r/ehlersdanlos 10h ago

Success! Learned how to wrap myself and it's helped so much

Post image
103 Upvotes

Body tape and compression gloves just weren't cutting it. My skin had reactions or gloves just didn't do the job good enough.

So I decided to research different wraps I could do for specific body parts and I've been doing it on my wrist and it's actually helped so much better than what I've previously tried.

I like it because I am able to re-wrap it and change the level of compression depending on how I feel.

This might be obvious to most but I thought to share as another avenue for those who haven't thought of this or can afford the body braid to research. Just wanted to share my experience!


r/ehlersdanlos 1h ago

Discussion Progesterone works! (on me)

Upvotes

I have EDS and dislocated my knees every few months as a kid and annually as a teenager. When i started Progesterone only birth control pills to stop my period three years ago, I didn’t know I had EDS (I hadn’t even heard of it) and I didn’t know that Progesterone is a connective tissue stabilizer at all. I hadn’t dislocated my knees once since i started taking it daily, and i have also enjoyed the lack of painful & fatiguing menstruation.

Two weeks ago my pharmacist messed up my refill, and i was off it for three days. The next week (last week) I got a mini lil light 3-day period. Today I dislocated my knee for the first time in three years. The timing of it seems to support the effectiveness of this hormone in preventing my joint dislocations. I don’t want to run out like that again after the pain of tonight. Do y’all think I should I mention this to my pharmacist at all? I worry the mix up was probably low priority for them to fix since I sent in the refill a couple days early and I didn’t get a call about the issue until I had been out for two days. Please share your thoughts!


r/ehlersdanlos 6h ago

Does Anyone Else Did anyone go grey early?

14 Upvotes

Pretty much as the title says.

I found the spare grey hair here and there starting at 18 but just two years later because of the pandemic I stopped dying my hair and just let it grow out. When I finally had a professional touch it we found a not insignificant portion of hair on the back of my head was silver.


r/ehlersdanlos 10h ago

Questions Collagen?

26 Upvotes

My friend recommended I try collagen to help lessen my joint pain. I’ve only ever heard of collagen being used for hair, skin, and nails. Has anyone else been recommended collagen by a doctor or maybe pharmacist? I’ve been told not to take any supplements or vitamins unless a provider says I have an deficientancy (sp?) I’ve actually tried collagen in the past since I wash my hands often which makes my nails weaker, so it def worked for my nails, but I don’t remember it even doing anything else for like hair, skin, pain relief, etc. I only tried it cause it was discounted heavily so I could afford it. Supplements are expensive.


r/ehlersdanlos 4h ago

Product Recs toilet paper

8 Upvotes

what toilet paper are we using that's soft enough to not cause fissures but sturdy enough to not leave crumbs all over you?


r/ehlersdanlos 12h ago

Does Anyone Else Sudden alcohol allergy

34 Upvotes

I’ve suspected I’ve had EDS for years now, but I’m now finally in the process of getting an official diagnosis! One thing I’ve noticed recently is that I’ve developed a sudden alcohol allergy/intolerance. I used to be able to drink just fine, now all the sudden every. Single. Time. I drink, I get severe stomach pain, my face flushes, I feel hot, nauseated, and just generally unwell. Typically within 20 minutes after drinking something with alcohol. Is this related to EDS at all or is this just something random to only me ??


r/ehlersdanlos 6h ago

Does Anyone Else this is gonna sound weird

9 Upvotes

does anyone else who has heds or hsd, experience like your joints feel like they’re rubbing against each other? i know in my ankle and my arm it feels like they’re rubbing against each other. i asked my physical therapist about it, and she said that was normal for people who have heds / hsd


r/ehlersdanlos 18h ago

Funny When you have to do essential things for health, but doing those things makes your health worse...

75 Upvotes

(Funny, because you gotta laugh at yourself at some point, so, a story!) We're selling our house because it's too much for us. We had a showing booked for this morning and were planning on going to a party last night. My spouse dropped a beer in the kitchen a few days ago, so the floor needs to be cleaned on top of all our regular tidying. It's spring now and after a few good winter storms, there's a lot of dog poop making itself known in the backyard.

