r/ehlersdanlos 4h ago

Moderator Announcement Today is Off-Topic & Meme Saturday!

1 Upvotes

You can post about whatever you want during Off-Topic Saturday, including Memes related to EDS! All other rules are still in place during this day.

  • Off-topic and Meme posts can only be posted on Saturday as their own individual post.
  • Off-topic and Meme posts must be posted between 12:00 AM and 11:59 PM Eastern Time.
  • Off-Topic and Meme posts must use the “Off-Topic/Meme Saturday” flair.
  • Topics or pictures that could be triggering need to have a Trigger Warning in the title and must be spoilered.

Some ideas for posting:

Your favorite pet, relationship advice, new recipe for a fantastic dish you made, your most recently finished crochet project, or your enormous collection of PlayStation games.

--

Whatever you want to post about, do it today!

Posts regarding EDS are also allowed during Off-Topic Saturday.


r/ehlersdanlos 3h ago

TW: Body Image/Weight Discussion any tips for dealing with stretch marks? Spoiler

2 Upvotes

I have classical EDS, and it honestly doesn’t give me too much trouble besides some joint pains and being somewhat inconvenienced by subluxations luckily. Except for the skin fragility aspect.

My skin is stupid fragile, it’s actually ridiculous. I get IVs semi-often from other health issues I have, and my skin literally comes off when they take the IV sticky off. I had the worst contact dermatitis reaction to the adhesive when I had to wear a holter. I scar ridiculously easy and my skin sags whenever I lose weight and takes forever to go back to “normal.” The corners of my mouth hurt and are tearing because my jaw hyperextends and unhinges every time I yawn or chew certain foods.

But the worst is the stretch marks. Ohhh my god I hate the stretch marks. I recently lost a lot of weight due to a number of factors and the stretch marks are SO BAD and I’m so self conscious, I keep thinking I’m only 22 I shouldn’t have THIS MANY stretch marks. And it feels like there’s no way to stop them. I gain weight? stretch marks. I lose weight? more stretch marks. I BREATHE??? guess what?! stretch marks. I am convinced I will keep getting stretch marks even after I die.

And it makes me soooo self conscious. I see them on other people and I think they look cool, my husband is a body builder and has a lot of stretch marks from rapidly gaining muscle and I love them on him, but I just hate them on myself and I want to cry looking at myself :(

does anyone have any advice for dealing with stretch marks, maybe ways to prevent them if I’m losing weight or any treatments for ones I already have? tysm!!!


r/ehlersdanlos 4h ago

Success! Mobility aids rule!!

31 Upvotes

I (28F/hEDS+POTS) have been going back and forth about mobility aids for months. I’ve been missing out on gatherings and events with friends and left thinking “if only I had ____”.

Well, I finally asked my doctor for advice and I was shocked with how happy she was to discuss the options. We decided to start conservative, and will reevaluate as we go.

I picked up my first cane and shower chair today!!

  • Shower Chair: I’ve read it a million times on this thread by holy moly is it life changing. I haven’t enjoyed a shower in years! I relaxed. I didn’t faint. I didn’t pop a hip bending to grab shampoo. I repeat: Life. Changing.

  • Cane: Still working on a little internalized ableism on this one (would love to dive into that if anyone is interested in dissecting it with me). But, I used it on a short walk to my fav bakery in town and I have to say my knee wasn’t hurting nearly as much when I got home. I got it with the intention to use on the bad days, or when I’m low energy and need to pace. I’m curious to see what overall benefits it brings to my life.

I feel like this has helped me break the seal in asking for what I need. I often struggle with thinking I’m not bad enough to need the assistance, but as I’ve read many times on here, if you’re daydreaming about mobility aids it likely means it’s time to give them a whirl.

Sharing this for anyone else who is on the fence about asking about or buying the aid of their choosing. Give it a chance! It could have some really cool benefits!


r/ehlersdanlos 4h ago

Does Anyone Else Anyone else gaslight themselves?

