Reply To: exercise
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.