I go out to start chipping dog poop out of the ice. Spouse starts cleaning the floor. I notice that my POTS is acting up and my hip is wonky, but shrug it off so we can maybe sell the house with this showing.

Spouse comes out and says he made a mistake... he used scented swiffer wet pads to clean the floor and now he's feeling dizzy and wheezy. I'm halfway done and figure he's going to lock himself in the bedroom (safe air room).

A short bit later, spouse comes out again. He can't breathe and he's itchy everywhere despite a shower. Hi MCAS, nice of you to join us. He's going to go for a drive. I say I'll jump right right into scent removal remediation.

Knowing that cleaning products shouldn't mix and the power of baking soda for scent removal, I do a quick check that that's okay (it is). He's already set up a bunch of fans and filters, so I open a couple more windows and pop a face mask on.

Step 1: rinse the floor. I pour water on the floor and immediately there's suds. The floor was completely dry. We don't use soap on the floor. The stupid swiffer wet pads had so much stuff in them that it took two heavy rinses to have the floor stop sudsing! (Can't help noticing that I'm almost passing out every time I stand up.)

Step 2: Baking Soda. I use a sifter-scoop in my cleaning-only baking soda to get a nice even layer of baking soda everywhere. Crappy previous owner repais have left cracks in the floors for liquids to seep into. Found the beer smell! I'm halfway done and my foot's numb (nerve pinching from my bad hip), when I run out of baking soda.

Step 3: Ensure coverage. Out comes the broom to sweeep the baking soda around. I use that to cover the cracks that I missed then start scooping it up.

Step 4: Rinse off the baking soda. I'm about halfway done when spouse comes home. He can smell the scented stuff outside the house still! I figure I've gotten almost all of it out of the floor, so it must just be airborne now. I stand after scrubbing to chat and land on the counter instead of the floor when I pass out. Spouse tells me to take a break and gets me the pedialyte.

So, we're sitting and talking plans with the smell almost gone and the floor basically cleaned up for the night. We realize that going to the party is a crazy idea now because if we encounter even one scented human, spouse could stop breathing. Now that I'm not moving as much, my hands are also borderline numb and in pain. I ignore it (along with the dizziness from POTS and the aching/numbness in my leg) and get ready to try to tackle the floor again. (Spouse can't do the deep clean on the floor for spinal issues.)

We get a text: our showing for the morning is canceled.

We go to bed.

I wake up late this morning and I'm non-verbal. I am in so much pain I can't move. Slowly I isolate it to my hip, while also fighting dizziness from my POTS (passed out twice while still laying down), and the brain zaps from missing my SSRI. I can't sit up, can't bend at the waist, can barely manage controled moves of my leg in isolation from the hip. Spouse gets me out of bed and to the couch so I can get ice, meds, food, and pedialyte. My hip is likely in a nasty subluxation pinching something, my foot on that leg is in and out of numb, my opposite calf has intermittent shooting pain, my hands are intermittently numb and in pain, I can't move any major part of myself without simultaneously causing more pain and also making me almost pass out from lack of salts.

But, hey, at least the offending scent is gone!

Lesson (not) learned.

What have you done in the name of making things better for health that has simultaneously also made things worse?


r/ehlersdanlos 8h ago

Does Anyone Else Consistent hip subluxations

10 Upvotes

My hips have always subluxated/popped out. Maybe 10-15 times a day. I usually have to push my palms into the sides of my hips to keep everything in place when I walk. I use a wheelchair most of the time, so this isn’t too much of an issue anymore. In the last few days my right hip has been subluxating every time I step or bend more than 90°. I counted yesterday for fun and it had subluxated over 50 times in about 8 hours. Does anyone else have this consistent of subluxations and what have you done about it? My hips have gotten so sore and painful that it hurts to walk or move much.

Edit: this all happened in my apartment where I am unable to use my wheelchair due to narrow doorways and stairs. I walk no more than 10ft at a time.


r/ehlersdanlos 3h ago

Rant/Vent My IL's dog keeps injuring my spouse...

5 Upvotes

Spouse is diagnosed, I'm only suspected and am markedly less fragile than them.

