r/eds

My sister and I have hEDS and MCAS. She has been taking cortisone for a few weeks (20mg) and she says life is so much better. No more inflammation, no more migraines, she says she feels like an almost normal person.

But 20mg are too much to take safely, so our GP advised her to taper down. Now she is at 12,5mg and she is devastated. The migraines are back, the inflammation is back, and she is crying non-stop because of how great she felt and how horrible she feels now. She is prone to get horrible trigeminal pain flares that last up to three days that stopped completely under cortisone.

Did anyone experience something similar? She says she doesn't want to return to a world of pain. But the doctor says that cortisone dosage this high has some really nasty side effects.

Please, if anyone had a similar experience: What did you do?

I get this tremor throughout my body and a feeling of severe weakness when I need to eat. It’s most common after a workout or just waking up.

I described my symptoms to PT and PCP and they’re not sure. All I know is that electrolytes and sugar help tremendously with the shaking. The single best thing for me when I have these moments is finding simple carbs.

I tested negative for POTS back in May, though they noted my adhd medication increases my feelings of dizziness and/or hypoglycemia tremor. —>I might be in the subclinical zone for POTS.

Tl;dr I have POTS-like symptoms but don’t qualify for POTS. What am I experiencing called?

Edit: ok so it IS hypoglycemia. I had a hunch but wasn’t certain that explained the feeling of muscular weakness too (like my body feels heavy).

Hi fellow stretchy friends! Doing some of my own correlation research here! Please take this survey and mark all that you have experienced. Please comment if there’s anything on the list that I missed. These conditions are all that I’ve experienced.

So I've had asthma symptoms since I was a child but on 2 separate occasions years apart I was tested for asthma and told I don't have it but was given a blue inhaler anyway.

The reason I don't think it's because of my POTS is because my inhaler actually makes a difference such as, improvements in the quality of my breathing and reduced pain, while people with POTS typically don't have any type of improvement with inhalers. only issue with me taking the inhaler is that I get extremely dizzy which I think is a POTS thing.

I only take my inhaler after doing physical activity that is intense for long periods of time, such as running, because if I don't, it takes me half an hour or longer just to catch my breath and that's ignoring the pain that comes with that type of activity.

So does anyone else have similar experiences and if so, what was the cause. Was it hEDS or something else.

I do not like my newly met spine doctor. I recently had xrays and MRI to check on my worsening chronic neck pain that I've had since 2020. For the past 2 years, the pain is flaring up to a 8/10 for hours and I'm not able to turn my head very far at all.

No Chiari or instability was found, but they did find cervical spine C 3/4/5 all have mild Broad Based Disc Osteophyte Complexes with mild Spinal Canal Stenosis.

-Meaning mild, degenerative changes in those 3 intervertebral discs, occuring alongside the formation of bone spurs (osteophytes) at the edges of vertebrae and overall is potentially the cause of the spinal canal stenosis/narrowing.

I met with a spinal doctor for the first time to discuss these cervical spine findings (and also my spine xrays showing Kyphoscoliosis and an extra vertebra bone, L6)

He said my mild findings are from "normal aging" and did not seem to want to discuss anything with me or about my pain or limited head movement.

I was/am frustrated because he said its from "normal aging"...but I'm only 29 and have been symptomatic for 6 years. From what I've read is that this condition/ findings are common+mild "age related changes" around people aged 50 years old. Not late 20s year olds.

I feel like my doctor brushed me off. I asked him not to compare me to a healthly-normal-aging older adult. I have EDS and my issues are early for age. Plus, early disk degeneration runs in my family. With this condition usually showing up mild in people around age 50, My dads was already so severe by age 49 has had to have neck disks replacements.

Anyway, thanks for listening to me vent about it. Luckly this spinal ortho doctor is not active in my care and will only be on the team to re check my scoliosis curve every few years. Luckly I have a Pain Specialist and a physical therapist who will look after me and advocavte for me. They wont gas light me or tell me I'm normal via comparing me to a aging 50yo.

I’m a 26 year old AFAB (they/them) person and today I was diagnosed with hEDS and POTS.

I bawled my eyes out at the doctor appointment because after years of tests and doctor visits and ER/urgent care scares; I finally feel like I’m not the problem. For my whole life i’ve just been convinced that I am a lazy piece of sh\*\* and that i’m just making everything up bc i’m a horrible person (I have OCD and depression, which I now think might be because of being undiagnosed for so long).

