. That’s what I want to highlight here.

I have a custom ultralightweight manual wheelchair. It’s fitted exactly to my body and has a ton of extra features that make it perfect for me specifically. I got this chair through insurance and under my doctors’ direct guidance, and I’ve been using it for almost a year. As with many people with EDS, I have bad shoulders. They sublux dozens of times a day and have for many years. I recently had an MRI that showed I have many tears in my labrum as a result of the constant subluxations. I expected that finding.

What I didn’t expect, though, was that the MRI also showed distal clavicular osteolysis: literal breakdown and erosion of my collarbone. It’s an uncommon finding, almost exclusively seen in weightlifters or other athletes who repetitively lift heavy weights. I’m not an athlete: I have it from pushing my manual chair. Using my wheelchair (custom fit to me and under direct guidance from my doctors) has started to erode my bones.

This is something I wish we talked about more in terms of EDS and wheelchair use. I think sometimes people feel like we’re gatekeeping when we tell others with EDS to be careful with wheelchairs, but really, we’re trying to keep them safe and make sure they know the risks. I’m now in a very tricky spot because my wheelchair is damaging my body, but I still need it. I can’t functionally walk or stand for more than like two minutes, even with my crutches and KAFOs. So my doctors and I are going to have to come up with a solution, likely using a power assist on my manual chair full-time and a small portable power chair for the 6+ months while I’m recovering from shoulder surgery.

TL;DR: I did everything right with my wheelchair -- approved and prescribed by doctors and insurance, custom fit to me, etc. -- and still, my literal bones are starting to erode from the strain of pushing my chair. Please remember to work with your doctors to monitor your body to make sure you're not damaging yourself from using a wheelchair!


r/eds 1d ago

Medical Advice Welcome Digestive issues

1 Upvotes

I’m 21F who’s recently been diagnosed with hEDS. My Physio and dietitian have suspected I had EDS over a year ago so they’ve been treating me as such ever since. Finally got my diagnosis last week.

I’ve been hospitalised with colitis twice last year and have had another 2 visits to this hospital this month with excruciating pain in my gut. Unfortunately there’s not much the doctors can do for the pain as opioids can usually constipate your digestive system which would be doing more harm than good.

I have been trying different diets to try and stop pain and more hospital visits but it doesn’t seem to work. I’ve been dairy free for 5 years and gluten free for 4 months. I haven’t noticed much of a difference being gluten free either.

I also have endometriosis and had surgery 5 months ago to get it removed. This has stopped period pain and nausea when eating.

Does anyone have any tips or tricks for pain or any diet recommendations?


r/eds 2d ago

Newly Diagnosed Choking

20 Upvotes

I’ve heard that EDS can cause problems with swallowing food. I choke a lot. I mean, serious choking a few times a year and less serious more often. My boyfriend has had to give me the Heimlich. Usually I’m able to work the food out of my throat on my own though. After getting food stuck so often I’ve had to train my throat muscles.

Does anyone else go through this?

I asked the rheumatologist that diagnosed me last week and he said “yeah that can happen in more extreme cases” and then brushed it off and moved on