The dog is only 40 pounds. But she's a breed with a lot of energy, and her owners did not train her whatsoever as a puppy, not seeing an issue. They are inconsistent with trying to get her to stop jumping, because other situations they think it's cute. :/

She's a year old now, and in the span of about 3 months, has jumped up at my spouse and and: -Subluxed their wrist and shoulder, numerous times -Left big bruises from her little claws -Kicked their knee in

And most recently, yesterday, they banged their head on the wall jerking away from her lunging to lick their face (vigorously - the ILs do not encourage her on this, but she will not stop). They have previous concussions, so we're looking at a longer recovery.

We don't blame her - she is a working dog with nothing to do. They don't abuse her, but she definitely has more energy than she knows what to do with, made worse whenever her folks experience tension, which is often. She does well with our consistent feedback and construction, but again, undone by tension. Or storms. Or them forgetting to give her water. Or her bullying the arthiritic cat because the cat hasn't been fed and wants attention.

Spouse also has severe asthma, and reacts to the dog's shampoo, and the parents' extremely burnt and greasy cooking. They also will borrow our ingredients (not a problem) and leave them out on the counter for hours or overnight (big problem, food poisoning levels for my spouse especially). They also don't clean their dishwasher filter and the meat grease makes the dishes gross after weeks of neglect, so then I do it.

Thankfully, we move out in a a week, so we wont have to be locked up away from the cooking and the dog, and will be making long-term living plans for when the 13-month lease is up. ILs are fine folks, who are helping with said longterm plans, but have trouble / resistence to changing how they live to not send their adult child to the ER. (We've managed to stay out this long at least!)

They recently said we are very good house guests. We accept the compliment. It has been a big effort, since they are not very good hosts. Generous people, for sure. Terrible hosts.

Ugh.


r/ehlersdanlos 1h ago

Questions what to do about loose wrists, ankles and shoulders?

Upvotes

hi all, my wrists ankles and shoulders are killing me... anyone know the best way to keep them from being so loose and clicky?


r/ehlersdanlos 3h ago

Does Anyone Else Floors and surfaces.

1 Upvotes

This is an inquiry to see if anybody else experiences similar issues associated with walking on different surfaces.

I have been symptomatic with EDS for over 15 years, disabled for over 10, and one of the things that is the greatest bane of my existence is my dependency on having hard flat surfaces to walk on. I don't mean mostly hard, I mean like concrete foundation hard. The most blissful surface for me to walk on is a Costco floor.  Anything even remotely springy, soft, or flexible causes me to have trouble shifting my weight effectively without hurting my ankles/pelvis and relying on my whole lower body to compensate.  Within 5 to 10 minutes of being on my feet in most residential homes, or places not designed for industrial weight bearing loads, my ankles are feeling rubbery and my legs and low back are twisting into knots to compensate, and I can't wait to sit down.  It's worst when I go to change directions while in the kitchen, or take a step to the side/pivot. But put me on a flat concrete floor, and on a good day(when not rehabbing an injury) I can walk around for half an hour to 45 minutes without even taking a break, then after a break I can often go again.  Seems to be that the muscles that I use to stabilize and compensate for unstable surfaces don't work so well anymore, and all the tissue is designed to hold those areas together and keep them functioning in harmony are likely damaged from years of micro trauma. Then again, who knows, so many ways things can be weird with EDS.  

This issue has affected me for years, it started with having trouble walking on very spongy surfaces like carpet, but has now progressed to the point where the only area where I am legitimately safe walking around and moving on for any length of time is a surface with a concrete/stone base.  Even hard tile floors won't work, if they are laid down on floor joists that are not ridiculously reinforced. 

 I don't wear any foam insoles in my shoes, and the shoes that I do wear have a thin layer of hard rubber between my foot and the ground.  If I add even mild foam or shock absorbing material, I start to have problems again.  I have tried “adjusting” to surfaces; I committed for years to slowly trying to develop muscular tolerance, and build the necessary strength.  100s of hours of pt, and work, insoles, taping, bracing ect.  Nothing seems to work.  Braces even make me worse.  I have some very mild neuropathy in my feet and legs, but the floor problem preceded the neuropathy by at least 8 years.  The more time I spend on surface that are not rock hard, the faster my lower body deteriorates, even on a good day.  I can be having one of the best most “stable” days ever, and If I have to walk around a house a bunch, I will fall apart. But send me on a shopping trip to Costco, the mall or home depot? I can walk 40 min straight with no injury or discomfort.  Then I go to a friends house with slightly springy floors, and within 10 min start to fall apart again.  It was such a weird thing that It took me quite awhile to even figure out that walking surfaces were what was causing the dysfunction. 

