r/hypermobileEDS

I have talked to my PT about this and my mother and them insisted that braces will just make me weaker and that I should not get any or use any when I'm in pain. They say that I need to strengthen my joints n stuff instead of using braces to take away the pain. Is this true? I don't know who to trust anymore since I've been through so many crappy doctors ( and my mom acts like she knows everything but she doesn't ) Thanks <3

For the past few years now (I’m 24) I’ve been in the obesity category, had a few doctors try to dis my literal diagnosis of HEDS because I’m not deathly skinny like my family with it. I do need to lose weight since it’s bad on my joints but nothing really does anything, I can’t exercise without serious hurting myself for at least months, besides walking. I already get around 10k steps a day, I’ve dieted, calorie counted, starved myself, currently I’m on tirzepitide because I’m desperate for any sort of relief from my weight on my joints. It sucks so bad, my stomach is always hurting, my joints hurt and my muscles hurt way more than before, but it’s the only way I’m able to actually get the weight off. Does any one have any weight loss advice or advice about how to make these side effects of my weight loss meds worse, I’m also diagnosed with MCAS too.

Hi all! I’m 23F, 5’3, 120lbs, and for the last few years, I haven’t been able to lift my legs up while laying down. They just feel super super heavy and I can just barely get them up but when I do they shake and I feel exhausted after. It doesn’t hurt to walk but it does hurt and I get exhausted going up stairs. I’ve been to a neurologist and they’ve done an mri of my brain and one of my spine and haven’t found anything, I currently don’t have insurance so I haven’t been back but they did recommend for me to see a neuro muscular doctor. I’m not a smoker/ don’t take any meds/ drugs. I was just wondering if any of yall could know what could be up with me?

Hi Everyone! I’m not a mobility aid user, but I’m curious about everyone’s experience/stories, from whoever is willing to share. Like, Why did you start considering them, how did you approach the topic with a doctor, etc. Anything y’all are willing to share is appreciated, thank you!

Hey guys! How does PT actually help people with hEDS? I’m trying to deduce if I would benefit from it. Thank you!

So I have POTS/dysautonomia, fibromyalgia, migraines, hypermobility, possible CCI, and other issues. Neuro strongly suspect hEDS. Anyway, I recently started physical therapy, but I have such a hard time motivating myself to get out of bed to actually do the at home exercises.

I want so badly to get better because my body feels so knotted up all over, especially my neck and back, but when I remember I have to workout my executive dysfunction really kicks in and so does time blindness due to being neurodivergent. I don’t know if my body is too tired or if my brain is too tired, but I just can’t find the energy to actually be disciplined and do my workouts. Does anyone else have trouble with this?

It’s not so much so the pain, it’s just the task itself. Same thing with cleaning litter boxes, showering, brushing my teeth, etc. Those things always get done EVENTUALLY, but never “on time.” If I have a doctors appointment on the other hand, I actually get out of bed, get ready, and go to it and am always on time or early.

Ever since I graduated college in May, it feels like I’m in this endless loop of WANTING to be productive but not motivated to do anything at all. I’m on a ton of different meds that have overall improved my function and I am on stimulants for my neurocognitive issues but it seems like the stimulants just don’t work anymore, even after my doctor increased my dosage. I want caffeine but then my Raynaud’s gets worse, so I try to avoid it but caffeine is really the only thing that makes me wired enough to do anything but it doesn’t last long.

There’s so many things I want to do. I want to study for the GRE, I want to track my symptoms, I want to start a food diary for my GI issues, I want to workout, etc. There are so many things I WANT TO DO, but absolutely zero motivation to do them. Lately, I’ve just been in bed all day watching YouTube videos about various chronic illnesses because I love learning I just want to learn so much.

I wish I could do a million things at once, sometimes I wish I had a clone, but when it comes to anything that doesn’t involve laying in bed, I just procrastinate until the day is entirely gone.

If you’ve had this issue, how did you fix it? Please I need advice. Not even accountability by my physical therapist helps. She can literally see whether I login to do the exercises and it’s embarrassing to give her excuses. She doesn’t judge me, but I know it’s probably a little disappointing to her and it’s very disappointing to me. I feel very guilty overall about everything that I do not get done in general. :/

TLDR: I need tips for motivation to get out of bed to actually do my PT exercises because lately I just stay in bed all day with the exception of eating and feeding my cats, but I do want to get physically better.

