Cidp

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    • #9944
      Anonymous
      Inactive

      Hi
      I’ve been a CIDP sufferer for about eight years and have had most of nther available treatments, but to no effect. The last six months have been a struggle and it’s getting worse. The question I’m asking is does anybody have pains in the thigh muscle and groin area?

    • #101447
      Anonymous
      Inactive

      Hi Bryn,

      My husband has CIDP-MADSAM and he gets IVIG every 3 weeks since 2007. He gets tight muscles in his thighs. He doesn’t describe it as pain, but uncomfortably tight muscles. Usually it happens if he over does the exercise.

      I have MS and get tight muscles and spasms too especially with over doing it. Rest helps both of us to re-group. But we do both try to exercise regularly. Tomorrow we are going to try the Silver Hair Ice Skating program at the local rec. centre. Neither of us has skated in years and both of us are pretty uncoordinated so it should be an experience.
      Laurel

    • #101459
      Anonymous
      Inactive

      Hi Laurel
      Thanks for the reply, Iv’e tried a two month course of steroids, and a week in
      hospital on immunoglopulin but it didn’t help me I’m afraid

    • #101463
      Anonymous
      Inactive

      [QUOTE=Bryn Jones]Hi
      I’ve been a CIDP sufferer for about eight years and have had most of nther available treatments, but to no effect. The last six months have been a struggle and it’s getting worse. The question I’m asking is does anybody have pains in the thigh muscle and groin area?[/QUOTE]
      Last week I had what felt like electical shocks in the inner thigh very near the groin. I have had this several times before but never above the knee. It is extremely painful. The pain is pulsating and occurs about every minute. I now have a medication to take when it starts. This calms it down in about four hours. Before the medicine it would continue for about 24 hours. I had my third treatment of IVIG this week. I hope it will also help.

    • #101470
      GAT
      Member

      Almost all of my pain is around my bladder and stomach. I have had pain for two and a half years. I am convinced it is nerve damage in the lining mostly where a hernia would be. The pain is always there. Between Neurotin and Tramidal I get by OK. Because it was not the normal thing that normal people with CIDP it took months and eleven doctors to finally figure it out. Keep going until you find a doctor who will get the best treatment and the best pain management without too much pain medicine

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