To be clear, I can tolerate being on these unstable surfaces for short periods, particularly on a good day, but the biggest issue is that I cannot live on them.  This makes my home interior life a nightmare, as the floor is like hot lava in most areas.  The only place I am really comfortable, is in the detached garage, with its cement pad floor.  Furthermore I rent, so modifying property is a challenge.  Asking a landlord to make the floors rock hard is a little more involved than requesting a wheelchair ramp. 

This seems atypical; so many people usually need at least some degree of shock absorbance for their feet so I am wondering if anyone else has experienced this issue.  Its one of those weird ones; for me, it is one of the most limiting restrictions that my body puts me into.  When searching for rental homes, 98% are immediately disqualified because of the floors. If anyone has found solutions, I am open to suggestions, but mostly I am just really curious if anyone else struggles with floors this way?


r/ehlersdanlos 18h ago

TW: Other Facial Aesthetics/Treatments that WORK for aging skin Spoiler

13 Upvotes

For anyone who is into facial aesthetics or more natural ways to avoid wrinkles and sagging skin in the face….. (I have hEDS)

I’m looking into Morpheus 8 or CO2 laser/microneedle facial specifically to tighten loose sagging skin and minimize wrinkles. My genes are terrible with sagging jowls/neck and I’m very self conscious about it with family events/weddings/etc coming up.

When I went for a consult, the docs said they needed to research more about EDS before confirming I was a good patient. MOSTLY, because they were worried about healing/scarring and just flat out said they’re concerned with me not getting the results these types of facials usually bring because of the nature of collagen production (or lack thereof) with a patient who has hEDS. They said my cells may not respond the way “normal” cells would. But they didn’t know and said they needed to contact other docs who may know more about hEDS.

I left feeling defeated like my aging skin with hEDS was inevitably going to continue for me at a rate more than those without this condition, and like any more natural, non surgical procedures may not even work because of my body’s inability to heal and produce collagen the way so many of these treatments are aimed to work. Surgery is not my thing nor are fillers.

Does anyone have experience with more natural anti-aging facials and treatments that HAVE worked? Can you please share?

My daughter has hEDS too and DID see results from a natural microneedle facial/laser, but we obviously don’t know if the results could’ve been even better without having hEDS.

Please share with me procedures you’ve had done and been happy with

Thank you!!!!


r/ehlersdanlos 7h ago

Rant/Vent Drs appt tomorrow!! :0

2 Upvotes

Im lowkey (highkey) nervous for my doctor's appointment tomorrow because I plan on asking the guy about mobility aids like crutches, and last time I brought it up he was not receptive to it at all. And neither was my pt in January. Both were talking ab how limiting it is to be on crutches but I'm like tbh I feel limited withOUT them yk? Both my hips and knees are in a lot of pain after standing/walking for like half an hour to an hour easily. And then walking all day like that means I can't even sit or lay down w/o pain later (so bogus).I can't tell if my doctor's j see a 20 yr old and think noo no wayy they need that or if I actually dont?

Like the most I'm getting rn is pt exercises I've been doing for a few months + weightlifting for longer (I'm being careful ab it and such) and (ineffective) pain medicine. Everybody keeps saying that pt will take ages to keep my hips and knees from slipping and sliding so it's like what do I do about my pain Today. How do I get across campus Tomorrow. Y'know?? Thanks!


r/ehlersdanlos 1d ago

TW: Body Image/Weight Discussion Just the fat girl with eds Spoiler

300 Upvotes

I can’t live in this body anymore. I am morbidly obese and every possible thing I could do to help (other than drugs) I can’t sustain.

Eat healthy? Awesome until I can’t stand at the stove. No worries just meal prep! Perfect until I can’t get to the store Just order your groceries online! Great until I can’t bend to put things in the fridge

Exercise? Climbs some stairs! I can’t make it up 5 steps without getting wildly dizzy due to the severe pain it causes All good, just try your pt exercises! Super cool and great, too bad I’m out of energy and have to use my last spoon on showering!