I have been on the struggle bus for a while now, but this past month and a half has been brutal. I wanted to see if you guys have any advice or just some support because I feel like I’m going insane. A little backstory on my situation so you can have the full picture. I apologize for the length. 😓

So I’m a 40/f who was flexible as a child (gymnastics, cheerleading, had party tricks, etc) and I’ve had pain and symptoms almost my whole life. My first memory of a migraine was when I was small enough to fit in the top of a shopping cart. I was told in elementary school that I had mild scoliosis. I started going to a chiropractor at 15 because of the trap/shoulder tightness and low back pain was bad enough that my parents thought it should be checked out. Found out my L5 is fused to my sacrum, apparently I was born that way, so I’ve been used to having low back/sacrum area pain. I get random extreme sensitivity spots on my skin (allodynia) where even blowing air on it or my clothes touching feels excruciating.

I was dx’d with Hashimotos at 20 and then migraines, at 30 I started to have some positional vertigo episodes. I was living a pretty normal, capable life up until the vertigo issue started. I’ve had my ears tested, PT, therapy, specialists, etc and my ears are fine, they think I have vestibular migraines so they gave me that dx and called it a day. In my research, vestibular migraines aren’t positional so I kept digging and found cervicogenic dizziness due to upper cervical issues. Found a chiropractic in 2021 that did the Blair technique, got assessed, turned out I do have issues with my C1 atlas slipping out of place and the curvature of my neck. Worked with him for a year and half helped fix the curve, my posture and a lot of my symptoms improved.

Then I got covid in 2023 and experienced some of the worst skin, joint and bone pain I’ve ever felt. It was like it literally attacked my weaknesses and all the progress I’d made not only stopped, but reversed. And I’ve been trying to get back to a good place since.

My neck is now (still 3yrs later) unstable, and I can’t tolerate the Blair anymore, it’s too aggressive. I have to see someone with an Atlas Orthogonal machine to put it back in. I’m in PT almost weekly because I now have 5 bulging discs in my neck, my hips, shoulders, ribs and neck subluxate, especially near my cycle. Sleep is difficult because it causes so much stiffness and discomfort with my head and neck and I think slips my atlas the most.

The past month and half I was in one of the worst pain flares I’ve had. I decided to gently foam roll my back before going to the gym, gently stretched and then did a light upper body workout - slipped out a rib, then muscle guarding, then lower cervical and upper thoracic spine locked up, everything got inflamed, whole coathanger area became a giant Allodynia spot and resting where I put pressure on any of it became so painful and stiff that it felt like my bones were broken. I JUST got out of that flare a week ago, then I had a vestibular migraine day, followed by a day and a half of cervicogenic dizziness. The past 3 days I’ve started having this weird tightening/constricting in my lower chest/upper abdomen area like at the base of my ribs but in between them. It will tighten up and it’s not painful, but it makes me feel claustrophobic in my own body and I can’t get away from the tightness so it’s causing my body to panic and then my right scapular wing area spasms. This morning I woke up with pain and stiffness again at that CT junction area and I’m just so tired. I’m getting beaten down by symptoms on the daily, it’s like symptom roulette and I’m just struggling. It’s like as soon as I can function and do something, then something else comes along and prevents me and it’s just exhausting. My doctors are zero help, I’ve heard for a decade now that I’m “too young to have all this pain and symptoms” but not one has helped me to try figure it out. Several people have brought up hEDS to me recently (my PT especially) so I just wanted to see if this sounds like the familiar to you guys or if you have any advice at all. I’m mentally, physically and emotionally burnt out and just could use some guidance. Thanks for taking the time to read this if you are seeing this. 🫶🏼

So I’ve been trying to get diagnosed, and I finally had my appointment with my PCP—and she just DISMISSED EVERYTHING I SAID! I brought the diagnostic criteria from the ehlers-danlos society, and she didn’t even look at it, she wouldn’t even unfold the paper. She asked me to do a few “hypermobility tests” that are NOT on the Bieghton scale, and then when I was hypermobile that way she just MOVED ON while I was trying to TELL HER MY SYMPTOMS. I’m pissed. She sent me to get X-rays for my joint pain +inflammatory marker labs—which came back mostly normal of course, and now she won’t help me do anything else. They’re sending me to a physical therapist, who I can hopefully get to actually listen to me.