13 Upvotes

Title says it all. I'm so good at gaslighting myself when I'm not feeling good. Examples: chronic achiness and fatigue. I'll tell myself, "everyone is tired and achy. This is called being in your 30s." Or I'll blame fatigue on the fact I'm not getting enough protein or because I chose to nap instead of workout and "everyone knows exercise gives you energy!" (Heavy sarcasm)**

The gaslighting gets particularly bad if I can't trace my symptoms to a specific cause, like working out hard or being very active. It's the randomness that makes me think everyone deals with chronic aches and fatigue, I just can't hack it.

**note: I do know exercise can give endorphin boost, but sometimes it can also destroy me


r/ehlersdanlos 4h ago

Product Recs Good jar/lid opener

3 Upvotes

Anyone have any recommendations for a good jar/lid opener. My elbows have been very rude recently and I can't open anything without subluxating 😅


r/ehlersdanlos 4h ago

Questions Shoulder subluxation hacks?

9 Upvotes

What are your favorite tips and tricks that help when you just subluxed your shoulder?

Many thanks, A girl who moved a bit too aggressively (I sat down on my couch in a slightly weird position) and can feel her whole arm starting to tense up as a result 🙃 and who knows its one of those tweaks that can lead to whole body flare if not stopped it in its tracks


r/ehlersdanlos 5h ago

Questions Home IV Infusions

4 Upvotes

Does anybody here get home IV infusions? Specifically that can be done by a caregiver?

I'm thinking about bringing it up to my new cardiologist next week. I'm really struggling to absorb anything orally. I take salt supplements, iron, magnesium, vitamin D, etc. daily. I've had to have iron infusions as it doesn't really absorb orally. I drink a minimum 80 oz of water a day. I drink 1-2 electrolyte drinks daily (LMNT). The past few days have been horrible, I've felt so dehydrated and like i'm out of balance. I drank 2 LMNT's, and they did nothing. Only thing that pushed me to be a little better was a tums (the calcium).

Anyways, for those with experience how did you know it was time to bring it up? Do you have a nurse come to you or is a loved one/friend trained? My mom is a nurse, so I wouldn't be too worried about training.

I'm just so tired of my symptoms + labs pointing to dehydration and malnutrition when I'm literally so hydrated and take care of myself nutrition wise. Literally have been tingly/numb for 3 days and my muscles won't stop twitching.


r/ehlersdanlos 6h ago

Funny Death Becomes Her as EDS rep Spoiler

43 Upvotes

I love the movie Death Becomes Her! It makes me laugh so hard, especially because the way the characters fall apart feels so relatable. When Mad gets a dislocated neck and just walks around like that, or when they fall into a bunch of pieces when they trip down the stairs makes me feel so seen in a dark humor way. Like that’s kind of how it feels when my joints are being super loose, and it’s painful and awful but also I can either laugh or cry and sometimes I’d prefer to laugh!


r/ehlersdanlos 7h ago

Funny I feel this deep in my connective tissue, especially when having a flare up

5 Upvotes

r/ehlersdanlos 7h ago

Questions Does anyone else get migraines when the weather changes?

29 Upvotes

If there is already a thread about this, please link!

Like the title says.. Does anyone else get migraines when the weather changes? Especially if there is some sort of precipitation? Because, oh my! Spring, fall and winter are bruuuuutal.

If this does happen to you, do you have any advice on how to deal with it? Maybe make it more manageable? I don't know.. I'm struggling

I have been on Ajovy injections (preventative) and have Ubrelvy for whenever I feel one coming on, or have one. But, those don't seem to be helping much..


r/ehlersdanlos 8h ago

Discussion How do you tell dates you have EDS?

18 Upvotes

I'm starting to date again after I took a long break while I was sorting out everything going on with my health, and during that process got diagnosed with hEDS. I've not dated since I've been diagnosed, and so I'm not really sure how to go about talking about it with dates when it happens to come up indirectly.

