What about exercise?
AnonymousApril 5, 2007 at 8:08 pm
It’s 12 weeks since my first symptoms, the diagnosis and IVIG treatment was 4 weeks ago. My legs are wasting away to nothing, and the feet and calves hurt a lot. I feel like I need some exercise. What does everyone else do for exercise?
PS: I have an appointment for a 2nd opinion on Tuesday. I’m still not giving up hope that I don’t have CIDP.
AnonymousApril 5, 2007 at 11:58 pm
I have CIDP and possibly a second syndrome CMT and I think exercising is something we need, but, NEVER over-do it and ALWAYS ALWAYS ALWAYS listen to your fatigue level. Like Brandy said, talk to your doctor about going to physical therapy and you could even try occupational therapy if you have a problem with hands. If you enjoy swmming, pool therapy is highly recommended. If you are a high motivator, do exercises yourself after you’ve completed physical therapy.
NEVER push yourself and over-do, ALWAYS listen to your fatigue level. I had to repeat that because it’s important.
AnonymousApril 6, 2007 at 10:48 am
Michael (got it right this time)
You are still very much in the recovery phase. Unfortunately, as I am sure you have read, it takes a long long time, so I dont feel you have to start worrying about CIDP yet. Just as Brandy said, you should most definitely be doing physical therapy, and possibly occupational therapy. This is very important for your body and will help on your road to recovery, as well as possibly how you are able to walk etc. in the furture.
AnonymousApril 8, 2007 at 12:17 am
Flexibility and toning is always safe. Strength exercises as your Doc desires.
As you lose muscle mass you will also lose flexibility as muscles shrink in size. Keep them stretched.
Light toning exercises will keep them involved, but not over tax them.
Common sense over-rules everything
AnonymousApril 8, 2007 at 4:44 pm
Hello Michael, and Welcome!
When I was in the hospital and in the ICU I asked my Doctor if he could get me someone to just move my arms and legs. I had my Son when he visited to just hold my hand straight across his palm and keep the fingers from curling under. I would also have him put on a moisturizer to help with the dry skin and put his other hand on top to give me some warmth in my hands. Don’t be afraid to ask your Doctor for what you think you are ready for or want to try. One day I did have terrible cramps in my leg and ask for rehab to come to ICU and move my leg and arms. I never had cramping after that. Everyone is different but when we find success we want to share. Hope you have some things to share that have worked for you for the next new member that come along. Remember your nerves need REST to heal and the muscles need movement or exercise to feel healthy. These two things fighting against each other will be a conflict for some time to come! Listen to your body. Like you have read before GBS also stands for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly!
AnonymousApril 8, 2007 at 8:07 pm
Thanks for the pointers. I think I’ve overdone a few times lately and was exhausted the next day. I need to find my limits. I have noticed the need for more stretching.
Tuesday I’ve got an appointment with a different neurologist for a second opinion. I plan to ask about Physical Therapy(I’m not doing this at all) and exercise. I also plan to ask about pain mangement, sleep(don’t get enough sleep because of the pain) and diet (there must be some foods that are particularly necessary for Myelin to regenerate). My wife is going with me to make sure that I don’t miss anything. Thank God for my wonderful wife!
AnonymousApril 8, 2007 at 8:11 pm
I’m assuming that your doctors have been like some of mine–a little clueless.
Until you get some physical therapy, I recommend stretching, and toning bands. Most of the stretching I did (after a physical therapist told me what to do) was simply sitting on the floor, extending my legs, taking a towel, looping it around my foot, and pulling to stretch the calf. I also got one of those calf-strechers, which you can get at most fitness/sports stores. You’re supposed to stand on them, but I would just sit with it since balance was a problem for me. The toning bands will be good for your upper body, especially if you have a hard time holding things like I did. The bands are easier to hold than weights.
If you have access to a recumbant stationary bike, I recommend it highly. That was a life-saver for me–it made me feel like I was still able to do something.
AnonymousApril 8, 2007 at 9:35 pm
I agree totally about our care givers being there for us all the time. It would have been hard to to this without them. They are truely our Advocates.
Think about making a list of things you would like to be able to do but at this time you are not able to do. No matter how great or small.
Right now you can start by doing range of motion and breathing exercises. Stretching and flexibility and range of motion will come back with a regular routine.
Personal hygiene, combing your hair, getting dresses, brushing your teeth to using any tool that you may need to repair an item is all OT.
Walking, getting out of a low chair, standing for long periods of time. Getting in and out of the bathtub or up and down stairs. Getting groceries, trying on a suit or a pair of shoes. Being able to pick up your child or being able to place something on a shelf.
Anywhere you notice a weakness, that is going to give them a good idea what kind of therapy you need. Also what you already can do.
Don’t get discourage if they start at the bottom and work up to the things you were already doing before you come down with this illness. Most important it takes times to bounce back!
Pool exercise was great at first for me rather than the floor exercises and classes like Yoga….I slowly have worked my way up to being able to do much of what I want now…..been 17 months. The distance I walk could be much better!
Working with a partner in this stuff might be great for the both of you! While being ill I actually notice my dogs muscle tone has declined!
Enjoy your Summer! 😎
…..also before I forget let us know how you are doing on the GBS exercise message board.
AnonymousApril 8, 2007 at 10:44 pm
I have had the same question about exercise. About two years ago [before I was dx with CIDP] I came home with a puppy. My wife was less that happy. I told her that that the puppy was not a dog but was an exercise machine. The puppy and I walked every day.
Slowly it got harder to complete the two miles in the morning and afternoon. We are now down to one mile in the morning. Unfortunately, it takes around 45 minutes to an hour to do the mile with the help of a cane. The dog has helped me get out of my chair and get some exercise. Hopefully I can keep doing it.
In my case the CIDP seems to very slowly to cut down on my muscle strength and sensation in my legs and arms. IGIg may have helped slow thing down but it hasn’t stopped the process.
By the way my wife always comes with me when I go to see the doctor(s). It helps if two people hear what is said and compare notes. It also helps to have a witness to verify that sometimes I walk into wall and trip over my feet.
AnonymousApril 13, 2007 at 9:08 pm
I had my 2nd opinion this week, it confirmed that my neurologist is on the rigt track. I also had my first follow up visit since my hospitalization. I’m getting better: recovering from the foot drop and getting back some feeling. I didn’t know this, but the initial IGG treatment lasts for about 6 weeks. When the IGG wears off is when they’ll diagnose either GB or CIDP by whether I relapse or continue to recover. They will then use the appropriate treatment: either more IGG treatment or strong drugs. I asked about PT, and was told not yet. So for now I’m stretching on my own.
AnonymousApril 13, 2007 at 9:22 pm
Michael Besure not to over do the stretching. By that I mean just move those arms and legs. Make sure you are not over extending thru a regular stretch. Movement is important. You don’t want to pull anything or turn wrong right now! You want to be able to move every little muscle in all the natural directions that it is to move. Holding those positions are better than quickly moving here and there. Make that muscle work a little that will help you not get cramps as you start into heavier rehab. Your doing a great job!
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