What am I supposed to do??? Should I try to find a specialist? I don’t know if my insurance will cover it, or if I can even get my good for nothing PCP to refer me. I feel like they’re playing gaslighting-hot-potato with me and I HATE IT. Only person who took me seriously was the nurse who took my vitals and did my intake questions. I asked for a referral to the rheumatologist for a second opinion and she said she “consulted with them” and that there wasn’t any to support sending me there—they keep trying to make it about the joint pain, when what I’ve stated multiple times that what I want is to look into ehlers danlos and try to get a diagnosis. I don’t know what else I can do. They won’t listen to me. I keep ending up with bruises from the labs and nothing else of even remote substance. I made a list of my symptoms, but all my PCP would do is talk over me and do that fucking smile they all do—you know the one.

How do I move forward? Is there something I can ask for a referral to?? Can the PT help me with getting a diagnosis??? I’m lost and I’m not happy with my ‘medical professionals’ right now.

I know the vibration plates have been asked about, because I have searched in the group before. Unfortunately I tried searching again, and no posts come up.

Maybe these plates are a scam, but something about it always looks like it would feel so good. Does anyone have success with them? I am so sick of lower back pain. Sone days it is worse than others, but most days it is a dull ache. Sleeping has become uncomfortable. I love sleeping with one leg up and bent and the other straight, but I feel like it’s catching up with me. I’m trying to stay away from that position now 🥹

Any advice or recommendations?

Thank you!!!

22F - I’m SHOOKETH today. I just left my dr appt with 2nd opinion rheumatologist and I DID leave with Hypermobilty Syndrome Diagnosis & an immediate referral to geneticist for hEDS testing to confirm. Woah. Kinda forgot that you are allowed to ask for a second opinion, it’s your right. My current rheumatologist who straight up denied to refer me to genetic testing & told me “no, you don’t meet the criteria” without even doing the B-scale test. I scored over 6 points before this new rheumatologist got past my hips.

I’ve had hEDS symptoms my whole life (two of my cousins also have it) and I’m beyond proud of myself for standing up for me, cause If I didn’t ask for a second opinion, I wouldn’t be where I’m at today.

I’m like still in shock writing this. I’m relieved right now because I have answers and resources to better help me understand my body, which will help me manage symptoms in the long run.

Hello friends,

For my entire life I have had a VERY hypermobile neck and it's always caused my trouble. I have never found a pillow that works and I just can't take waking up in pain (this specific pain that's easily preventable) anymore. It completely sabotages my entire day because it's that debilitating.

I did try the squishmallow hack and bought myself Louanne my opossum, but she's.... She's beat besties. She's so flat now. I've tried a few different styles of pillows over the years too. Memory foam, downy, as flat as you can get, as fluffy as you can get all of it and nothing seems to work. To include the ergonomic memory foam ones with the wings and everything on them.

I would love if y'all could drop your go to brands and styles for me to shop around on. My head is already twitching from the spasms and I am not like forward to being in this heat wave with this pain in my neck.

To answer what I can beforehand:

- I roll around ALL night

- Historically a stomach sleeper, but had to be forced into side sleeping. But I do still end up on my stomach, and now I'm seeing that it's not actually all that bad to sleep on your stomach? 🤔

- 5ft 4inches tall if your pillow rec needs to know height for ergonomic reasons

- My husband and I are willing to pay ANY price at this point for a pillow that's actually going to work for me, so gimme even the crazy expensive ones. I'm desperate.

- Live in the US and willing to shop international if I have to.

Thank you all so much in advance. I'm going to go cry into Louanne for a few hours before my dr appointment and hope I can function today 🥺💕

So after years of being in pain, I’m finally going to try one last time to go to the GP and get some sort of diagnosis. I’ve tried in the past and the most info I’ve gotten is “it’s hypermobility syndrome (which isn’t a thing anymore according to Google)”, “it’s just growing pains you’ll grow out of it”, and “unfortunately some people are just prone to joint pain, you’ll just have to learn to cope with it” (I was 13 when I was told this and in 10/10 pain regularly??).
But recently I’ve been having subluxations and the pain has been getting worse. I’d say I’m in some level of pain most days. I’ve never been too fussed about having a diagnosis, but 1) it’s getting worse, and 2) I’m about to enter my final year of uni and my tolerance for everything else when I’m in pain is very low. I can’t afford to take days off. If it starts affecting my grades I honestly don’t know what I’d do. I’m sick of having to cancel plans because I’m in pain.
I guess I’m looking for some advice. Is there anything I should bring up in that first appointment to actually get them to do something? Should I be asking to be referred to a specialist? (I’m in the UK btw so NHS level of care lol)

((THIS IS NOT A QUESTION OF DO I HAVE HEDS, I AM SEEING A DOCTOR THAT IS THE WHOLE POINT, I NEED ADVICE FOR THE ACTUAL APPOINTMENT — clarifying since this post was removed from another sub for this))

Hiya everyone,

I have an upcoming physiotherapy review with the main query being EDS (specifically hEDS) but I don't exactly know how to handle it.

