r/ehlersdanlos

I have a knot under my shoulder blade that my massage therapist, who i see 1-2x a month, told me I probably need to go to my PCP about it. I’ve already done PT and still do my exercises when I’m at the gym. She literally called my knot public enemy number one and now i’m wondering if anyone else has the same thing

I’m seeing PT specifically for my unstable dominant shoulder, dislocations have torn the rotator cuff I guess. This woman does the most rushed Beighton Score on me without even giving me a heads up, like genuinely just bending everything backwards and around etc. A few min later she asks me a question about my pain and cuts me off in the middle of my sentence and says “yeah I’m actually not sure you even have EDS, but you’re definitely hypermobile”….like girl how else would you be able to tell if you’re admitting I’m hypermobile and there’s so many other things that go into an EDS diagnosis that you’d have no way of knowing??? My heart seriously dropped and I was admittedly standoffish the rest of the appointment. She said something about it again briefly later in the appointment and I did say something like “well there’s years of medical history that you’re not seeing, so.” Just so freaking infuriating and doesn’t make me want to trust her with my care at all. They’re one of the only offices covered by my insurance in my area so I’m going to stick it out as long as I can, but god it pissed me off.

I may be about to accidentally start expensive shopping habits for myself, but I'm curious: what health tracking devices are you all using? I have hEDS, dysautonomia/POTS, and MCAS, and currently use an Apple Watch, which I like, but I'm fascinated by all the different ways people track symptoms, pacing, heart rate, sleep, HRV, activity levels, crashes, etc.

Tell me about your watches, rings, chest straps, ECG monitors, symptom-tracking apps, spreadsheets, colour-coded notebooks, or whatever other system you've developed in your quest to collect data on your weird little meat vehicle lol. What's been genuinely helpful, and what's just been interesting data?

Hey guys! I’m a 23F and I have many many stretch marks since my teen years (in my shoulders, knees, belly, thighs, arms, back…). It’s bad to the point that any doctor who just met me thinks I was obese (never weighted more than like 120pounds/56kg).

It’s simply horrible and I hate them. I tried laser, which was a total fail (probably thanks to the EDS). Acid worked a little, but it took 2y for a not so great improvement. Tattoo is not an option (I saw some pretty horrible afters).

Does anyone has any tips on how to remove them and what has worked? I’m literally do not care about the price or suffering, as long as it works

Edit: people, thanks for the answers and advices! Overall, thanks for the support messages, but I would like to clarify that my bother with the stretch marks is not about social pressure, but about how it sucks to have hundreds os scars across my body. Wanting to make them less noticeable doesn’t mean I hate myself, and about the suffering - most cosmetic procedures have some kind of bother, which I don’t mind at all. So, thanks for the ones sharing advices.

📢 Excited to share some research news!

Last year, I shared my doctoral research study with this community, and many of you generously volunteered to participate. I wanted to come back to say thank you and share an update.

I'm a doctoral candidate in Nutrition at Texas Woman's University, and I'm honored to share that the first phase of my dissertation has been accepted for presentation as a poster at the Dysautonomia International Annual Conference in Houston this week.

Poster Title:
Gastrointestinal Symptom Burden and Functional Impact in Primary Autonomic Disorders

This study examined how gastrointestinal (GI) symptoms affect daily functioning and quality of life in people with primary autonomic disorders. Many participants also reported living with Ehlers-Danlos syndrome, highlighting the close overlap between these conditions.

I've also submitted a manuscript based on this study to the peer-reviewed journal Clinical Autonomic Research. In addition, we recently completed data collection for Phase 2, which is investigating metabolic, nutritional, and body composition alterations in people with primary autonomic disorders.

This research truly would not have been possible without the support of communities like this one. Thank you to everyone who participated and shared your experiences.

After the conference, I'll return to share a plain-language summary of the findings and answer any questions about the study. Thank you again for helping advance research in this area.

​

Hi everyone, over the past few months I've gone to my PCP over complaints with joint pain, breathing problems, POTS symptoms, etc. After doing a large amount of autoimmune blood tests and everything coming back normal/negative, I was referred to a rheumatologist. After going over my medical history and mentioning both my mother and sister have hEDS, the rheumatologist performed the beighton score on me, giving me a 0/9 despite proving atleast a score of 4/9.

She explained to me that despite the high probability of my issues being related to connective tissue, because i am unable to bend my fingers i am not hypermobile nor have any form of connective tissue disorder. Ultimately the appointment ended with her telling me she doesn't know what is wrong with me and diagnosed me with Fibromyalgia.

Since this appointment I've experienced my first shoulder subluxation followed by a toe subluxation that happened yesterday.

This situation has left me frustrated and the diagnosis feels like a skid mark on my medical record. I am wondering if anyone else has had a similar experience with doctors and/or what they did to overcome the ignorance. Any general advice or comments are also appreciated!