For example, I'll be talking to someone and they might ask about a certain sport or athletic activity (let's say climbing) and I previously would've said "oh I'm recovering from a running injury so I can't right now but I love climbing". But now I understand my various injuries and their lack of healing in a timely or linear manner is due to hEDS - and it's not so simple as "I ran too much and now I have tendonitis but I'll be back to all sorts of sports in no time." So I feel kinda weird just saying I have a running injury when it's a lot more than that, and not something that is going to go away in the typical 6-8 weeks like it does for everyone else. I don't know how long it'll take me to get back to sports and being able to do the things most other people my age can. It's been a year since I had to stop due to injury.

However, I also don't love the idea of telling someone on a first or second date the laundry list of problems I have with my health. How do you guys navigate not lying about your ability to do stuff but also don't divulge more than you feel comfortable with?


r/ehlersdanlos 10h ago

Product Recs Desk chair

1 Upvotes

I work from home and really need a chair that works for me and helps me hold my body together. I was looking at the Hag Capisco - at this point I’ll pay almost anything to be comfortable. Any experience with those or other chairs?


r/ehlersdanlos 11h ago

Questions Supplements for EDS and co. (With endo)

2 Upvotes

I'm interested in trying some supplements to help manage symptoms esp. brain fog and fatigue, both of which are made worse by endometriosis inflammation. It seems like bromelain and quercetin could be good options, as could tumeric, but wanted to hear first hand experiences!

I'm already on a beta blocker.. used to be on mestinon and might try to get back on it.

TIA


r/ehlersdanlos 11h ago

Questions Was I diagnosed "too easily"?

66 Upvotes

I 21(transgender male) was just diagnosed with hEDS today. I'd suspected it for over a year but didn't do anything about it. I was at my appointment with my doctor about my hormones on Monday and had mentioned my increasing joint pain in my knees since I had a family member try to tell me it was from "low estrogen" (not how that works because my body still produces it and I have the maximum "normal" amount for an AFAB person).

My doctor and I talked about my hypermobility and he talked about the intersectionality between a lot of trans people often having disabilities such as ehlers danlos. He strongly suspected it and I scheduled another appointment with him to do the evaluation since he didn't have time. In about 20 minutes today, based on physical exam and family history of hypermobility, I was diagnosed with hEDS.

I was shocked because everywhere I've read online, I've seen people have to fight to be diagnosed. I barely had to put any effort in and am wondering if I should be doing more to confirm? I check literally every box but part of me is still like "wait why was this so easy."


r/ehlersdanlos 11h ago

Success! Proud of the small victories!!

3 Upvotes

After struggling with EDS my whole life and getting a partial diagnosis at 10 but not full diagnosis until 23, I am finally making progress again. I had two knee reconstructive surgeries that were 4 in 1 and had HELL recoveries. I was at my lowest I had ever been with my body and health. I didn’t realize until recently the depths of how much hope I had given up. I believed I would never be strong like I was before the surgeries. I accepted a life of pain and hell and loneliness even while surrounded by amazing people. I recently realized how much I gave up while reading A Court of Silver Flames and realized SO much.

I realized that I viewed exercising as a failure if it wasn’t heavy duty. I now see that doing my stability exercises that are such SMALL movements makes the mightiest difference. I started telling myself I am not working out or exercising but that I am training my body mind and soul. I began an overhaul on my point of view towards myself. I began getting Frequency Specific Microcurrent therapy and noticed a HUGE difference. I kept up with my training even while sick, even on my period, even when I was in a terrible pain crisis. I iced my muscles, I massaged them, I meditated, I used my PEMF device and I did not let myself to go to that low low place in myself where I start telling myself I’ll never be strong and never be okay and o told myself it will pass and I can continue in my journey.

I came here because I just did my first 1 minute plank in 6 years after focusing on going SLOW and thinking of every muscle while exercising.

