CIDP and Exercise

    • Anonymous
      June 29, 2006 at 7:24 pm

      I had read on the old posts that a number of the posters were exercising. I am doing a free week at a fitness center where I am able to use the hydraulic machines at my speed (slow) during off hours. I will soon need to join if I am to continue. Could those of you who exercise let me know how you balance the further damage to nerves that can occur with the importance of keeping the muscles going? As of now, I am affected in my feet and legs below the knees.
      Early on my neuro would not let me do therapy. During this last year I got a referral for very minimal PT, then aqua-therapy. Medicare reimbursement has run out on the latter. Exercising does raise my spirits in general. Right now I do few repetitions but I’m wondering whether I can do more. I would appreciate your feedback.


    • Anonymous
      June 29, 2006 at 11:35 pm

      I might be an expert on this, so I’ll try to answer. If you still have good days and bad days (progressing or having relapse/remittence), PT or exercising will MAINTAIN the muscles, but will not bring about improvements until CIDP is brought under control. I am no longer progressing and I am at a point where I can benefit from exercise. I went through about five years of PT off and on, I have found that I no longer benefit from the PT. If I am going to improve anymore then what I am, it HAS to come from self motivation, so I have a 36″ mini trampoline to help me with my balance. Since my home has no stairs, I make steps out of my aerobic steppers, the motivation has to come from me now. I tried going to a gym and worked with a personal trainer, but “I” was pushing myself beyond my abilities and it exhausted me. I should have limited the gym to just three months, I did good with that. I am trying to rebuild muscle strength and come up from a wheelchair. If you can walk into the gym and use the machines yourself, you’ll probably do better then me. Don’t overdue it though and be careful of the length of time a contract is for.

    • Anonymous
      June 30, 2006 at 4:41 pm

      I’am on my second round of PT. The first time was not good for me as the therapist didn’t have a clue about CIDP. This time I found a Psiatrist(Physicial Medicine and Rehabiliation) who knows what I’m going through and he is monitoring the the PT. He has educated the PT about CIDP, and we are working together. My biggest issue is not to overdue my excercises. When I do, I know it the next day. God bless my insurance.

    • Anonymous
      July 2, 2006 at 12:02 am

      I have learned long and hard about the different kinds of PT’s.
      Some have no clue with chronic pain, no clue with clients on pain meds, or just out of PT school-run from those folks.
      Some are into major exercising/weight machines-causing me not to be able to walk and in worse pain.
      You can ask to change your PT to someone else.
      I have found that walking is the best for me. I go outside and see the trees. If weather not the best I go to nearby church that has free inside track.Stretching is great-try to know your limits for fatigue and over doing it.
      Some days are best spent on the sofa-listen to your body.

    • Anonymous
      July 3, 2006 at 2:53 am

      Hi I am a chronic relapser and I have long periods of being “normal” for me.
      I have lost some function eg foot drop etc. Exercise makes me fell good – well usually it does if I am relapsing not being able to do stuff really gets me down. It also keeps me tuned into small changes with my strength fatigue levels etc
      I like yoga for the stretching, and meditation – I aquajog once a week – wear a flotation aid and run around the diving pool – boring as heck but helps get the heart rate up – I go to the gym twice a week(30min sessions) and work with a trainer who has learnt about CIDP – totally fascinates him about how one week I can do weights and row on the rowing machine and the next totally Kna***ckered after a couple of repeats. Those times I have to chose gym and not do anything much for that day and possible the next or give it a miss. The gym is really good and lets me pay as I go so it is no problem to miss a session if doing the vacuuming is more important – not that that happens alot:D If I cant do much at the gym on my ‘off’ days trainer usually stretches me out.
      There is a fine line between doing just enough and over doing it and I think that I have got reasonably good at listening to my body. I was diagnosed 1996.
      We all are unique and we have to find out what works for us as individuals
      I believe in the use or loss it

    • July 3, 2006 at 9:03 am

      I was fortunate enough to have a PT who had worked with patients with nerve damage so she was very familar with GBS and patients’ limits. She began rebuilding the muscles that were not affected such as my quads and upper arms. This resulted in a major change in my gait and ability to lift my infant. By building up my quads, I was able to walk a bit better.
      I did yoga myself and found it beneficial in working with my balance. Now keep in mind I am no gymnast now, I have definetly seen an improvement. I used to take steps when trying to stand still (I was trying to get my balance) where as now I can stand still without wobbling around so much.
      Pool therapy was a godsend for me but the PT I had for that had her mind everywhere but on her patient. I am currently doing a parent/tot swim lesson and love the added support the water gives me. No one notices my gait!!

    • Anonymous
      July 3, 2006 at 10:34 am

      I am fairly limited in the amount of exercise that I can do, due to being left with a fair amount of risiduals. I walk with AFOs for foot drop & take a cane with when I leave the house. But at least I have been stable for over two years now with my CIDP, & so I know what I have to work with. I do have a cleaning woman come every two weeks for the heavier cleaning, but I do the every day stuff like making my bed, dishes, cooking, laundry, etc.

      What I have done for the past year is go to water aerobics twice a week, something that I really enjoy & I know is good for my body. In general, I know that I only have so much energy each day & have to really pick my battles. If I decide to go grocery shopping today, I might not make it to the 4th of July parade tonight. Trying to sleep in & even getting an hour of rest or sleep during the day really helps. I know now that more exercise will not make me stronger, it will only wear me out…

    • Anonymous
      July 3, 2006 at 2:32 pm

      When I had my worst years, I used my stationary bike, with no resistance on the pedals, and “biked away” as fast as I could 5 kilometers. It took around 10 minutes, and I worked up a sweat. This was good for my heart and blood-circulation, and of course also for my leg-muscles, without irritating my nerves. My neurologist told me that movement was important, but no heavy stuff. Now I’m well (steady!) enough on my feet, so as often as possible I go for walks. Not so fast, but I feel very refreshed and happy with my accomplishment every time. The bike has become a”silent by-stander”, for better or worse.
      If I’d had a swimming-pool nearby, I’d spent a lot of time in the water – hope the sea has become comfortably warm when we get back to the island next week!

    • Anonymous
      July 3, 2006 at 6:03 pm

      When I was first released by my neuro to get some PT, I went only once and saw that there was no pool and no “fun-looking” equipment… With what my insurance would pay (I don’t rememeber the amount now) I found that for $10 a month more, I could sign up for the athletic club… I went in, was assigned to a trainer who helped me pick equipment that I could have some sucess with… I liked the bike and really anything that I could sit down to do… I also walk with my cane around the track…

      Then I began to feel the stress from teachng school as more and more seemed to be expected of me and I was too exhausted at the end of full day to go to the gym, but I kept up my payments and got some consolation from having the scanner pass on my keychain… I was still a “member”…

      Now that school is out (and I have put in for a disability retirement) I find that I have enough energy to go and stay, ususally about an hour, doing whatever is on my “list” that I feel like doing… There is a pool, but it is pretty crowded now so I may wait until this fall to try that… They have classes in Yoga, etc. but I think I need to get my confidence built up a bit on the machines and with walking before trying any…

      Best of luck to you in whatever you decide…

    • Anonymous
      July 5, 2006 at 9:26 am

      what kind of exercises do you do in the pool ? has anybody ever put on ankle weights or anything like that. Is climbing stairs a good thing for the legs?It seems like I have a weak trunk I see and feel myself dragging my legs alot .What are good exercises for this?
      Thanks for any info