Hello , I'm also a spoonie . So my question is , what major should I choose to research and study about hypermobility or hEds.I want to do something so that People with chronic illness can find a cure .
I'm doing zoology right now .
Thankyou
as far back as i can even remember, i’ve always struggled. i’ve never been able to exist as a normal person. as a child, i could hardly run as i have flat feet, and the pain would become overbearing extremely easily. i was mocked relentlessly for being “out of shape” and overweight.
my issues have only gotten worse over the years, and started becoming extremely prevalent within the last 5/6 years. the last few months have been especially bad. new dislocations, subluxations, worsening muscular and joint pain, dizzy spells, eye issues, headaches, you name it.
i went to my GP a few years back for general joint pain in my legs, nothing. went again a year later as it had progressed, blood tests, clean. they put in an referral for rheumatology, and my rheumatologist said she’d put in referrals for various other specialists, said my joints were hypermobile, and that i just have to get my weight down and do more exercise. it couldn’t possibly be hEDS/HSD! the beighton scale doesn’t lie! its just a weight issue.
i haven’t heard from any of the other specialists (aside from OT, who did basically nothing,) and my next rheumatology appointment had to be moved.
i’m going back to my GP soon to see if theres anything that can be done… but i’m losing hope. every corner seems like another dead end. how do people get doctors to listen to their calls for help?? it seems like i’m just going to be dismissed for the rest of eternity by systems that are failing chronically ill patients who’re struggling just to exist.
i barely did anything with my body, i am only 30 and yes i feel mild pain but i never thought the cartilage in the hip and lower back would have been so damaged, I NEVER REALISED I WAS SUBLUXATING ALL THIS TIME
BEEN told my cartilage is as eroded as that of an old woman
the fillers are way too expensive too , i came with hope of physiotherapy to stabilise my body and i have been told i basically need semi invasive procedures to live normally WHY
Hi, I am wondering what the general consensus is on multivitamins. I am taking a lot of things for deficiencies (iron + vit c, b12, folate, d3 + k2, magnesium) and then also omega 3. That’s already quite a lot. But my diet is not the best right now for a lot of reasons (mental health, intolerances, medications etc.) and so I’m particularly worried about not getting enough zinc, calcium, iodine and other b vitamins. My overall health is struggling at the moment and I need to get on top of it, but I keep hearing that with chronic illnesses often multi vitamins can do more harm and a targeted approach may be better but I’m getting tired of taking so many things and trying to figure out the formats and dosages I need.
Does anyone take a multi, even if it’s only a few times a week, and find it useful?
Before we get into anything, I know the obvious answer is physiotherapy. I'm extremely tired however and not in any actual condition to be going to physio until I've recovered somewhat, so it has to wait for now. Meanwhile,
my upper back muscles have deteriorated it feels like to nothing. Even washing my hands in the bathroom I need to slump down to lean my elbows down to the sink because the muscles in my upper middle back, around the lower shoulder blades in specific, are so weak I don't feel like I can hold up the weight of my chest and head with them. It's gotten worse and worse over the past few years - this is also the region I have the most instability and chronic pain in, and where I get a ton of pinched nerves, it's a constant problem in every way imaginable from the middle back up to the bottom of my skull.
I've been trying to take a few minutes here and there to practice sitting straight to train the muscles again, because that is the absolute most strain I can put on them, the absolute most weight I feel they're capable of handling - but as a result, even from this that feels like it shouldn't even be called "exercise" to me, my whole back all the way down to my hips stiffens, spasms, and develops this constant throbbing/burning fibromyalgic pain that radiates all the way around to my stomach and my shoulders hurt so much because the correct posture makes the trapeziuses relax and then they spasm up again.
Is there... something even gentler I can do to start with?
I've been feeling like I really want to be able to have my legs closer together, but when I constantly sit with my legs stretched out and my feet crossed to keep my legs together it puts strain on certain muscles and leads to a lot of pain.
Do any of you use resistance bands to keep your legs in place while sitting (not while for exercise)? Do they work well in this specific context? Is there a different more niche product I should be looking for? I hate to solve my problem with more capitalism but really looking for some recs here.
The Bondi 8 was discontinued. It is the only shoe I’ve found where I had no pain whatsoever in my hips, back, knees, or feet. I wear orthotics and the Bondi 8 also worked well with those. I’ve been trying various shoes and have pain with all of them. I can’t remember some of them but currently I’m trying the NB More Foam and have back, hip and foot pain. And this shoe is supposed to be the most similar to the Bondi 8. I’ve tried the Bondi 7 and 9. No luck. I’m desperate to find an option since all my Bondi 8’s are wearing out! Has anyone had any luck finding a good replacement?