Hey everyone, I love to write but my fingers bend too much and i end up hurting my hand when i write too much. I also have swollen joints/fingers most of the time and i’ve noticed when i have tasks involving my hands having to be active they will get “stuck” and more swollen. Been using thicker pens but it doesn’t feel like enough. Does anyone have a fave pen for writing or tools for their bendy fingers? thank you!

hi everyone, my left shoulder is a lot more hypermobile than my left. i'm always dealing with shoulder pain from having it out of place. i don'r dislocate but i do sublux. i'm working on the known culprits - correcting my posture when i'm sewing, not reaching extra far for stuff (telescopic shoulders anyone) and i got a neck pillow for sleeping so i don't pop my shoulder out to *be* a pillow.

the sleeping one is really the kicker. it doesn't usually cause an injury outright but it makes any shoulder pain i have last longer because it's not in the right position to heal. the neck pillow works until i'm unconscious and don't have control over my movement. generally it happens a lot less now but it still happens from time to time.

the other thing is that i'm finally able to exercise again (yay!!!!) and i've started swimming. it's doing a lot of good for me but my left shoulder doesn't love a more intense swim. i try and make sure my swimming technique avoids my hypermobile range of motion as much as i can, but I think my left shoulder is literally just looser than the other one.​

i know athletes use KT tape. i did try that years ago for a completely unrelated use and my thin skin and sensitivity to adhesives made it very painful. but then again i was using that on a very thin area/am medicated for MCAS now. do any of you find it helpful? i've got tactics for supporting pretty much all my other joints but it doesn't seem like there's such a thing as a shoulder brace. what do you guys do?

im trying to do some weight lifting and i swear im only feeling it on my joints and not the muscles. i am using machines, i have studied form, i still just feel the strain on my knees or hips, yk? any advice?

First Time posting in here, Im needing some help trying to find an Ergonomic computer mouse for Computer use as my joint problems and Arthritic like symptoms are acting up in my Right hand, the hand i use for my mouse. but i can never tell what one is good, and wanna get advice from people with the same problems as me, Just as a bunch of other hEDS people i know my hands are massive and if a mouse i use isnt massive my hand folds inhalf over it aggravating hand cramps and such. Anyone who could share what mice they use? itll be used for gaming and normal computer browsing. sorry if this is poorly typed, my hand is killing me.

before anyone mentions it I had a Logitech mx master 3. but it was still too small for my hands, gripping it gave it cramps.

i've been overthinking using my cane. i started using it again after avoiding it for months. i can usually just about tolerate my pain and push through it, but i've kind of gotten sick of the back and forth of flares caused by my own negligence. so i'm using the cane most of the time i expect to be on my feet for more than 30 minutes, which is almost every day right now.

i definitely benefit from it, i can walk so much more without my hip subluxing, knee aching, or arch feeling like it's collapsing. and as a bonus people usually offer me a seat on the train.

when i do use it, i don't feel like i need it as much. but when i don't use it, i wish i had it like 75% of the time. i know that's pretty much the point of it and that means it works well for me, but it feels fucking stupid.

i hate the stares. i'm still clumsy with it. i feel like i'm being dramatic when i use it, and i'm still afraid to bump into people i know because i don't like admitting that i'm disabled and i don't like being pitied.

No matter what product I use or how much water I drink my lips are always dry. Any similar experiences or suggestions?

Recently got diagnosed with both heds and mcas (which I guess is a win? We know what is causing all of my many issues now which is nice I guess...) but in researching these diagnoses I am realizing that I may be in more pain than I realize. I have moments of "clear" pain- like I know something hurts and it's abnormal, etc. But what my mom and other family members have thought, is that I have been in pain basically my whole life and just not realized it because it's my normal. Is that something that can happen? To be fair there are also things where I don't or didn't realize something was abnormal or what something was. For example I didn't realize I was dizzy a lot until my mom and my sister explained to be what dizzy was and what it could feel like.

I've recognized that I've had knee, ankle, wrist pain and I had a bad time with my back a few weeks ago and I KNEW that something was abnormal and wrong. But I guess that's my big question, could I be in far more pain than I think I am? Could I be in pain and just not realize it?

So I think it’s finally time, I’m starting to have a hard time getting around bc of some chronic back and hip pain. I’ve never used mobility aids and am a bit intimidated by all the different kinds of canes there are out there so I wanted to hop on here and see if anyone has any recommendations. If any of yall have specific canes that work well for you or that you really like I’d really really appreciate any suggestions, even drop some links if you’ve got them.

I’m also really nervous about getting my first mobility aid so if anyone also has any advice on that front that would also be really awesome. As of now I’m just planning to use a cane to help me get around at home, I’m definitely not ready to use one in public yet. My pain is also typically worse right when I get up in the morning and at the end of the day so I don’t foresee needing it at work/at stores or anything, at least not yet, but if anybody has any tips on getting more comfortable/confident using mobility aids in public that would be really helpful for if/when I get to that point.

