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stxrberrym00n

440d

i have not been officially diagnosed with erythromelalgia but i have every symptom of it. its been going on for years and has recently in the past months gotten much worse. it has started spreading to other parts of my body that usually do not flare up and have problems. it also has become more severe and painful, as if im putting boiling water on whatever part of my body is flaring up. does anyone have tips or medicine/supplements they could suggest?

Top reply
    • HisWillNotMine

      417d

      I would print something off to bring to your appt that explains why a skin punch biopsy is necessary. It's the ONLY test that will show SFN. I had an EMG done with needles all the way up/down my right side, including on my feet, and it didn't show anything. I knew I didn't have large fiber neuropathy. I would also look into the connection with POTS. I'm in a really great group on FB. Erythromelalgia- Medicine/Treatments, Information, and Support. Good luck. I hope you find some relief

    • HisWillNotMine

      417d

      I would print something off to bring to your appt that explains why a skin punch biopsy is necessary. It's the ONLY test that will show SFN. I had an EMG done with needles all the way up/down my right side, including on my feet, and it didn't show anything. I knew I didn't have large fiber neuropathy. I would also look into the connection with POTS. I'm in a really great group on FB. Erythromelalgia- Medicine/Treatments, Information, and Support. Good luck. I hope you find some relief

    • HisWillNotMine

      429d

      Do you know what is causing your EM? Do you have small fiber neuropathy?

      • VituLina

        426d

        @HisWillNotMine that’s what I have with erythromelalgia and it was getting worse in a similar way! Luckily after confirmation, the meds have helped a ton

      • stxrberrym00n

        428d

        @HisWillNotMine i have no idea what is causing it. it just kind of happened one day and progressively got worse. my hands, feet, knees, face, and ears all are affected by it. i’m getting a neuropathy test in june on my hands, but that doesn’t explain why multiple other parts of my body have it

        • HisWillNotMine

          419d

          @stxrberrym00n I just looked at your profile and wanted to add that EM is very often secondary to POTS and can also be secondary to EDS.

        • HisWillNotMine

          419d

          @stxrberrym00n sorry I'm just now seeing this. I commented on your other post. Do you know which Neuropathy test they are giving you? EM is highly connected to small fiber neuropathy, however many doctors test for large fiber neuropathy and that won't show SFN. The test for LFN are EMG, nerve conduction study, etc. The test for SFN is a skin punch biopsy. Without the skin punch biopsy, it likely won't show anything. It's possible to have EM without SFN. Your PCP should refer you to a Rheumatologist to rule out auto immune diseases and order lab to rule out Myeloproliferative diseases like Polycythemia Vera, etc.

☝ 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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