Hey! I'm having trouble getting a diagnosis right now and my symptoms (of what I and my therapist suspect of hEDS) is getting worse and worse over the course months . i was wondering if anyone had tips to slowdown the pain spread while I wait to see my PCP?

it's been a year and half since my pain started in my arms/hands and has spread down to my hip/legs. it feels like there's a bubble of air in my hip that I'm always trying to pop but it's just really painful when i try to pop my muscles to get at it or walk. i can't super walk most days unless I rest for maybe a week, then i get a good 15 minutes worth of walk time before it gets painful. i did PT and OT but it made my pain way way way worse for me, which makes me sad cause i really wanted it to work :(

i bring this up because life is very stressful when the pain keeps spreading - but not being able move, gaining weight from not moving, and being in pain all the time is honestly my main stressor right now. if anyone has any advice I would appreciate that so much!

Chronic Pain

Ehlers-Danlos Syndrome (EDS)

Joint pain

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  • kjuliannaa


    Hello lovely, so I knows hEDS you can Google diagnostic criteria and that will help. I'm not sure on how to slowdown the process. I waited to long to see a pain specialist bc my bad experience with one but I finally found one who helps. If you ever need a friend to talk to about your feelings I'm here!

  • MangoPeach


    I would look for a geneticist

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