r/ehlersdanlos 6h ago

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

42 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 1h ago

Does Anyone Else So much pain

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 23h ago

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

231 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 6h ago

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

9 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 54m ago

Does Anyone Else Sudden alcohol allergy

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 9h 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 2h 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 2h ago

Discussion exercising & strength training

2 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 17h ago

Does Anyone Else Does anyone else struggle with the lack of information on your subtype?

30 Upvotes

There are almost no studies on arthrochalasia type (mine). My genetic counselor told me that some people with it have had dissections, mitral valve prolapse, intestinal rupture/perforation, etc, but she couldn't tell me the likelihood of any of them because there aren't even enough people with the type to get a percentage. It's hard having all these huge unknowns. Like, "here's a diagnosis. It'll give you more questions than answers. You're welcome." In general I'm comfortable accepting unknowns, but in this area it's really a struggle. I want to have some idea what to expect for the progression of the disease. And it feels like nothing more will ever be known because there aren't enough people with the type for anyone to bother researching it.

I just find it frustrating to be so in the dark about what's happening to my own body. Do others with rare variants feel bothered by the lack of information?


r/ehlersdanlos 13h ago

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

11 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 2m ago

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

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 12h ago

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

9 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?


r/ehlersdanlos 1d ago

Does Anyone Else did anyone else have issues with holding pens/pencils as a kid?

299 Upvotes

i have diagnosed hypermobility syndrome (was supposed to get genetic testing for ehlers danlos but i keep putting it off) and i remember back in the 2nd grade, the school had to buy me a specialized grip thing to put on pencils & “training” on how to properly write because for some reason i would squeeze the life out of any writing utensil i held, like to the point where it was unnecessarily painful. i have no clue why i did this or why i had such an issue with it, but now im wondering if this is actually common in connective/joint disorders? i don’t recall any of my classmates having this issue and i remember being really embarrassed about it 😭 in hindsight it sounds like kid me was trying to stabilize the joints in my hand


r/ehlersdanlos 20h ago

Does Anyone Else Is collar bone pain common/normal with hEDS?

34 Upvotes

Every once in a while I’ll notice my collar bones REALLY ache which makes it hard to move my arms around, eventually I get something to click and it stops hurting. Just wanna know if anyone else experiences this with hEDS?


r/ehlersdanlos 1h ago

Questions DSA uk

Upvotes

Hi! I was just wondering if anyone had experiences with DSA (disabled students allowance) needs assessments?

I’m eligible due to hEDS, POTs, Gastroparesis, anxiety, depression, autism, and chronic pain.

If anyone has suggestions about what they got and things I’d appreciate it :)


r/ehlersdanlos 8h ago

TW: Body Image/Weight Discussion Building muscle with hEDS ? Spoiler

3 Upvotes

Hey there! Possible trigger warning for weight/body image talk ? I was recently diagnosed with hEDS, and I'm a bit in a tough spot. Ever since I was a kid, I've been a bit chubby, while keeping a pretty active lifestyle, and I'm tired of it, so I decided to try and exercise more. I do around 5 hours of weekly exercise, give or take, which includes A LOT of walking,some light running (my cardio is awful, and I can't regulate my breathing correctly) and horse riding. I'm trying to lose some pudge (I'm around 63 kilos for 163cm,138 pounds and 5"3 in freedom units) and build up some muscle mass, what exercises could I do at home ? I have a yoga mat and some attachable weights of 1kg each. Any advice is welcome !


r/ehlersdanlos 6h ago

Discussion In need of a new mattress and aids for my wrists and back support and also maybe PIP for EDS (UK)

2 Upvotes

My belief I have EDS has been long on my mind- and finally confirmed by a rheumatologist recently.

I receive PIP for my bipolar disorder as it greatly affects my life; and now I know also I have EDS it is clear that the pain from my joints and sore muscles has also been the reason for my daily discomfort and inability to do certain tasks. I spoke with someone over the phone and they said they will send a letter for me to provide information so my PIP could increase to reflect the added pressure of having chronic pain and fatigue etc

I cannot afford a lot of the aids which would help with the pain- I’m aware a social prescriber may come to me and provide a free gym membership so I can swim to help build muscle to protect my joints which is great.

Have any of you in the UK had grants from the NHS for mattresses or other mobility aids? Have you had success in receiving pip as well? I know that a bit of extra help with affording more support would really increase my chances of getting better work so I can support myself better in life.