I was told my test were “normal” and that I was “healthy” bc I’m young and it was all “growing pains” and I just needed to loose weight (i’m 5’6 and 180lbs). As a child I was praised for being flexible and did dance and contortionism competitively until I dislocated my knee when I was 14 years old. I’ve suffered from chronic pain, knee and ankle injuries, chronic fatigue, nausea and other symptoms my whole life. But since every doctor said I was “healthy” I just convinced myself that everyone lives their life at a 4/10 of pain and that I was making it a bigger deal than it needed to be.

Today was a HUGE win for me. I have always felt that something was wrong and now I finally understand why. I’m angry and sad and grateful and joyous and worried and all the things. Poor doctor had to deal with me crying on his office for 20 minutes after he told me. But they were happy tears for the most part.

So here’s what im struggling with now: I know these are chronic conditions with no cure… but where do I start with symptom management? What works well for you? what are some tips or tricks you’ve learned that make life easier for you?

My doctor basically just said I need to start swimming and exercising. But how do I make myself do that when I’m in so much pain? what is a good way to start? I haven’t been to a gym since my pain got worse around 2023. And I walk my dog every day but clearly that is not enough bc I’m always in pain. I just love my dog so much that I force myself to do what is best for him.

Idk what exactly i’m looking for and Idk if this is even the right place/way to ask for help. I’m new to reddit. I just really need to hear from other people living with these conditions and how they make it work. What is one thing you do that actually helps but isn’t something a doctor would know to recommend? is exercise really the only treatment?

If you made it this far, thank you for reading. Even just writing this down made me feel a little better (also, english is not my first language, I apologize for any typos) <3

Tagged as nsfw just in case ,I do mention accidentally cutting myself.

My ankle skin is basically the super stereotypical heds very soft stretchy skin and coupled with my ankles being my most hyper flexible and most used joint, I'm used to them being heavily bruised and cut up. But recently, and I don't know what the trigger is, my skin has been extra fragile and sensitive and I was shaving my legs like usual and it folded up and what would've been a small nick became four pretty hefty cuts into my skin. Just wondering if anyone else has experience with this and how they avoid it/treat it because I feel like most standard wound healing techniques take way longer with me or just don't work and I scar more than most people.

For years, multiple providers suggested I might have EDS. I have a primary immunodeficiency and have had multiple orthopedic surgeries. An orthopedist referred me to a rheumatologist who said I didn't really meet the Beighton scale criteria and said I would have to see a geneticist to really determine it. I recently saw another orthpedic specialist who referred me to this big-deal neurologist in my area who is apparently highly specialized in EDS/POTS, etc. They do a pretty thorough screening to determine if they think you're candidate to be seen. I went through the screening and they are saying I'm an appropriate candidate.

This physician doesn't accept insurance and it will be a very expensive endeavor to see him. My question is - is it worth it to get diagnosed? How did your life change after getting a diagnosis? My understanding of EDS is that it's not really treatable so I'm not sure what I would gain other than having suspicions validated. I am prone to dislocations and have pretty well figured out what I can, cannot and should not do with my body to maintain joint integrity. I'm active, exercise and stay as healthy as I can. I'm just not sure if this is worthwhile avenue to pursue especially given the cost.

We finally figured out what was going on with my daughter last year when she was 10 and suddenly managing her insane "growing pains" got so much easier. When she has joint pain, now I tug on the joints and try to get them back in place. Her pain has been way more manageable.

Here's my problem: I'm just making this up as a go. I tried to ask her physical therapist what I should be doing and she gave me a half-assed explanation. I don't know, maybe she's worried about a lawsuit or something.

My technique seems to work okay on her knees and elbows but ankles and shoulders are trickier. This weekend she's suffering from ankle pain that started suddenly when she crawled quickly across the ground. Nothing I'm doing is helping and of course no one's open until tomorrow. I'm also worried about how she will manage this when she's grown up.

So I'm hoping you guys can share what you do when your joints pop out of place. How do you get them back in place (references to videos or guides would be great!) and can you fix them yourself?

I posted this on the EDS fb group in my area too but..

A little bit of a rant today.

After more than 10 years of navigating and managing a million health issues from EDS, it's sometimes hard to believe this is my life. There have definitely been ups and downs, and I'm grateful for the things I been able to experience. But I'd be lying if I said I don't grieve everything that's been taken away...my career, friendships, school, independence, financial opportunities, and so much more. I got sick right when I was supposed to be starting my life.