I’m officially diagnosed with hEDS/HSD, fibromyalgia and CFS. I e recently moved to a new position at work where I’m a lot more physically active than I used to be. My previous job I was mostly sitting at a desk almost the entire workday, now I will often be hauling large volumes of documents around the building(quite large with many rooms), going up and down stairs and doing all of this while having to wear dress shoes (heels, etc). Before I got this position I found it a lot easier to attend my Pilates class on the weekend, but now I’m finding myself constantly physically in pain, fatigued and tired after the work day and during it and by the time the weekend comes around it’s hard to do anything beyond maybe a walk to the shops.
I know Pilates helps my joints a lot, but honestly I’m not sure how to cope with going to class on weekends or after work with currently feeling so run down after every work day. I’ve thought about maybe getting something for my office to try and exercise at work but I don’t even know where to start there either. I don’t drive either, so going to my class requires me to walk and take a bus as well.
Has anyone found any good strategies/guides etc that have worked for them?
Here is my current situation:
I am 21F, and I was diagnosed with hEDS by my primary care in the fall, but haven't taken any steps to ask for referrals regarding that yet because I had other issues that needed to be addressed first. Here I am now, and I'm regretting not asking for an occupational therapy + podiatrist referral sooner. I'm unable to get a doctor's appointment until late July, but my hand pain and foot instability have gotten exponentially worse. I'm looking to relieve my pain and get stability support asap. I do a lot of computer work (work and school), and it has been difficult to type without pain. My hands can get swollen, achy at the joints, and stiff (not in a way that counteracts the hypermobility tho 😭). I have been tested for arthritis in the past, and the it was negative. I do a lot of walking around campus, and around the house, my foot instability worsens my spatial awareness - leading to more bumps and falls. (I also have POTS, migraines that intensify the dizzy feeling).
These are things I have looked into so far:
* My insurance only covers plastic hand splints (I'm not keen on this)
* My insurance does not cover podiatrist orthopedic shoes for my condition
* making diy splints with metal that won't irritate my sensitive skin (wire is expensive! but also my hand pain is at a level where I don't think I can comfortably handmake that right now)
* My grandmother has the same conditions as I; she has seen a podiatrist for shoes, and now she wears the Asics Kayano 32. We both have narrow ankles, high arches, and midfoot and ankle instability (rocks back and forth). She likes them.
* I do simple hand stretches when I take breaks from the computer. Although I'm not sure if I'm doing them right or if I'm just making my pain worse?
My frustrations and where I could use some recommendations:
* Affordable/sensitive skin-friendly metal finger splints (My priorities are thumb and index fingers for now).
* Affordable and/or cuter options for orthopedic shoes that address (as much as possible) the same issues the Kayano 32 does. I know this can be a big ask, I searched around. I just get sad when my health impacts my self-expression and fashion. I wish medical devices were more fashionable; it helps me feel more my age :(.
*Recs for orthopedic insoles (I'm not sure what to get)
* If anyone has experience with seeing an occupational therapist for hand issues, what did they recommend to you (exercises, habits, orthotics)?
*Computer setup/ mouses for hand pain?
I appreciate any helpful advice! Thank you!
ive been in incredible pain with my left knee for like a month and the doctor says its because im lacking strength..but didnt give me any information on exercises or equipment i could use..so im looking for some advice.
I am super hyper-mobile and I am struggling with the limited support I feel is being given to me for my legs- I have only had a few appointments with my PT but my legs are VERY weak and sore; they shake uncontrollably when being stretched even the slightest due to the pain and weakness being so severe.
My PT is aware of hypermobility but I fear they won’t help me unless I ask. I was hoping for some form of bracing (something like KAFOS idk) for my instability.
I miss living life and going for nice walks but I think my legs just keep getting weaker. I can only make it around the short block without severe pain. Today I REALLY overdid it,
Today I had an emergency appointment for legal health documents and had to walk 1km to get them which hurt sooo badly. When I got to our porch I collapsed.
What’s the best way to bring this up? I am someone who is not great at communication and I don’t know how to ask without sounding desperate?? Idk 🤷🏻 I’m tired and just want to feel free again. I need to get my strength back too.
Also any tips for taping with KT? I’m not great at it- my PT showed me but I forgot..