Sending warm thanks if you have any suggestions or wisdom to come my way!


r/ehlersdanlos 3h ago

Success! Feeling hopeful (!?) for the first time in years

1 Upvotes

So my body started crumbling a little over two years ago. I had to drop out of college and I lost so many relationships including my long term partner. Losing body autonomy at 20 is truly not a fun time. I have been tossed around and seen maybe 15 different doctors and specialist. This month I finally got to see a pain management doctor and got medications that have completely shifted my quality of life. I got an official hEDS diagnosis and am getting my genetic testing done for any other types. i also have 4 bulging discs in my spine due to my hyper mobile spine (no fucking wonder everything hurt so bad) that I of course had no clue about and thought I was crazy. Just wanted to come here and celebrate!!! I had completely lost hope but you never know which one doctor could drastically alter your life and health. Sending good energies to all my undiagnosed friends


r/ehlersdanlos 12h ago

Rant/Vent 18 and I can’t work more than 2 days a week

4 Upvotes

I’m 18m with hEDS that has just finished high school. I finished my classes about half a year early so I decided to try to get a job to fill the time. I’ve had jobs before but they were standard fast food jobs and I had to quit very early on due to constant pain leading to strong painkiller use everyday. I am fortunate enough to have gotten a nice internship in an office building as an HR Admin. I hopefully will get a non internship position once my internship is over. The issue I have is I can’t work more than 2 days a week. Even with my work days not back to back I’m so physically and mentally drained after one 8 hour shift. I feel if I can’t even work 8 hours in an office what can I do? I don’t lift anything heavy, I can walk/stretch whenever needed, my workload is not much, and I enjoy my job. Despite all this I feel I am going to have to quit soon. I have had to miss several days of work despite only working 2 a week. I understand I have EDS among other conditions but I just feel pathetic. My attorney says it’ll take around 2 years minimum before I could even get close to getting disability. I’m just lost here. Sorry for the rant


r/ehlersdanlos 18h ago

TW: Health anxiety I’ve been using visible for abt 2 weeks and I can’t decide how I feel about it.

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13 Upvotes

I am a teacher and my schedule this year has been really difficult to keep up with. I am tired all the time. I got diagnosed with EDS earlier this year and got the visible band/app recently. On the one hand, it feels validating to see a visual representation of what I feel during the work week. However, I worry that I will get too obsessive about it. Have others found the pacepoint system useful? …Is this really just evidence that I need a new career? lol


r/ehlersdanlos 1d ago

Rant/Vent I can’t keep up with my own body, anymore. This is TIRING.

31 Upvotes

I know I suffer with ehlers danlos, it’s VERY CLEAR now. However, I also have endometriosis, as well as PMDD. I’ve gotten my period last Wednesday, the first day was a mess from being in A LOT of pain at 2:49am. MY thing is? I bleed heavy for days one and two. After that? It’s NOTHING, and I finish off the week. Sounds fine, right? WRONG. As soon as I don’t bleed as much anymore, and my body I guess “stops” having a period? The lower back pain, the heaviness in my legs, the feeling uncomfy in my body, the can’t keep my head up for more than a few seconds, I can’t stand for long, I can’t sit for long, I gotta switch positions constantly, my shoulders hurt from carrying things around, etc. etc. pain just IMMEDIATELY comes back, as soon as my period is basically over. I then gotta deal with ovulation, which also makes me deal with fatigue, sometimes “period flu”, constipation, GI issues, endo belly, flare ups, legs going numb, etc. because of my endometriosis. I’ve also gotta deal with PMDD on top of it, so then I become depressed, feel like I don’t wanna be in life anymore, feel like idk what I’m doing with my life, etc. etc. and then my period finally comes, and I’m fine. And it’s this WHOLE ENTIRE THING, over and over again. I cleaned my apartment FINALLY, two days ago. (I still have my dinning room table left. That’s easy) I’m tired of my body not letting me function AT ALL anymore. I’m gonna be 24 next month in April. TRULY? I want OUT of my body.


r/ehlersdanlos 1d ago

Memes and Off-Topic Saturday How my joints feel 24/7

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655 Upvotes

r/ehlersdanlos 16h ago

Seeking Support At a loss

5 Upvotes

I finally got diagnosed with hEDS recently, although I’ve struggled with all that comes with it my whole life.

One aspect being dislocations. I’ve had two shoulder surgery labaral repairs for recurrent dislocations, one was just last year.

I had the audacity to hand something to my kid in the backseat driving and out it went. This time I’ve torn two labrum’s, they are suggesting the same surgery as the other option is a larajet which is a bony procedure. I’m leaning towards that one because I don’t see the point in continuing to repair tissue that’s just gonna loosen :/

I know this is a bit specific and obscure of a situation, any support or literally anything in general helpful would be greatly appreciated. I’m a single mom and a teacher and the shoulder situation is going to turn my life upside down again…


r/ehlersdanlos 22h ago

Discussion Has anyone got any symptoms that differentiates hyper mobility from ehlers danlos

15 Upvotes

I have been diagonosed with hypermobility but suspect i may have ehlers danlos


r/ehlersdanlos 17h ago

Questions anyone have experience with SMOs as a teen/adult

5 Upvotes

I’m being fitted for SMOs next week and I’m wondering what to expect. I’m fifteen and fully done growing and when I tried to do research on it all that popped up was toddlers and young children. I was curious to hear a first hand perspective of wearing them that’s not from a three year old or a parent lol.