?’s about feet

    • Anonymous
      April 26, 2010 at 12:39 pm

      Hi everyone, i’m kinda new to the fourm, i’v been reading alot of the posts. I have some ?s that im having trouble getting answers to. I have cidp and really have come along way,from a wheelchair in 08 to currently walking unassited,when i asked my last neou. about physical the. he said he felt it was just fancy exercise.I went to the new nero. last week all he talked about was my history and we didnt get any farther, so everything will stay the same for the next 3 months. Im 46 and i get ivig 30 grams aday for 5 days every 3 months, its been the same from the beginning. What im trying to figure out is what i need to do to stretch my feet so they dont feel so tight inside,and gain some indurance. Im pretty good with short distances, but after a little bit the nerve pain in the ball of my feet will sit me down.Also woundering if anyones on a special diet that seems to help,or vita. or minerals. sorry for the long post wish i would have found this forum a couple of years ago. thanks starr

    • Anonymous
      April 26, 2010 at 1:01 pm

      Starr, welcome to the group 😀

      I have CIDP and my feet are very bad.

      I can’t walk long distances either.

      I get the same sensations as you do.

      I also get shooting pains that nearly drop me to the ground.

      I find that overdoing it makes the pain worse!

      I found that wearing a running show all day helps.

      I also lay on my couch with my legs and feet going up the back of the couch to keep them elevated, seems to help with pain and swelling.

      I got myself a small scooter so when I go shopping I can enjoy myself more.

      At night I use a warm rice bag to help relax the feet and it also helps with the pain.

      As for IVIG I was once on a three month schedule and Dawn pointed out the shelf life of IVIG is about 3 weeks.

      I found I was in more and more pain as it got closer to IVIG day.

      With Dawns information in hand I approached my doctor and got switched to a monthly schedule.

      I get 90gms every month.

      For the most part I find I am doing better and not in as much pain.

      Hope that helps a little,
      more people can give you more ideas.

      Good luck
      Rhonda from Canada

    • Anonymous
      April 26, 2010 at 3:26 pm

      I going to second what Ronda said about the monthly IVIg. I also have a problem with long walks. You might investigate low impact aerobics or water aerobics. You will get to stretch you muscles but you will not put your body through as rigorous a workout. With CIDP the saying “no pain no gain” just is not true. If there is pain, you are doing too much and you are doing more damage than good. Welcome to our little family and never worry about asking a question. That what we are here for – to help each other

    • Anonymous
      April 26, 2010 at 4:49 pm


      My son Ryan is 21 a nd he also has CIDP, he was in a wheelchair and now he is walking due to chemo. he gets really bad craps and pain in his feet, his ankles get real tight and I have to sit and stretch his feet several times a day to help releive some of the tightness and pain. he also gets pain meds too.
      But he does do physical therapy twice a week and it helps alot with endurance and strengthening. Ryan has had PT for a year and a half. our neuro tells us every CIDPer should be doing physical Therapy or some kind of exercise. we had 1 neuro that told us PT was not necessary and we left his practice.
      Ryan also see’s a chiropracter on a weekly basis and has massage therapy once a month, he wishes it was once a week but we can’t afford it. massage and chiro help termendously. He is also watching what he eats. no junk food or processed foods. just whole foods. trying to keep his body as healthy as he can.
      hope this helps if you cant do physical therapy then at least stretch your ankles (by rotating them up and down and around in circles and stretch your legs it will help.

      Rhonda (Ryan’s mom)

    • Anonymous
      April 26, 2010 at 5:54 pm

      Thanks everyone, I guess this is just part of the process. And i want to get around like i use to so bad was hoping smeone had the magic answer. I do try to do some streching and flexing everyday. And i try to walk as much as possible. IT took this long to get to this point, maybe in the next few months the feet will lossen up. Dose evryone have trole with shoes,I do best in just my socks. Thanks again,have never really talked with anyone that even heard of cidp, or ivig for that matter.

    • Anonymous
      April 26, 2010 at 7:34 pm

      Treat your feet as IF you were a diabetic? Causes are different, but processes are the same?
      This is technical, but do read the forward and the intro—they are key to learning about what all happens due to damaged nerves….
      url-http://telemedicine.org/stamford.htm-http The part about diabetes in skin disease is what you want the good stuff on from the index…..
      Next? Exercises for feet…most PT folks other than doing leg and body/balance therapies don’t address the feet. There isn’t a lot out there on feet, per se… this is a good web site for just about all PT moves? But not all…url [url]http://www.fairview.org/healthlibrary/content/sma_index.htm[/url] url… it’s sorted out by problem? But not by building up feet! The most PT folks usually suggest is to ‘take a thick towell’ in your toes and crunch it up? I prefer the pick up or squish marbles in-between the toes-then let go. A word of warning here? Don’t do these too often at first? IF it feels good? Still don’t! Why? Because you can get some horrid awful cramps in your insteps that will make you think you have broken your feet somehow! As for stretching? The standard hands on a wall about 1-4 feet from it and do sort of push-ups against the wall w/feet flat on the floor. Do more exteme ones as you get more stable and secure in the doing. Again, start out slowly, PLEASE! The pain from overachieving is NOT worth the gains.
      I would talk to your new neuro, and also your GP? Doesn’t hurt to ASK for PT. Then the issue becomes finding GOOD PT…these days easier said than done…. A good PT listens to your problems at evaluation, then learns about your medical issues [if they don’t? Can be a problem?] Then works with YOU to do what feels like IT WORKS and is not hurting too much. Any Therapist who is too gung ho? Gets the heave ho from me! I try hard, but I also now have an idea of my ‘limits’? And if someone pushes me into an ‘unsafe’ or ‘uncomfortable’ zone for me? I am not gonna play that game! I certainly don’t want to see a PT 2x’s a week and spend the rest of my entire time ‘recovering’! I also like to get guidance about ‘things’ I can do at home to help me build up strength in-between sessions. Therabands, weights, balance discs and balls can be found on sale cheap so you can get the tools you need to do home stuff for under $100. But, you need two extra things: Copies of ‘instructions’ and ‘MOTIVATION’! W/o those last two? Not gonna go anywhere. And, they are the HARDEST things to get and do!
      Doing things at home and at therapy? Can work wonders…if done right. Why a doc thinks it doesn’t work? Well, IMHO? Is he/she from outer space?
      Gee whizz! We go from being ‘normal’ to bedridden and semi-crippled overnite…and they don’t think we need PT? Sure is cheaper than life in a wheelchair. I’ve been fighting this issue and still do, you are not alone! I hope you now have a bit of hope? Let us know…and be assertive about this…the choice is wheelchair or walk [albiet not too well or comfy?] I’ll take the walk any time! You? Hugs…