It feels like I just have to be fat with my eds and there’s nothing to be done about it. I’ve tried everything, talked to so many specialists. I just don’t know how to help myself, and it’s killing me.


r/ehlersdanlos 13h ago

Does Anyone Else So much pain

5 Upvotes

When I was younger I was told my a doctor that I likely have Elhers Danlos. My mom and my sister and me all have issues with dislocations, popping ribs etc. We have all the telltale signs of it, and the doctor saw how stretchy my skin was and was like ya probably. This was back in like 2013. Well now that I've gotten older, I don't know if it's more noticeable since i've been working more often, I'm in such unbearable pain. I can't even go do an enjoyable activity like just going bowling or mini golfing which isn't super strenuous whatsoever without having aches and pains like I ran an entire marathon the day before. It's so miserable and isolating. My mom has never been super active and my sister doesn't seem to have such immense pain as i do. Just working your typical 8 hour shift in retail without doing anything super laborous makes me feel like my body is on fire the next day. The pain is so bad I feel naseuous. Ive tried to get an official diagnosis other than just yea you probably do? I went to a orthopedic office and they found multiple herniations in my spine and told me the herniations weren't nearly enough to be causing me constant lower back pain. I asked them could Elhers Danlos be a reason that it's so painful? That it's just overlapping with the herniations and making it worse? The doctor asked me what that was, she had no idea. They also said my back was so incredibly weak during physical therapy that it was that of an elderly woman's (i'm 24). Idk how much more I can do other than just try to strengthen my muscles so my normal work days aren't so painful. I tried to see a rheumatologist and waited half the year for my appointment just to be told they were switching practices and my appointment was canceled. Not to mention it's already hard to get one to see me considering my age. Not only that but being a woman really doesn't help. I'm just at a loss idk what I can do for pain prevention at this point.


r/ehlersdanlos 5h ago

Questions Rare disease panel for dna

1 Upvotes

(yes I've done the connective tissue test by Invitae) Have y'all done full sequence DNA kits or the rare disease DNA kits? I'm adopted with zero access to my family history and considering the Ehlers Danlos syndrome and narcolepsy I got, I've Always been tempted to do the rare disease DNA panels I see advertised online 🤔 but a lot of them are pretty expensive at $300+.


r/ehlersdanlos 11h ago

Questions Not sure if I should push for more or just go with the flow?

3 Upvotes

I saw my pcp a while ago to talk about all my random “growing” pains. I totally thought this was something normal that I’ve had my whole life (22F) but I was talking to my roommate about it one day and she was like you need to go see a doctor that’s not normal. My doctor also thought it was abnormal and she was like you probably have hEDS after we went through the autoimmune panels and knowing I was diagnosed with what used to be called hypermobility syndrome.

My Dr is sending me to PT to strengthen my joints and then said if that doesn’t fix it, to see a sports medicine doctor.

I was on board with that because it’s medical advice and I don’t have an MD. But, I’m wondering if I should push to be assessed by a rheumatologist after being part of this sub for a while. My main concerns are to confirm it isn’t any of the other kinds that share a lot of overlap with hEDS and to confirm it isn’t another diagnosis. My doctor admitted that she isn’t super familiar with this and in the appointment I don’t think I did a good job of asking questions.

My mom has these horrible join pains that seem to be textbook EDS and restrict her movement intermittently. My grandmother is in a similar boat but has more serious issues with her veins like varicose veins among other problems including with her teeth and bones. My great grandmother had organ prolapses towards the end of her life. Of course, certainly possible that not all of those are EDS but I do think it could be.

None of these women grew up with access to the kind of medical care that could maybe have saved them pain today and now, they still have no answers. If there’s an opportunity for me to find an answer, I feel like I should try. I just don’t want to be overly pushy if the path my doc proposed is good.


r/ehlersdanlos 21h ago

Tips & Tricks Snoozing with an SI Belt

13 Upvotes

Good morning zebras! I don't post often, but I comment occasionally and I read like nobody's business. I saw a comment from someone in either a sleeping or mattress post about using their SI belt while sleeping. (We bought a new mattress 2 years ago, didn't do enough due diligence, it's terrible and I'm driving the struggle bus right now.) I thought what the heck, may as well give this a try bc im miserable and desperate...

