r/ehlersdanlos

What did you have done? How did it heal? Considering an arm lift.

I got myself a hammock a while ago (finally after years of wanting one but not being able to out it in my space!!!) and holy heck, I never imagined I would be sleeping in it, but damn, it feels so good.

I normally have such extensive pain and fatigue, and it used to take me hours to fall asleep, and once I was I would wake up every hour, I would feel restless, and I would wake up exhausted.

Now I sleep only 4 hours a night, but my pain is sooooo much less (I don’t subluxate anymore during sleep!), I fall asleep quickly, I don’t wake up during the night, my heart rate actually goes below 50 during rest for the first time ever, and I actually wake up energised!

I am not saying this is a magic fix, but I do wonder if others have also felt these benefits?

I still have fatigue if I do a lot during the day so I still need my wheelchair, but the fact that I can comfortably stay up all day without even needing to take naps where I used to take 1-3 naps a day when I slept 8-12 hours really changes my whole day/week now.

I will have to do this longer to really feel long term effects, but after these few weeks I def don’t want to go back to sleeping in a bed for 8h a night anytime soon

So long story short my mom is wanting to help me make a cart for upstairs that has a lot of products to manage my hEDS, pots, and stuff for a feeding tube I'm getting in the near future, and I'm pulling a blank on things that would be helpful, I just was wondering what y'all use to manage your EDS? like I just can't think of what to put on said list...my room is down two flights of stairs so ideally it would just be things I would need in the short term that I can't go all the way downstairs to get if I need them, but I can't think and would appreciate some insight :)

I may need to get a below knee amputation soon and was wondering if anyone had experiences they could share? Specifically how it effected your other joints

I have been diagnosed hEDS for years but was recently recommended to get genetic testing. I've been debating whether to do it before or after the December (or March) release of new criteria/diagnostics. Has anyone made a decision like this and what was your reasoning?

Posted this on r/askdocs but posting here too 🥲

I have hEDS (taking Zoloft and yaz birth control) and have started developing allergies to things that I’ve never had an issue with before within the past 2 months. I am frustrated and perplexed why this is happening and why now.

First thing is showering which is what kicked this off. I use warm water, typically take about 20 minutes, and while I’m in the shower I start sneezing nonstop. I probably sneeze 15 times minimum and continue to sneeze and have a runny nose after the shower. I also start to develop a cough but the sneezing/runny nose is much more common. It usually lasts for a few hours or a day - depends on how severe it hits me. I thought it was my shower products at first but even if I don’t use any products and just rinse off, I develop these allergies. No one else in my household that uses this shower has this issue - just me.

The past two weeks, eating what I normally do (no dietary restrictions and not trying anything new), I now experience nausea and diarrhea. I either throw up or ride it out to eliminate the nausea or I spend a hot minute on the toilet and make at least 4 trips back before my body decides to stop. I’m starting to think I might be developing a food allergy now.

Last week I had to get a skin biopsy done on 3 different spots, and was given a bandaid to cover up the site to heal. The bandaid issued is one I am normally issued when I get any sort of shot/vaccine and when I get injured at home. I woke up with giant patches of bandaid-shaped red where the bandaid was and extreme itchiness. I even switched to a different bandaid brand in case that would resolve anything but it didn’t help.

I am so frustrated and have no clue what is going on!! I am tired.

Off to see Dr Mittal with my partner for assessment for HSD (it's definitely not hEDS on current criteria but they may have cEDS, awaiting genetic testing) on private insurance. I saw the hypermobility unit myself over a decade ago and saw Dr KazKaz. Our physio works with the unit.

I've heard from many many people now that she will diagnose and knows her stuff but can be tricky to work with. I'm totally fine with whatever, I can hold my own, but my partner definitely needs a slightly more gentle approach. Can people share their experiences and what this actually means?

And what we can expect from the initial appointment and follow up care?

I went to my rheumatologist Monday thinking I’d leave with the answers I needed but she completely dismissed me. Said I have no hyper mobility despite my PT telling me I have severe hyper mobility and knowing I do along with all my other symptoms. I left sobbing. My state (MN) seems to be a desert when it comes to finding someone to diagnose people or take me seriously.

I'm wondering if this is a HEDS thing or something else. If I push myself too hard in one day or dont get enough sleep, I will often start spotting like my period is starting. Sometimes it's barely any at all and sometimes it's kind of significant. It really freaks me out and no one I have spoken to has had this same experience.

I’m wondering if anyone who are in healthy relationships if you have tried, want, and or have had two separate bedrooms or spaces with your partner.
I have been living alone in my studio for over three years with my 2 cats.
My partner and I want to move in together. January.
I have never lived with a partner in a serious relationship and he’s lived with two partners in serious relationships. He made a comment the other day that it would be nice to have separate spaces and I got defensive and I said I don’t wanna be roommates cause…
I am jealous that someone already got to experience that with him and that’s probably childish, but then I’ve been thinking I’ve loved having my own space and being able to decorate how I want to decorate and sleeping alone because sleep is very important when we have EDS. He’s a big muscly guy who snores and runs hot he hates my bed because he just sinks into it. His bed is too firm for me. We have wildly different tastes in almost everything lol and now I’m contemplating if we should do a two bedroom 2 Bath place together…
but society tells us that then we’re just gonna be roommates and not in a relationship. I’m wondering what you guys think or have experienced in this thank you!! 🫂

I am 28 weeks pregnant with my second child. I gave birth to my first child at 33 weeks due to spontaneous rupture of my membrane (water breaking). They’ll never know for sure why, but my doctor suspects it’s related to my hEDS.

