CIDP, feet, and weight

    • July 23, 2014 at 10:23 pm

      I think this is my first post. I was diagnosed with GBS in November 2012. In January 2013, after relapsing, that diagnosis changed to CIDP. Since then I was in and out of hospitals and rehab and since April 2013 I was on monthly 5 day treatments of IVIG. I have been out of hospitals since Oct 2013. Today (July 2014) I’m very happy to say that I have improved tremendously, and my doctors have reduced my monthly treatments to 3 consecutive days a month. My hands have almost normal feeling although my feet are still horribly uncomfortable and I styill have the girdling around the waist.

      I have been in a wheelchair for more than a year and have gained weight. I am beginning to walk with a walker and am starting to use a cane. I think part of the weight gain is the Neurontin. I also know that part of it has been lack of exercise. Has anyone had experience with a dietician specifically for CIDP? Also what about the feet? This is probably a stupid question, but could weight loss help my feet feel better?

      Thank you! And good wishes to all.

    • GH
      July 24, 2014 at 1:51 am

      Welcome to the forum! I was also first diagnosed with GBS, later changed to CIDP. I have been out of the hospital for three and one-half years and my feet still hurt. Some residuals take a very long time to go away and some may be permanent. I just live with uncomfortable feet.

      The main thing is that you are getting leg strength back. Use your legs every day, as you are able, and believe that you will be able to walk without even a cane some day.

      I lost a lot of weight in the hospital but started to put it back on quickly after I got home. Part of it was the inability to walk for exercise but not much, because I lost the weight when I was immobile. The main thing is that on my own I can eat whatever I want and as much as I like, whereas in the hospital my meals were more limited. My appetite wasn’t good in the hospital, either. I was technically obese before getting ill and decided, after losing all that weight, that I didn’t want to go back. So I have become much more disciplined about my diet now. I don’t use a dietician, I just apply some simple rules: first, eliminate added sugar in all its forms, as nearly as pissibly. Second, reduce intake of simple carbs and especially wheat. Third, don’t eat more than you need. Fourth, if you drink alcohol, reduce it to a modest level.

      I don’t know whether Neurontin is a factor. I don’t take it. What does it say in the information sheet?

      I don’t think losing weight will help much, except in one way. My feet hurt more the longer I am on them. I then have to get the weight off my feet for a time. I expect this effect would be more pronounced with added weight. But the funny feeling and pain are neuropathic. The only thing that will cure these sensations is nerve healing, which proceeds at an extremely sliw pace, if at all.