r/ehlersdanlos

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I have seen a handful of posts about JellieBends but none which answer my questions. I am a small person but very lanky as far as limbs go, so I have always had trouble with sizing of wrist or hand braces. The JellieBend wrist braces are one size fits all; has anyone with small wrists tried them and find that they work well enough? I have been doing yoga recently and having lots of wrist pain/weakness. If anyone has hand compression gloves recs I'll take them too! I have arthritis in my hands and can't find any that are both tight enough on my fingers and also long enough to actually cover my middle finger joints.

I also want to get the shrug because my shoulder issues are horrid, but I am in between XS and S and since it's a relatively new product I'm not certain if it would work for me.

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Not a full trigger, but I am talking about my body shape.

Ok I don't know if this is a normal human thing or if it's a hyper mobile problem but I don't know how to lay down? I have a slight hourglass body shape (that might be my problem!?) maybe not?

Why laying on either side. my middle like sags and it hurts on the side where I am laying and on the other side /top part where it is overly indented.

Is that a thing?

And how do I sleep?

I have tried laying on blankets, a hoodie, pillows and so many pillows. Including pregnancy ones. Nothing has helped.

I've tried with and without a knee pillow.

I feel like I have been trying science experiments to try to figure out how to sleep.

I found this paper today and it didn’t look like it had been shared here yet (my apologies if I missed it!) I thought it was pretty interesting.

Hello,
I work for a healthcare company in the UK. I am currently being investigated for hEDS, POTS, endocrine issues and PMOS. I have scored 7 on the Beighton scale and have had MRI’s, just waiting for reports and referrals. I also have significant MH issues including ADHD and bipolar and am diagnosed with inappropriate sinus tachycardia. I am looking for advice as I have a stage 4 sickness review. This is basically HR deciding if I’m fit for my role and if they will continue to employ me as I have had too many sickness absences. Has anyone else been through something similar?
I can’t afford to loose my job.
If you’ve been through something similar what advice do you have?
I have been to occupational health and they have deemed me fit for work but the queried diagnosis’ are new.
Thank you!

All of the medical equipment I need is so so expensive. Even the cheapest options. Insurance is being a pain in the ass about it too and not sending me any reimbursement forms.

My condition is progressing from mild to moderate somewhat quickly. I can't physically write anymore, I can barely read, and I'm in constant pain to the point where I have insomnia due to it. I need to make several purchases for myself; new mobility aids (I can't use my cane anymore due to my weak hands) and braces are at the top of the list. Not to mention travel costs for my doctor's appointments (I can't drive, have to take train and bus) and the cost of my MMJ which is the only pain relief I have, and I have been out of for months.

Does anybody know how to make any amount of money, no matter how small, while being disabled?? I'm also a full time student which narrows down my options even more. I'm genuinely lost. I'm losing my mind.

I went to my primary care yesterday. I have been psyching myself up weeks with my therapist to actually talk to my doctor about my suspicion of a connective tissue and/or auto immune disorder. I was just hoping for some testing and/or referrals, at least a starting point

For years my symptoms weren't too bad and/or could more easily be explained by anxiety, which I do have, but it's been worse lately. I haven't wanted to bring things up with my primary because of other possible explanations and fears of being dismissed...

So of course yesterday I was super anxious going into my appointment, a 3 month follow up to ongoing issues (psychiatric, thyroid, endometriosis, etc) and finally tried to tell them everything, after ensuring they had time to go into it. They said they "had all the time I needed"

First I saw a nurse practitioner student who seemed skeptical but was polite. Then my regular provider came in

The first thing she said was "I don't think there's anything physically wrong with you" and "mental health can cause physical symptoms and we need to lose the stigma around that!" Honestly, I burst into tears, it was what I'd dreaded for years! And I know mental health can affect physical health, but shouldn't physical causes be ruled out before assuming it's 100% psychiatric!?

She quickly assured me that she would run the tests anyway (so why declare I'm fine already!?) but was also adjusting my ADHD med and adding a beta blocker for anxiety. I was fine with trying the med changes, it's nothing drastic and my anxiety has been worse due to my physical health issues and transferring colleges next semester

Most of the tests came back normal - lyme, some inflammation marker, and ra factor. But ana has not come back and now I feel like so much rests on this. If it's negative, it's back to the drawing board. Why do my joints pop and then cause numbness? Why do I feel so achy at the end of every night? Why do I still feel exhausted after a long night's sleep? Why can I never feel comfortable when sitting/lying down without 10+ pillows around me?

I'm sure some of this could be anxiety, and I am sure that anxiety is worsening the symptoms. But Ive been working in therapy for 2 years and my therapist is very happy with my progress, even going down to biweekly appointments! She encouraged me to get my concerns looked at, because these symptoms are ruining my life and are just getting worse while anxiety has (overall) been better

So now I'm here venting to people who understand the struggles. Thanks for reading this far if you have, I know this is long! Id love to hear about your experiences, and advice, if you feel like sharing!

I’m diagnosed with HSD and my doctor and physical therapist suspect hEDS, I have daily hip flexor and sciatic pain on both sides and can’t figure out how to manage the pain very well. Over the counter pain medications don’t help much and consistently changing posture, standing, taking breaks from my desk doesn’t really help either…

I’ve been in the process of trying to get a motorized wheelchair for 5, almost 6, months. The reason there has been such a huge hold up is the fighting with doctors, I’ve had to switch my care provider 3 different times due to stone walling my calls and refusal of service simply cause they believed I didn’t need it.
In the span of a singular night I had a flair up so bad that I was immobilized for months. Moving hurt and I had to go to the hospital so many times in the span of 2 months that we ended up meeting our yearly out of pocket budget.
I have regained some stability, but I still am unable to walk from my bed to my car or even to the bathroom and back without feeling it in something.
My recent problem has come to a head was when I switched to my recent care provider. He sounded sympathetic and wrote me an in-depth diagnosis document stating that I needed mobility aid (specifically an electric wheelchair) and a lot of physical therapy. During that same appointment he said he would send in a prior authorization for the wheelchair as soon as he can. That was 2 months ago, insurance has had no attempts of a prior authorization being sent in and all I’ve been getting is “We’ll have to ask the doctor and call you back” with absolutely no call back.
I’ve already spoke to my insurance and they have currently opened an investigation on why this process is taking so long with absolutely no result on my providers end. A few days after insurance opened the case I got a message saying they would send the script. They proceeded to send me a paperscript that they had scanned with the word “Electric Scooter” on it. I’m unsure how to proceed with this. The necessary actions will be taken (informing insurance and getting a new pcp) but what can I do about the wheelchair? I’m unable to work a proper job due to me being unable to walk and I’m unable to move around my school due to not having the mobility to do so. I’ve quite literally had to put my life on hold since this flair up and the lack of mobility or care Im getting is hindering it more. If anyone might have anything that might help, it would be much appreciated!