Suggestions for help with nerve pain

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    • #117469
      Tom Crowley
      Participant

      My sister began to show signs of CIDP in early November. She had a flu shot 10/24 and a GI infection 11/20. On 12/25 she had deteriorated to a walker with three assists with extreme pain in hands and weakness in legs. Her primary care doctor had been testing her for sciatica. After 3 weeks in hospital and 3 weeks in rehab she is home. She has had 7 doses of IVIG and is set for more soon. She is having issues sleeping due to the nerve pain in hands and tightness/pain in legs. She is taking lyrica and cbd oil. She drinks caffeine and eats keto style. She can’t sleep and complains of the pain. She is doing PT and OT but gets very fatigued. Still on a walker and very weak. Any suggestions on how to address the nerve pain? She is open to alternative ideas. Please share. Thank you

    • #117471
      Mike
      Participant

      Sorry to hear about you sister’s pain and symptoms. I love, love loved coffee and caffeine before this illness and have cut way back on my caffeine intake which I think has helped with some of my neuropathic symptoms and also my autonomic symptoms. I still have some caffeine and add cinnamon instead of sugar to my coffee. Has she tried any topical treatments? I have used cryoderm in the past which contains arnica and boswelia which are natural herbs. This does seem to offer some temporary relief. I haven’t tried any cbd oil but have used topical cbd in the past. Before I was sick as I was a runner. I didn’t find that the topical CBD helped and was super expensive. Has she talked to her neurologist about a magnesium supplement or even warm baths with epsom salts? This might help with the leg tightness and warm baths are proven to help with sleep. Just a thought? Accupuncture seems to have helped me some as well. It doesn’t make my symptoms go away but does offer some temporary relief, and I seem to sleep really good the nights I receive the accupuncture.

    • #117477
      buckthorn
      Participant

      I’m recovering from GBS (flu shot on 9/26) rather than CIDP, but your mentioning of tightness and pain in the legs resonates. My first two weeks I had excruciating pain and tightness in my legs that kept me up all might. The doctors’ initial expectation was that it was strictly nerve pain and prescribed gabapentin, which did nothing. After sitting the doctors down and describing the pain in detail, they experimented with some combos that targeted the muscles until finally something worked. The key for me was flexeril (cyclobenzaprine, a muscle relaxant); they also gave me baclofen (antispasmodic). So it might be worth getting the doctors to try something along these lines.

      I hope this helps and that you find relief soon!

    • #117478
      Jim-LA
      Moderator

      Some additional information about pain and weakness can be found in the following discussion threads:

      newly-diagnosed — night pain

      Pain Management HELP!

    • #117495
      Dana
      Participant

      Before I was diagnosed, I had the same problems with sleep.

      The only thing I found to work on the nerve pain in my legs and lower torso was Lidocaine, which I found out quickly needs to be used very sparingly due to the effects elsewhere after it’s absorbed.

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