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VanillaBean98

699d

Does anybody else get nerve and muscle pain? I have always been fit and active, even after I got my diagnosis, but it seems like my POTS have progressively gotten worse over the past 2 years to the point I have severe chest pains, nerve pain in my arms, legs, and neck, and horrible muscle cramps. No medications, rest, ice, heat, or exercises are helping to heal it or even minimize the pain. Does anybody else experience this?

Top reply
    • 55isMe

      664d

      Ive had all 3. Usually one overwhelmed the other, so at any given time, it was like only having 1 or 2. Also they occurred in 2 timelines, both prior to a breast cancer. The first time, it went away with chemo, as well as migraines and Thrombocytopenia, which also all started 9 years prior. This time, we'll see what makes it go away (double mastectomy, no chemo, this time). It does seem to be lightening, or at least more tolerable. Pots is morphing into major nausea and then fatigue (from 200bpm after 5 minutes).

    • 55isMe

      664d

      Ive had all 3. Usually one overwhelmed the other, so at any given time, it was like only having 1 or 2. Also they occurred in 2 timelines, both prior to a breast cancer. The first time, it went away with chemo, as well as migraines and Thrombocytopenia, which also all started 9 years prior. This time, we'll see what makes it go away (double mastectomy, no chemo, this time). It does seem to be lightening, or at least more tolerable. Pots is morphing into major nausea and then fatigue (from 200bpm after 5 minutes).

    • Ellith

      689d

      Yes, I have both POTS and Fibromyalgia, there's a few studies that show a link between the two, but POTS can cause very similar symptoms to fibro.

      • 55isMe

        664d

        @Ellith chronic fatigue too.

    • Smoores

      690d

      Yes and I was tested for both types of neuropathy and my tests were negative but it’s getting worse for me! I now have sensitivity to touch and I can’t walk barefoot without sharp stabbing pains. If I touch a rough surface it feels like tiny glass splinters. A few weeks ago I picked holes in my fingers because I was convinced I had splinters but found nothing…..So irritating

    • 55isMe

      692d

      Yes, i do. But like many people with pots, we have other conditions too. I believe in the future, they will better define how these conditions link together and what we can do to minimize or fix them. For now, stretching the muscles. Exercising them in a manner that you can. YOSUDA Under Desk Bike Pedal... https://www.amazon.com/dp/B07ZFBBD6J?ref=ppx_pop_mob_ap_share I put this in another post. Not advertising, but it simply has been a godsend to me. Sometimes im not able to use it, but i have got up to an hour of recumbent pedaling too at one point. Just even just a few revolutions is better than none.

    • Wondercell

      693d

      I have tons of pain in my neck back and legs. But I also have scoliosis beside the mast cell and the pots plus I had a giant sarcoma removed from one of my legs in 2016. Guess I don't have a chance to be pain free

    • DieselWeasel

      696d

      I have had very bad pots for years and this is not a symptom I've ever experienced. Sorry. As others stated you may be suffering from something neurological that may connect to the pots in some way.

    • hazyeclipse

      698d

      Yes, from small fiber neuropathy. You might have it as well, something like 50% of people with pots do (and it's usually the cause in that case as well)

      • beingnotseeming

        698d

        @hazyeclipse was just gonna come say this!

    • Belugabear

      699d

      Yep, but I also have fibromyalgia! There are things that can help and plenty of potential causes besides POTS, don’t give up looking!

    • littlebug

      699d

      I do, but I have other conditions along with POTs that cause it. Have you ever looked into joint or connective tissue disorders?

    • Ryn.Beetle

      699d

      I often feel nerve pain in my arms and legs even shooting through my hands and feet and hips sometimes. I suspect a pinched nerve or two in my neck/back but I'm sure other things could be at play. I've experienced this since I was at least 7 years old. When I maintain a good sodium level it helps, but it never really goes away for me.

☝ 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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