u/360slamdunk

Hi, I currently have to change careers and am wondering how viable the I.T. field is for someone like me. I can't stand for too long and I have to use voice dictation for most typing inputs. I can navigate a computer and the Internet just fine with a mouse and keyboard but when typing anything more than a few sentences I usually have to switch to voice dictation due nerve issues in my hands and sometimes have to take breaks from the keyboard all together if the pain in my hands gets too bad .

I was going to aim for help desk. Job in a windows environment with a accomodations basically. Is this realistic? Any advice appreciated, thanks in advance

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u/360slamdunk — 7 days ago

I’ve been struggling with something for a while and I’m curious whether anyone else with hEDS relates to this presentation.

I was diagnosed clinically with hEDS about 12 years ago after a sudden onset of overuse injuries in my wrists, fingers, hips. While I do have hypermobility and occasional subluxations, those are minor compared to my main issue: I develop chronic tendinosis extremely easily, Even in joints that I have no hypermobility in.

My threshold for overuse is exceptionally low. Relatively normal activity can lead to tendon injuries that last for years, or are permanent, and can develop anywhere. They are very debilitating and have taken away a lot of what I used to do in life and limit my access to things people normally do. I can't write or type well, I can't run, I can't stand, sit, or walk for very long, ETC.

For anyone unfamiliar, tendinosis is chronic tendon degeneration caused by repeated strain and failed healing over time, rather than a short-term inflammatory injury. The tendon’s collagen structure becomes disorganized and weakened, reducing its load tolerance and endurance significantly. For me, these injuries don’t improve much with rest and instead require very careful, long term rehabilitation to recover. Though some haven't really recovered at all.

So for me, the hallmark of whatever is going on feels more like fragility and an inability to heal, more than laxity.

The doctor who diagnosed me told me hypermobility disorders were probably somewhat misnamed, and that fragility was likely the deeper issue. But when I read hEDS communities and resources today, I mostly see discussion centered around dislocations, instability, POTS, MCAS, ME/CFS, IBS, and brain fog — all of which I don’t have or just don’t experience strongly, maybe?

Because of that, I often feel like my presentation isn’t very represented in the community, and that makes me genuinely wonder:

  • Is this a recognized but less common hEDS presentation?
  • Are there others here whose main issue is tendon fragility/overuse injury rather than instability?
  • Or does this sound atypical even within hEDS?

I’d really appreciate hearing from anyone with similar experiences.

Also to be clear, I understand we are all different and that there is no "one true hEDS" presentation. I just don't see fragility mentioned when it comes to hEDS and I honestly don't even mention EDS to people when I'm explaining my condition because I fear if anyone goes to google it they will get the wrong idea about me

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u/360slamdunk — 10 days ago