Has anyone else had this experience? Is there anything preventative you can do? I am on pelvic rest for the rest of my pregnancy, but I am so nervous it’s going to happen again. I was asleep when my water broke last time, so I’m not even sure how helpful pelvic rest will actually be. We were in the NICU for almost 6 weeks with our first, and it is not an experience I want to repeat (so much so that we almost didn’t try for a second).

I was diagnosed with hEDS a few months ago and sent for genetic testing by my rheum. I got the results back today and I was pretty confused by them. My rheum then messaged me about the results saying "Interestingly, a mutation was identified in a gene called "COL1A2". Mutations in this gene are known to be associated with EDS, however the SPECIFIC mutation you have has not been reported to cause or be associated with any disease. Therefore, there is nothing to do with these findings. If new literature comes out that suddenly finds this particular mutation is associated with any diseases, the company will issue an update to us."

Did anyone have a similar result from their genetic testing? It's left me feeling a bit unresolved.

edit: removed gene mutation so I don't accidentally dox myself, oops!​

As title you're No1 tip and it doesn't have to be a med item or idea its simply the best advice you would give yourself to manage EDS if you could roll clock back. It could be something you would do or something you wouldn't do, so long as its the number 1 thing you would tell yourself if you moved back in time!

Perhaps this list can help us with a different slant as I don't have golden meds etc. but we all have that golden advice.

Make a short so we can keep easily reading and sharing.

Thank you

Wow reading these comments has really been reinforcing for me!

In short my ankles hate me but the ankle wrap I have tried can't fit while wearing shoes. Anyome have cheap recommendations or tips? I habe shoes that support my ankle but they still ferl loose and not great.​

I saw my PCP and got a referral to a geneticist. She asked me why I wanted a diagnosis. I came up with whatever I could think of. If I need surgery again, it would be important. It will impact how I treat my wrist* and injuries going forward. It could impact my neice and nephew too, as i sort of suspect my niece may also have autism.

I understand it doesnt change how we treat my hypermobility, but there can be more to it. Yes, its a label. But why is wanting that bad? Why is it a problem?

To be fair, she didn't seem upset with my desire. She didn't come off negative or judgemental. She was fine saying I have HSD.

*I have a cyst from a sprain. My ortho said a steroid shot might be next, but it may rupture the ligament. I'd love to hear similar experencies!

For me it’s hands down the chronic fatigue and sleep disruption. The sleep apnea/UARS is brutal but even with a BiPAP I wake up multiple times a night and rarely get into the deeper sleep stages or REM. This can be both a cause and consequence of dysautonomia as well. I actually have had very few dislocations/hernias/etc, and the ones I have had occurred during the very brief times in my life where I was actually active enough to do anything to hurt myself… because for most of my adult life I’ve been too fucking tired to do anything. I do have chronic pain in my feet and back but I’d be perfectly happy to deal with the pain if I could just get some fucking sleep.

Title. I don’t want to wait years to get results on this nor break the bank. Thanks!!!

First post on here, pretty sure I used the right tag if not I'll fix it.

TLDR: I've been standing and walking with my knees locked for years and it's fucking up my knees back and hips (go figure) any advice or anything is appreciated!

For context I haven't been diagnosed with EDS or hEDS yet but am trying to, as the more I look the more I realize things I assumed were normal weren't. I've locked my knees when I stand for as long as I can remember and it's caused some problems for me (knees, back, hips.) I'm trying to be more aware of the positions my joints are in and when they're doing something there not supposed to which is 90% of the time, learning how to stand properly is already frustrating, the second i unlock my knees i feel so unstable and wobbly but i know it's something i need to fix. I know standing with your knees locked isn't too uncommon but dude I walk with my knees locked and have for years and I know that can't be good for my joints but I cant get over how wobbly I feel when my knees aren't locked what do i dooooo 😭😭

I’m going through a flare up rn, not a horrible one atm but I’m just so tired. I thought I’d have more time between my flare ups but I was wrong and have to babysit for 11 days and I’m just praying it doesn’t get worse from here. My knees are swollen, elbows swollen, jaw locking, back pain, and my usual srs. Even my toes hurt which is a rare thing for me. My flare up doesn’t even make sense because I just started a course of steroids that was supposed to help with my ligaments flaring up 🫩 if they are helping I don’t even wanna know how bad this would be without them.

I’m so tired. Every time I’m not in a flare up I convince myself my health isn’t that bad and that everything is okay. Then I flare up and remember I’ll have to deal with this for the rest of my life. It sucks. I hate talking about it to people in my life cause they can’t grasp it and just feel bad for me. I hate it. I don’t want the pity I just wanna talk about it. Life is hard right now from all aspects I was just happy I wasn’t flaring. All I can do is hope it passes instead of sending me into weeks of recovery.

I want to trade out my skin suit for a new one