Physical therapy

    • March 29, 2017 at 4:41 pm

      Has anyone found a physical therapist who actually knows how to treat neuropathy? My neurologist is going to try getting me together with a rehabilitation specialist at a hospital where he practices, but he agrees with me that most PTs know next to nothing about the special needs of CIDP patients and might do more harm than good. I just want to stop muscle wasting while I’m waiting to see if my nerves will heal and resume supporting the muscles. I have about 20% nerve function in one leg and 33 in the other, yet I can still walk (stagger) around with a cane, although I’m utterly exhausted after 10 stepa. I need a therapist’s help.

    • March 29, 2017 at 5:35 pm

      It seems there are only a handful of therapists specializing in CIDP patient care. This is the one I use and was referred to me through a center of excellence (Cedars-Sinai in LA):

    • GH
      March 29, 2017 at 6:15 pm

      A physical therapist does not treat neuropathy, she treats the muscle weakness and contraction which is caused by the neuropathy. My therapists were, for the most part, very good at dealing with my condition even though I was an unusual case. I referred one group of therapists to the booklet for therapists available on this site when I thought they needed the information in it.

    • March 29, 2017 at 10:22 pm

      The last therapist I saw, right before my first appointment with my neurologist, was dismayed that my pain doctor was sending to me to a neuro to figure out what was going on. She warned me to stay away from neurologists, who would try to convince me that I had a lot of problems I didn’t have. When I told her I had an appointment the next day, she said, “Well, you have to cancel that appointment.” I haven’t been back to her since. The best PT experience I’ve ever had was with a therapist who had special training in treating joint replacement patients. I worked with her for 4 weeks before my knee surgery to strengthen the muscles supporting the knee, then started again (with a totally different kind of therapy) two days after I got out of the hospital. I sailed through rehab and was cleared to drive three weeks after surgery (and it was my right knee that was replaced). I’d like a therapist who knows neuropathy the way that therapist knew joint replacements.

    • March 30, 2017 at 3:17 am

      BTW, I didn’t mean to imply there’s no neurological rehab available in the DC area, where I live. There’s plenty, of course, but all the centers concentrate on stroke victims, amputees, etc. — people who have suffered physical trauma. I’m going to call all those near me and question them about treatment of neuropathy-induced problems. My fear is that they may all say sure, we treat that, when they actually have no one on staff with special training.

    • GH
      March 30, 2017 at 6:35 pm

      Any therapist who would suggest that you not see a neurologist and interfere to the extent that yours did does not sound like a legitimate PT to me. What were her credentials, exactly?

      All of my PTs (I had several) worked well with my neurologists (I had two).

    • March 30, 2017 at 10:35 pm

      She is well-credentialed and works in a respected therapy center I’ve had other therapists who expressed negative personal opinions about specific doctors or medical apecialties. This one also told me I should leave my primary soctor, and she urged me to go to a soctor she recommended. What really irked me was her ordering me to cancel my appointment with the meurologist. She went over the line in several ways. As I said, I haven’t been back to her.

    • B
      March 30, 2017 at 11:42 pm

      I found a PT practice near me that specializes in neuro patients (MS, Parkinsons, stroke, etc.). At least they knew what CIDP is without having to google it. It seems that the PT regimen would be similar to MS — maybe call your local MS Society chapter and see who they recommend for PT?

    • May 1, 2017 at 9:46 pm

      We recently had a chapter meeting in Houston and the guest speaker was a physical therapist. She was very informed about cidp and said their therapists get training for it. I talked to her briefly after the meeting and told her my neuro thought I did not need it and I would be wasting my money. She said they would do an evaluation on me and maybe send me home with things I can do on my own. Our local neighborhood pools will open soon and I assume water exercises would be good and less stressful on the legs. Would be curious what others do in their therapy. My biggest issue 5 months into the disease is my sore thighs, where my cidp originated. The soreness comes and goes but I have more bad days than good. I do the simple cidp exercises while in bed that I found online, mainly leg lifts, knees to chest, ankle rolls. How do therapists deal with muscle shrinkage? Thanks for any tips. Jeff

    • GH
      May 2, 2017 at 11:42 am

      Fellow, therapists deal with muscle shrinkage by stretching them over a long period of therapy. It can’t be rushed. This can be painful and is the reason some people call them “physical terrorists,” but it need not be that bad. I had an excellent PT. When I entered my final in-patient rehab unit, I was unable to fully extend my legs, i.e. to put my leg completely flat in a supine position without support at the knee. This was due to muscle contraction. The PT corrects this by holding the leg up up and forcing it to straighten. The key is to do it slowly and carefully and stretch it just enough so that the pain is tolerable. Then it is held in that position for some period of time. The procedure is repeated every day until the muscle is back where it should be. It probably took about three weeks for my legs to get stretched out. It can’t be rushed.

      A PT who does this too quickly without enough attention to the amount of stretching, might say “it’s supposed to hurt.” It is, but a PT who hurts the patient more than necessary is just not very good at it.