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Chronicdecay

429d

Has anyone found any useful treatments of any kind to help with peripheral neuropathy? I had an EMG that came back normal. They're still thinking it could be small fiber neuropathy. I have an MRI scheduled, and there'll be a biopsy sometime after that. But I am in constant pain, which spikes to severe with pretty much any movement. Full legs, buttocks. Feet have been spared so far. But it's been spreading and getting worse for the last year. Gabapentin and ibuprofen are useless. I react badly to most new meds I try. Nortriptyline, starting with a super low dose is next to try. I don't have high hopes.

Top reply
    • Jada2001

      70d

      @Chronicdecay you know what I had to go to a Neurologist to get help, the Rheumatologist I went and saw was a female as well and she was absolutely no help whatsoever basically even said I didn't have neuropathy or Fibromyalgia in other words she said it was all in my head 🤷🏼‍♀️

    • Jada2001

      70d

      ❤️

    • Chronicdecay

      73d

      I had an EMG done which showed no neuropathy. They mentioned small fiber neuropathy, and that a biopsy would confirm that. Then ended up saying they were sure it wasn't small fiber neuropathy, and refused to order the biopsy. He said something about it not being worth the cost, he was positive that wasn't it. Medicaid completely covers it, so that was bs. And when I tried to see a female neurologist, they refused. Said I could go to Dartmouth Hitchcock (3 - 4 hours away) or New York City (minimum 6 hours away, depending on where in the city) if I wanted a second opinion. And my "not neuropathy" has gotten magnitudes worse since. Depending on what I'm trying to do is anywhere from wow that hurts to excruciating. And the pain is constant. It's also been spreading further. And now no local doctor will even see me for it. Even tried to make an appointment with a new female rheumatologist, (for my fibro and hEDS) and they refused, assuming I was trying to see them for my legs, which they already told me they can't help with. So basically, I'm screwed.

      • Jada2001

        70d

        @Chronicdecay you know what I had to go to a Neurologist to get help, the Rheumatologist I went and saw was a female as well and she was absolutely no help whatsoever basically even said I didn't have neuropathy or Fibromyalgia in other words she said it was all in my head 🤷🏼‍♀️

    • GaiusA

      352d

      I was diagnosed with small fiber neuropathy recently after a positive biopsy. I've tried a bunch of pills from muscle relaxers to the anti-depressants with neuropathic benefits and gabapentin, and none have helped. My doctor wants to try immunoglobulin infusions (IgIV), but it's been a nightmare trying to get insurance to cover it. I hope you're able to find something that helps. Neuropathy tends to be very difficult to treat, and most commonly, the best treatment is to treat the underlying illness (if one can be found, which it often can't).

    • Chronicdecay

      353d

      Update - unsurprisingly, the MRI came back clear. The next step is a biopsy of my leg, looking for small fiber neuropathy. Since no one from neurology contacted me after the MRI, I guess I'll have to track them done to get it scheduled. I was already told that a diagnosis won't really change my treatment. But adding another diagnosis to list, especially one that has an actual test to back it up might help with getting disability.

    • Kehena

      427d

      👍

    • Soskae

      428d

      I had a medical assistant tell me about electrostimulation as a pain solution but when I asked the doctor about it he refused it as a treatment and preferred I stayed on opioids as a 20 year old my whole life. I tried a few rounds of spinal injections and they helped for a day or two instead of weeks or months like they were supposed to and I was awake during the procedure so I got even more ptsd from that experience not to mention each injection was $500 after insurance. There is honestly not enough effort put into pain management with patients. They just throw opioids at us and tell us to get over it. All of the funding goes to curing disease not helping those who are already suffering.

      • Onward

        417d

        @Soskae I have a ‘non-painful’ case of peripheral neuropathy in feet and progressing to legs. I’ve found that some stretching and quieting like meditation helps a bit. Neurologist suggested I try gabapentin. Using a 200mg dose once a day. Does nothing for my neuropathy but seems to help my sleep which helps relieve that symptom of pain. Having had epidural injections for lower back pain and some opioids, I didn’t find them very helpful in my case. I think more can be done with self-care either with or without drugs. I’m getting the feeling that not much is known about neuropathy or at least some types of it. I’m sorry you’re in pain.

        • Soskae

          416d

          @Onward stretching, heat therapy and massage so far have been the best for me.

    • Kehena

      428d

      None of my doctors have ever mentioned any kind of treatment for neuropathy🤷‍♀️

      • izz

        428d

        @Kehena me neither. i originally went to a chiropractor bc of my back but then i found the place i go to can help with my nerves. you kind of have to explore different treatments to see what works for you (as long as they are safe of course)

    • izz

      428d

      My doctors think i have Peripheral Neuropathy but none of my test came back with any results. I see a chiropractor and deep tissue specialist atleast once a week and it does wonders.

      • Kingswife

        353d

        @izz Have you done a Nerve conduction study?

☝ 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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