• May 1, 2012 at 6:43 pm

      Since I am still fairly new to all of this (it will be a year as of memorial day that this all started), I was curious if yall work out/exercise and if so, how far you push it? I had pretty bad GI symptoms and weight loss that preceeded all of this and was losing weight up until my first IVIG, which then stabilized everything.. I seem to have a bit of muscle atrophy in almost all muscles since every single muscle seems to have been effected and is therefore weak and shakey most of the time (though MUCH better than before IVIG)

      I have always been in shape, so now I am just a bit flabby for my liking, but my problem is if I over exert myself one day I really seem to pay for it for at least a day afterwards- the muscles are sore and weak.. Does anyone else have this problem? Does that mean I shoudlnt’ work out, would it even be productive? I used to be a runner, and have the urge to run so badly, but I imagine that would especially be a bad idea right now.. thanks in advance, hope everyone is doing well

    • May 1, 2012 at 7:29 pm

      I remember at one of the semi-annual symposiums a physical therapist described how CIDP affects the muscle “motors”. She said that this meant that not all of a muscle was working. That this meant when we exercise we are not using the whole muscle and thus throwing more work/strain on the part we are using. That we should therefore exercise but take it easy to keep from over working that part of a muscle that is actually working.

      I find that I can do a lot of “exercise” that I used to do but not for as long a time. I tire much more quickly than I used to.

      Hope my memory is correct and that this helps you.

    • GH
      May 1, 2012 at 8:01 pm

      It’s a matter of pacing yourself. You do need to exercize, but must avoid overdoing it.

      Right after I went home from the hospital I started doing outpatient physical therapy twice a week. The rest of the time I mostly rested up for the next session. I could just barely walk with a cane a month out of the hospital, so just getting to and from therapy by bus was an effort. Gradually, my strength and balance improved, and I was able to expand my walking range and be more active outside of therapy. I stopped physical therapy after six months. Now, I just do some exercizes at home, but mostly just try to get out regularly to run errands. I’m necessarily more sedentary because of my disability, so must pay more attention to diet and exercize to stay in shape.

      I doubt you can avoid sore muscles โ€” some of that just comes with the disease. My legs are sore every morning regardless of how active I have been. I find that getting up and around makes them feel better, but on the other hand, being on my feet for too long is tiring (and painful in the feet). Finding the right balance of activity and rest is the key.

    • GH
      May 2, 2012 at 3:44 pm

      I found the article “Exercise for CIDP.” It’s in the Summer 2010 issue of The Communicator, the newsletter of GBS/CIDP Foundation International. Perhaps they still have copies available.

    • Anonymous
      May 2, 2012 at 11:07 pm

      I have been fortunate in that I have been able to work out at pretty much the same intensity as before I got CIDP. I will tell you that my neurologist has cautioned me a number of times to take it easy, because overdoing it could worsen my condition. I suggest you discuss the issue with your doctor. No two people with CIDP are exactly the same. Do take care to much sure you get sufficient rest. Your body needs to marshal its resources to fight this disease. When you have the energy, an appropriate exercise program will be extremely helpful — physically AND mentally.

    • May 3, 2012 at 9:28 am

      THank yall so very much!!! I appreciate yalls replies! Bill- I like the explanation of the “motors” not all working! I sure feel that is the case!! I can still do everything I used to do (I don’t have anything paralyzed – when it all first happened the tips of all my fingers were all floppy though, but now normal after IVIG).. But it’s just every single muscle that is just quite a bit weaker than it used to be.. just shakey after much exertion.

      I lead a baseline active lifestyle- my job is running around all the time, a bit physiclal at times, and then two kids 2 years and under- carrying and chasing them around.. that’s why I have tried to be careful up to this point to not over exert myself, since the dr’s have been telling me i’m already technically doing this.. but I have to to lead as close to my “normal” life as I can.. but I am feeling better and better, and having the urge more and more to try and get a little bit more in shape! Hopefully with more frequent IVIG I will be able to work out again!!! ๐Ÿ™‚

      GH- thanks so much! I will try to find that as soon as I get a minute!! I imagine it is a fine line between have the exercise help you and over doing it!