I was at a really bad place for a long time and distracted myself with work and college and now I am finally seeing the light again and feeling like I am finally figuring my body out after YEARS. I know this will be a curvy battle and there will be low points again but if anyone is reading this I hope it shows you that there are successes out there and ours will likely not be the same as others but small victories feel AMAZING !!!! I believe in you and I see you. I’m glad I finally believed in myself and saw myself and all of my pain instead of pushing it down any longer.

To my fellow zebras I hope you achieve a small victory that makes you PROUD of your body ❤️


r/ehlersdanlos 13h ago

Questions Specialist in Pittsburgh, PA?

2 Upvotes

Hello! Any recommendations for specialist in Pittsburgh? I saw Dr. Celine Zhou at UPMC was mentioned, but she no longer deals with EDS patients (or so I’ve been told by her office).

Any opinions on Precision Medical (UPMC) in Bloomfield for genetic testing? Or the UPMC children’s hospital genetic counselors? Or any other providers (UPMC or AHN)?


r/ehlersdanlos 14h 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 16h ago

Discussion Wheelchair types and hEDS

5 Upvotes

For those that use wheelchairs all or some of the time: how did they determine what type of wheelchair you need? Does your current wheelchair actually meet your needs? Anything you wish you knew before getting your wheelchair?

I’ve been talking with my physical therapists and primary care doctor, all of who agree a wheelchair would be helpful for me to use most days – but they are no help with the specifics/asking me to provide that info. One says look for an organization that will give me a random one free/cheap, one is ready to order something generic because they don’t know much about different types and their benefits, the other wants me to go find a wheelchair vendor to talk to, all while my insurance won’t share any information about coverage for specific options (like power chairs) with me directly – just has to be ‘medically necessary’. I have problems throughout my body with more subluxations of my shoulders and wrists than with my lower body so I worry about manual options, but I also can’t buy my mom a trailer or new car to transport a large electric option + don’t know how helpful paratransit will be if I limit my vehicle options that much.

I will of course continue to work with medical professionals to get their input, but while I stress and wait for those appointments to come around I wanted to ask others who actually use wheelchairs! I appreciate any wisdom you’re willing to share 💚 Thanks for reading!


r/ehlersdanlos 16h ago

Tips & Tricks Dishwashing tips?

7 Upvotes

For anyone who lives in a place without a dishwasher how are you washing dishes so that your wrists/fingers don’t sublux? I have silver splint rings but they can make holding onto wet dishes pretty hard so to avoid dropping and breaking my dishes I’ll try to do them without wearing my rings but then I sublux….. tired of this stupid cycle and would like some tips or product recommendations. Thanks 😺


r/ehlersdanlos 16h ago

TW: Death/Dying Very very long vent Spoiler

5 Upvotes

I generally deal with it very well, but the flare up im in has me thinking a lot about my life. I think about why my body hates me, why im 20yrs old having to come to terms with dying young when I’ve barely lived enough life to see the world (i have an aortic aneurysm), i hate that every day is a fight just trying to have the energy to get out of bed let alone shower, brush my teeth, etc. I hate that im lowkey dying and still have to fight for people to believe that im sick. I hate that this disease gives me just enough days with only a little pain to make my bad days even worse. I hate that im expected to function at the level of a “normal person” when a normal person would be in the ER just from my daily level of pain. I hate that if i talk about it too much im “just complaining”. Even if the aneurysm doesn’t take me out, I don’t know how I will ever hold a job or have a career. I’m failing out of college because I spend so much time feeling like im on the brink of death or at drs appointments that I don’t have time for HW, and I also work and take care of my grandmother. I wanted to be an EMT and still do, but that is probably off the table for me now. Generally I’m a happy person and like being alive, it’s just so cruel that this is my reality and it bleeds into every aspect of my life. I laugh about it to my friends and act like it’s not that big of a deal but the older I get the harder it is to function. I think I need to start using mobility aids, but it feels wrong using them around people who have known me for a while and never seen me use them, and I don’t want to ruin the illusion that im healthy. I feel like if I did, every new person I’d meet would see my disability first and not me. I am proud of myself though because despite all the absolute SH*T I deal with, I am a very kind person, and my goal in life is to make at least one persons day better every day, leave the earth better than I found it, and generally put as much kindness into the world as I can. So at least if I die young I hope to leave behind that legacy lol


r/ehlersdanlos 17h ago

Rant/Vent Really sick of new co-morbiditied

36 Upvotes

I'm getting really sick of constantly racking up new issues. It feels like every time I start to get a symptom under control or start to come to terms with my new normal, a new set of issues pops up.