Lately, my biggest grief has been feeling like I ran out of time and opportunity not because I didn't want those things badly enough, but because I simply didn't have the health, energy, or resources. There was so much I wanted to do, but so much of my time has been spent in bed or on the couch because of severe fatigue.

For those of you living with EDS or other complex chronic illnesses, what helps you feel like you've contributed to the world or to your own life? Do you have any hobbies, projects, or small things that give you a sense of purpose?

I've thought about creating free resources for people with chronic illnesses that could be useful from bed, but then I wonder if AI can generate most of that in a few seconds. I've also always wanted to write a book.

I'd really love to hear your thoughts or ideas. anyone else??

Sometimes I feel like those 90s bead toys where you press the button on the bottom of the base and the figurine flops over. My joints struggle to hold my limbs in place without emense pain. Currently the issues are in my shoulders. There's K Tape but I'm allergic to adhesive.

I get my fiance to massage the muscles near the joints but it doesn't get to the root of the pain. It feels like my shoulders are inches away from dislocation and there's no position I can put my arms in to relieve any of the pain. I'm on a couple types of pain meds but it doesn't really touch the bulk of the pain either.

Does anybody have any tips on getting the pain to ebb? Just to make it bearable to function? When its my knees I just use my walker and take lots of rest, but it's harder with my shoulders because even laying down, they still ache.

Hi,

I am currently 28 years old man and have had multiple surgeries due to nerve entrapments, rapid scar tissue build up (recompression), and stretching of my labrums. As a teenager I lifted heavy weights five times a week sometimes twice a day and practiced 3 different martial arts four to five times a week. I injured myself for the first time at 15 years old using improper deadlift technique. Since then I’ve gone through spurts of times where I could lift hard and heavy and have no issues and then out of the blue I’d get injured and then more injuries would rear their ugly heads. I am in pain most of the time. I have gotten to the point where surgery is the only thing that gives me hope. This is of course until I mistakenly do something prematurely and my body regresses to the pre op symptoms. My surgeons and physical therapists have mentioned a form of EDS. However, I don’t pass the Beighton test, I am not flexible in the least bit, and big name hospitals won’t take an interest in me because I don’t meet the criteria (even after receiving a referral). Below is a list of parts I’ve had operated on. Tell me what you think.

Shoulders x5
Radial Tunnel decompression x3
Carpel tunnel x3
Hips x4
Core Muscle Surgery X2
Cubital tunnel decompression x2
UCL reconstruction of elbow x1
nTOS removal of rib and anterior scalene x2

Thanks,

-Charlie

Hello!
I’m new here but currently I’m struggling to sleep comfortably because my shoulders fold when sleeping (iykyk).
-Does anyone know of ways to help with this?
I’m a nearly exclusively side sleeper and I’d tried many pillow recommendations that just don’t help. I’m open to exercises or really anything I haven’t tried!

Hi all! Over the past couple of months I’m slowly coming to accept that I’m likely hypermobile and that a lot of my chronic pain is caused by my hypermobility.

Today I went to the Fourth of July parade and my knees, ankles, and feet were killing me. It felt like I was sinking into my knees and ankles and my feet started feeling like they were burning. The only way I could get relief was to roll onto my toes or roll onto my ankles. Now that I’m sitting and lying down, my knees and feet are still achy.

Does anyone know what causes these sensations? I’m trying to keep better track of my symptoms so that I can present them to my new PCP but I don’t feel like I have the language to describe them accurately. Thank you!

I guess a sore throat every time i'm around nephew any advice

I want to preface this by saying I am a young adult, and I was perfectly healthy until recently. Not the kind of person that would get mystery symptoms for no reason. I am not diagnosed with anything yet, but I have a 5/9 Beighton Score, some pelvic floor and mild autonomic issues, and other mild issues. In the words of the rheumatologist I saw this week, "You don't have a serious disease, just mild joint hypermobility and some symptoms that are not present in general population.". I will be seeing a Physiatrist soon.

I read about some of you hearing "you are too young to have health problems!", but I kind of had the opposite problem, in a sense. It's so absurd it's funny.

"Everyone has knee pain in [city], it is very humid here. I also sometimes have knee pain. You are really getting hypochondriac." - my aunt, who is 30 years older than me, obese, and has Rheumatoid Arthritis.

"Palpitations aren't a sign of something serious. I also sometimes feel them when I lie down without moving." - my father, who is 30 years older than me, obese, and has high blood pressure and cholesterol.