So I like to cook in the kitchen quite a bit. Both my hubby and I were former short order cooks and since getting diagnosed with ulcerative colitis and POTS in addition to my EDS my hubby has had to take over most of the cooking lately. He is now having to get a job as a trucker due to him losing his job. Since he won't be around as much, I'm needing some sort of aid to be able to sit and cook, otherwise I pass out. Does anybody have any recommendations?

So my EDS is not as severe as most and I’m lucky. I know that. But this weekend, my partner and most of our friends went and did the Tough Mudder 5K. I didn’t sign up for be because they decided to do it with too little notice for me to train to a point I wouldn’t feel like my body would break doing it.

I’m so proud of him for doing it and I know it was really tough but it’s just made me realise how this is a disability even if it doesn’t always feel like it counts as one. Everyone else got to do this and did it together and I’m just left holding bags and taking photos.

I want to be able to do stuff and share this with them but I just don’t know how long it would be before I was physically in a position to be able to.

Title says it all, but please do read if you have time as this is a big life altering decision for me and I don’t have anybody to help me make it but you guys:

I’ve been fostering all different types of cats for a year without any problem, but ideally, I was going to ultimately adopt a smaller adult cat that way it would be easy for me to carry them and transport them w my eds. About six weeks ago I showed up at the shelter to get my new Foster and they gave me these two brother kittens who are the sweetest things I’ve ever met – they are bonded to me and to each other. I found out yesterday that they want me to decide about keeping them by Sunday.

My main issue is a lifting restriction of about 10 -13 pounds because of my neck, shoulder back and ankle issues. I have mild CCI, chronic migraines, a herniated disc in my back and two in my neck, facet joint Arthritis, a janky immune system and I have an ankle that probably needs an ankle reconstruction at some point. Other than that, you can say I’m healthy… Lol. I do also have a sleep disorder, but the cats don’t really affect that if anything they help with that because they help wake me up and they help my anxiety.

I am walking around and fully mobile, I live alone in a one bedroom apartment and I work full-time remote from home and I don’t have an issue with scooping their litter or anything like that right now. I’m also able to afford someone that comes in deep cleans once every three months so it doesn’t get too bad with pet hair because of the fact that I currently am working full-time. But my 70 y/o parents (who are very ableist, negative, overly practical to the point of depriving themselves of joy, and happen to also be my only caregiver/ support system and are very involved in my life at 29 because of my EDS) are telling me that I’m going to regret getting two cats.

I know there’s probably some truth in that statement and it will come with its challenges so I’m trying to be practical about the decision, but I also don’t want this to be yet another thing that I let my disability stop me from doing – it’s not the same as having kids, which I’ve already decided I will not be able to do m. I believe i am able to care for the cats and give them a good life. I can’t pass my disease down to my cats. I always wanted one cat which is why I started fostering …but two does feel like a big 20 year long commitment and I guess I’m just freaking out a bit.… but I absolutely love these cats and they have brought so much enrichment and happiness to my daily life – I’ve been fostering for a year, but I’ve connected with these two so much and I find it less stressful to have two than one because they keep each other company. At the same time I obviously know that medical bills are always going to be a huge issue for me, my family has been very financially strained in the last few years… which I think is what my parents are partially stressed about because I will also having to pay for the cost of two cats and of course two vet veterinary bills could be problematic in the future.

My main concern is not even the cost or Cleaning – my main concern is transporting them with Eds – traveling is hard enough, but how will I get them either to a boarder or to the vet if they end up being big without causing a pain flare? Like if I have to lift 2 15 pound cats into a carrier and then lift the carrier into the car… They could be anywhere from 10 to 15 pounds. They’re about 4 to 5 pounds right now, but I have no idea how big they will get. So if any cat owners on here have any advice on that end, please let me know because I think if I could figure that piece out, I’d feel a lot better about it. It would be nice if my parents would just offer to help when I do have to travel or take them to the vet since they’re already so involved in my life and live 10 minutes away, but they don’t want the extra work. And they are also older so I don’t want to depend on them. Unfortunately, I do not have a partner, and I don’t know when that will change. I also don’t have any siblings which again is why my parents are my only support system. So, I would be depending on either my parents or strangers or friends to help me care for them or help me get them to the vet if I wasn’t able to figure out a way to do it myself. I’ve considered a pet stroller, but I just don’t know what the reality will be like once they get big and I know that this group is the only group that would understand why this is such a big deal.

TLDR; I love these cats, if I did not have EDS, I would want to keep them, I am 70-90% sure I can keep them and figure it out, but my controlling parents and my own self-doubt is making me question whether it is a bad idea to adopt two cats as a single person with EDS.

Does anyone else struggle with their skin? Especially in early 20s? I feel like I’m going through a second puberty (technically we all do, but hear me out.) my pores are so large, my skin is sensitive yet oily yet dry? Blackheads, dark circles, sebaceous filaments, does anyone have any suggestions to how you combat this? We may have stretchy skin that doesn’t appear to age, but those pores and skin sensitivity does not lie😂😅