Originally I stumbled upon the term and doing more research I found that a lot of symptoms lined up, so I made an appointment with my GP about hypermobility (even though it's quite mild) with a query about possible EDS and she found it sufficient enough to refer further.

I had one visit back in January with a pretty shitty doctor who brought it up even though it was completely unrelated and caught me off guard when he asked about it so I couldn't exactly describe my symptoms and he sort of brushed me off.

I am starting think it may be something else, I don't think my symptoms are very severe and I can't think of anyone I would've inherited it from, but since EDS is the main and original enquiry I thought this would be the best place to ask.

Does anyone have any advice on how to best describe symptoms and bring up my thought process/ that it may be something else?

For reference, I'm quite low on the Beighton scale (5/9 at 15), I usually get joint pain in my elbows, knees, hands, shoulders and back, and when I had pretty bad periods of shoulder pain I did find that k-tape helped, my joints are very crackly and I tend to get my knees or shoulders popping out slightly from time to time. I do get fatigue and digestive issues however I know that could be something else.

Thanks in advance for any advice<3

Does anybody have any tips for dealing with the heat, specifically with muscle fatigue?

For context, I was doing a lot of walking, and was just miserable, and moving my legs felt like I was moving through quick sand. I think the heat made it worse. I was diagnosed pretty recently, so I’m still figuring out how this has affected my body. Any tips would be appreciated! Thank you so much!

(Side note, I had my knees taped while walking, which helped with other aspects a bit :D)

Introduction
About a year ago I was formally diagnosed with hypermobile EDS, and it finally helped explain many of the things I’d experienced throughout my life.

I’d already made significant progress over the years. Earlier treatment for TMJ dramatically improved many of my chronic symptoms, but I still couldn’t explain why I continued to have periods of spinal, shoulder and hip pain, joint subluxations, poor recovery, fatigue and other symptoms that seemed unrelated.

Over the last two and a half years I’ve continued rebuilding my body through careful strength training. It hasn’t been a straight line. There have been plenty of setbacks, frustrating flares and times where I questioned whether I was actually making progress.

Looking back, the biggest lesson I learnt wasn’t how to train.

It was how to understand my body.
I stopped chasing individual symptoms and started looking for patterns.

That simple shift changed the questions I was asking. Instead of, “Why does my shoulder hurt?” I started asking, “What has my body been trying to tell me over the last few days?”
I’m still learning, but these are the ten lessons that have helped me the most.

1. Stop chasing symptoms. Start looking for patterns.
   Symptoms rarely happen in isolation. Instead of focusing on one problem, ask yourself, “What else has changed?”

2. Learn your baseline.
   You can’t recognise a bad day until you know what a good day feels like. Learn what “normal” looks like for your body.

3. Find your early warning signs.
   Pain isn’t always the first clue. For me it was often changes in sleep, energy, recovery or joint stability. Learn what comes first for you.

4. Think in trends, not days.
   One bad day doesn’t mean much. A pattern over several days often tells a much clearer story.

5. Keep a simple record.
   You don’t need complicated spreadsheets. A few notes about sleep, energy, exercise and symptoms can reveal patterns you would otherwise miss.

6. Every flare is feedback.
   Instead of asking, “Why me?” ask, “What can I learn from this one?”

7. Recovery is part of the pattern.
   Pay attention to what helps, what doesn’t, and how long it takes your body to recover. Recovery teaches you just as much as a flare.

8. Don’t compare your pattern with someone else’s.
   Hypermobility affects everyone differently. Learn from others, but build your own owner’s manual.

9. Use your patterns to make better decisions.
   Patterns can help guide conversations with your healthcare team and help you think about recovery, pacing, training and everyday life.

10. Stay curious.
    You don’t have to understand everything today. Every pattern you recognise is another piece of the puzzle, and over time those pieces start to make sense.

What patterns have you noticed in your own body?

I’m genuinely interested to hear what you’ve discovered, because I think we all learn from each other’s experiences.