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Mysticaluv

427d

Question/rant: I was diagnosed with hEDS but after a recent injury doctor's arnt sure and neither is my family. I don't know what's normal pain and what's not. my main question is, I don't even know where to begin to look for answers or if anyone experiences something similar to this. I call them flare ups and it's gotten to the point where I'm struggling mentally because of them. it's almost a bone deep pain throughout almost my entire body. my ribs, legs, arms, even can feel it in my toes when it's bad. How long it will last ill never know. some last a couple hours where some last for over a day(itll get better but not good). the pain and fatigue make it hard to even move at it's worst, sitting up is painful. these days arnt common but they happen. I'm working on maybe doing some more tests and setting up another appt with my doctor. it's just frustrating because I feel like I'm deteriorating and Noone can see it and I feel like I'm just getting worse. even if it's not good I just want some form of an answer. sidenote: these can happen randomly, be it weather or overdoing it with my body. this one was cause by me overdoing it. was trying to help out and such.

Top reply
    • Gabby211

      106d

      This sounds familiar, do you have what feels like nerve pain, shocking sharp pain by any chance ?

    • Gabby211

      106d

      This sounds familiar, do you have what feels like nerve pain, shocking sharp pain by any chance ?

    • FreyaB

      427d

      Hey, I have fibromyalgia and before I was diagnosed I actually ended up googleing what I thought it could be (which was fibro or eds). I still could have fibro and am looking into that but what I can suggest is looking into fibro too cos it's kind of an umbrella term for lots of symptoms. Hope this helps. If not you can talk to me anytime!

      • Quari

        427d

        @FreyaB I agree with this. It can always be hEDS AND fibromyalgia. Definitely look into getting fibro checked out. It is known to be difficult to diagnose, so be prepared ❤️

        • Mysticaluv

          426d

          @Quari thank you both, I'll definitely check it out

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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It's important to consult with your doctor and possibly seek a second opinion from a specialist experienced in hEDS. They can help determine the cause of your flare-ups and recommend appropriate management strategies. It's also helpful to connect with others who have similar experiences, such as through online forums or support groups.

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