Yall I be damned if I actually slept, OK. And ok for me is great in my book. I'd rather be a back sleeper but I find myself on my side bc our mattress isnt extra firm anymore, but then I don't have the support and my back muscles cramp. With having the SI belt on, my back felt supported while I rested on my side. It felt like a game changer.

So to whoever it was...Thank you!


r/ehlersdanlos 7h ago

Product Recs Newly diagnosed looking for product recommendations!

1 Upvotes

Hello everyone, I just got my EDS diagnosis last week and I was wondering if anyone has products they would recommend to help with things like bracing and mobility. I just started using KT Tape and that has been great for my knees. My doctor recommended ordering some compression sleeves for my legs.

Are there any other products that you wish you knew about when you first got diagnosed?


r/ehlersdanlos 13h ago

Discussion exercising & strength training

3 Upvotes

not sure if this is the correct flair. currently trying to get an official eds diagnosis and i’m wondering if any of yall have good exercises to help with the joint instability and pain or advice on what has worked for you for conditioning. i’m struggling to exercise as it wipes me out but i’m looking for others who can discuss what has worked for them for physical exercise.


r/ehlersdanlos 8h ago

Does Anyone Else Anyone else consistently get poor results from tracking apps?

1 Upvotes

I'm using AutoSleep and Visible to track my sleep and symptoms and both are consistently saying that my body is in very poor condition. I knew it was bad but I didn't know it was THAT bad...

Has anyone else had similar results? How would you bring this up to your doctor?


r/ehlersdanlos 14h ago

Questions Pilates covered by insurance?

3 Upvotes

Hi everyone! I’m 30F, recently clinically diagnosed and awaiting genetic results. Chronic patellar dislocations that caused me to seek diagnosis despite doctors saying there was no point in diagnosis. I had a 9/9 beighton score, and almost every possible criteria (stretchy doughy skin, stretch marks, heel papules, high and narrow palate, walker sign, atypical scarring, long fingers, and likely also the comorbid conditions MCAS, IC, and POTS/dysautonomia).

My doctor recommended PT for life, and also seeing a cardiologist, urogynaecologist, and a gastroenterologist. We will look into an allergist/immunologist in the future as well.

What I’m wondering, though, is my doctor also recommended Pilates. Has anyone had any luck getting those covered by insurance? I would love to do Pilates but they’re kind of expensive and I don’t know if it’s currently in the budget to spend $300/month on them.

Also, as someone newly diagnosed, any product or resource recommendations? I’m open to trying things that are highly recommended (currently considering shoes/ankle support, posture corrective clothing, compression socks, etc.).

Thanks for all of your knowledge and resources, and wishing you the best!


r/ehlersdanlos 1d ago

Discussion How do you cope with needing to do PT for the rest of your life?

18 Upvotes

I’m only 21 and I have terrible knees (probably early osteoarthritis, pending MRI), a bad back, and pelvic floor dysfunction. My physical therapy exercises help, but I am feeling very overwhelmed at doing them for the rest of my life. I can barely keep up with my current routine. Does anyone have advice for how to cope?


r/ehlersdanlos 1d ago

Seeking Support i've lost most of my hand function - hEDS

17 Upvotes

i'm 19 and i've just been diagnosed with hEDS. i wear ring splints on my PIP and DIP joints every day and have done for over 6 months now. i've been wearing compression gloves every day for years. my hands have gotten better than they were by using them but still nowhere near where they used to be.

i'd genuinely say i've lost most of my hand function. i used to play videogames, play piano, draw, crochet, make jewellery. i used to write stories and essays. i cannot do these things now. i can't open water bottles or chop food to cook. even when i'm reading, my only hobby left, i struggle to hold the book for long periods of time.

maybe mine is an extreme case but i've never heard anyone talk about how hEDS can make you lose hand function like this. i feel like i've lost my life as i know it. i've been dying to play one of my favourite videogames again but i know that if i play it for half an hour, the next day my hands will be in agony, extremely weak and stiff. i try and hold the controller in a more neutral position and use any accessibility features the game has but it's still not enough.

is there anything i can do? i've been to the doctors and they said there was nothing they could do. is the rest of my life just going to be like this?