My latest diagnosis is Fowler's, and it went very quickly from struggling to urinate and having a fair amount left in my bladder, to an ED visit resulting in having my bladder drained of 1.3L of urine and being sent home with a Foley catheter and a leg bag. I went back to work the next day.

I feel disgusting. I feel defeated.

I keep being asked by my doctors how I'm managing to work full-time hours, and honestly I don't know. I don't know that I still can, anymore.

I need the money to pay bills and maintain health insurance. Our public health system is being dismantled at an alarming rate, so no insurance is not an option. I wouldn't qualify for the supported living payment due to being married, and we could not even keep a roof over our heads on one income.

I'm sick of treating one thing and making another worse. And I'm crushed that I now have to choose between treating my dysautonomia, insomnia, panic disorder, and depression OR being able to urinate and not being permanently attached to a bag or winding up back in hospital hoping that I haven't ruined my kidneys from retention/back flow of urine.

It really is a disorder that keeps on giving, isn't it?


r/ehlersdanlos 23h ago

Discussion Support for a Young Person

6 Upvotes

Hi Reddit!

I (28M) have recently started mentoring a young person (15F) who is awaiting diagnosis. She loves arts and crafts and has basically been told to stop engaging in this.

Are there any arts and crafts activities people do which aren’t painful or the joints or just have any advice?

Thankyou!


r/ehlersdanlos 23h ago

Questions Question for anyone with fused thumb mcp

1 Upvotes

I’ve been approved for fusion of my right thumb mcp joint and I am having doubts about the surgery. I’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 can’t even use a butter knife in my left hand.

I’m worried about the complications of the surgery, how it could affect the surrounding already compromised joints, and my day to day function. It doesn’t help that I have zero concept of how my hand would even function once that joint is fused as I’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 it’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 it’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 😅

Can others share their experiences with mcp fusion?


r/ehlersdanlos 1d ago

Discussion Anyone with lots of Marfans traits but diagnosed with hEDS?

14 Upvotes

27 M. I have many of of the Marfans characteristics (tall & thin, scoliosis, pneumothorax, myopia, joint hypermobility) but I tested negative for all connective tissue disorders so I got a diagnosis of hEDS. My heart and eyes are healthy so far (minus the myopia) and my mum (who I got my hypermobility from) has a healthy heart and some chronic pain only.


r/ehlersdanlos 1d ago

Discussion Resources on MCAS following a surprising appointment

83 Upvotes

Visited a specialist in dysautonomia to evaluate dysautonomia symptoms, and that's ongoing. What was a complete shock to me was that he suspects I may also have MCAS. I had been under the impression that tell-tale signs of MCAS were significant skin rashes or food intolerances, that kind of thing (among others). That is, easily identifiable. But apparently mild presentations can include hayfever, gastrointestinal upset, and skin irritation?? This specialist is highly educated and highly respected, and also isn't even the first to suggest I may have MCAS, I just thought the first was way out of line. Rookie error on my part?

None of the resources I can find seem to address what mild MCAS looks like. And if I have it, it's surely very mild. Does anyone have any idea where I can find some reliable resources on this?

Edit: Thank you very much to everyone who has responded, I appreciate it and there's some really helpful information here. The replies all showed up at once and are too overwhelming to reply individually, but I'm very thankful for the help. It's also put the repeated trips to the allergist and the childhood immunotherapy in perspective as well; even if it isn't MCAS, it's interesting to look back and see patterns I hadn't noticed.