      Goodney- I can’t believe you were able to workout the same throughout all of this!!! I can’t even imagine that is great!!! I could barely put one foot in front of the other

      Does anyone else feel like every single muscle in their body was affected? it went from my toes to my face and everywhere in between, and still they all just have less power than they should at 31 years old.. but hey, i’m still VERY thankful I’m doing as well as I am almost 1 year after this all started!

    • May 3, 2012 at 1:34 pm

      It will be 5 years for us this Oct. Not until about a year and a half ago were we able to genuinely work out. Can run 4 miles now and benches. In the begining, especially the first two years, working out was impossible. Every day activities were all that could be done, with exhaustion at the end of the day. Muscle atrophy was obvious. Now, there is distinct definition and much endurance.

      At the symposium in Chicago three years ago I think, It was said by one of the doctors that no painno gain does not apply to cidp/gbs patients He said “pain, no gain”.

      When we were in PT it was explained to us like this, lets use the lower extremity…. If your foot/ankleis weak or affected, but not your calf area, the calf would now do its work, plus the work of the ankle foot muscles as well. So it is already fatigued by having to make up the work for the muscles not getting the message from the brain to work properly. So if you ad over working out to the equation now you are over fatiguing everything. Just an oversimplified way of explaining it, but hopefully you understand what I am trying to say.

      Once we started healing with the proper amount of ivig so no further demylienations were taking place, the reception of the message from the brain to the nerves allowed the proper muscles to work correctly and fatigue became better. About then is when we were able to work out more. All in all it was about three years total for us before working out was doable. That is why it is important to stay ahead of the cidp. If you are already feeling tingling, numbness, pain, etc. right before your ivig, another demylienation has started. Unfortunately it started well before the symptoms became evident. You have to have the ivig schedule working so that no symptoms are apparent so that healing can start. Otherwise, it is as if you are in a rowboat with a hole, the hole does not get bigger, but the water continues to come in and you have to constantly keep bailing just to stay afloat. If you patch the hole up, you can stop bailing and paddle on. You have to be one step ahead if you want to progress and not just continue on.

    • May 4, 2012 at 1:41 am

      good explanation Dawn ๐Ÿ™‚ That’s where i have been—-in the rowboat with the hole, the ivig is only keeping the hole from getting bigger for me—–need to find what will patch the hole up.
      bny–it sound likes your daily life is enough exercise already with the cidp, on your feet all day at work–keeping up with two young children at home. Probably if you wore a pedometer you would find you are getting in more exercise then you realize.
      maybe start with something relaxing like yoga??

    • May 8, 2012 at 2:14 am

      Thank yall so very much!!! I like that explanation Dawn! We went on a mini vacation this past weekend and hiked up a big hill carrying kids haha (I didn’t realize it was going to be so steep and such a long way down to this river).. I felt like I did suprisingly well! Kept up with my healthy husband, though my legs did burn and were sore the next day (but only for one day!). I also did some swimming (tredding water just with the kids, nothing super hard).. my muscles burned pretty good then.. defintely not my old body. I wondered if maybe just simple swimming would be good – my joints are SOOO painful since all of this started.. Lori- Your right, i’m pretty sure I walk quite a few miles each day between work and my job.. it’s a bit of a hard adjustment from going from always in shape to not.. but still I’m thankful I’m so much better with the IVIG.. So no complaining here! ๐Ÿ™‚

    • Anonymous
      May 9, 2012 at 9:42 am

      I basically can’t exercise anymore. Any exertion for more than a minute or two starts making my muscles sore, and my Dr. was very specific that I have to stop immediately if that happens. So although I would like to exercise more, I can’t. Even just standing for like 10-15 minutes starts to get my muscles sore.

      But I also have a problem with knee joint pain. This is to be expected, because my leg muscles are weak, which puts a lot of stress on my knees. Swimming is a good exercise if you have joint pain, especially in your knees. But for me that’s a non-starter just due to my muscles getting tired quickly.

      The other thing to consider is what’s causing your muscle pain. My Dr. gave me a prescription for Klonopin, which I found helpful on days where I really stressed my muscles. It’s normally given for epilepsy, but one of the side effects is that it will relax your muscles…which is helpful if you’re getting cramps! And it also makes you sleepy, so it’s great if the muscle cramping is preventing you from sleeping.

      But ultimately, I stopped taking it because Klonopin is potentially habit-forming, and I didn’t want to take too much of it and risk that. So even though it was helpful, I just would rather not take it.