Questions about recovery
AnonymousJune 29, 2010 at 2:07 pm
I have experienced a few changes in myself lately and was wondering if others have felt any of the same.
I left the hospital after nine days, walking assisted by the arm of one of the nurses on January 11 of this year.
My “recovery” seemed to slow down to being unnoticeable to me around the first part of April.
I exercise regularly (almost daily) on my recumbent bike and use 5 lb weights for upper body.
About a month ago, I started experiencing occasional twitching in my arms, hands and other parts of my body and shooting pains up my right leg. (I have not had problems with pain before.)
Increased tingling and decreased numbness in most of my body, including my nose and throat. The tip of my nose now tingles all day long and I can now feel my feet and toes when I wiggle them. Feels like I am standing barefoot in gravel!
I have also developed a severe “tightness” in my calves. I have had two muscle pulls in my right leg along with r. knee problem that required a cortesone shot to relieve the pain. I now have to stretch my legs several times a day to help with the tightness.
I am hopeful that these new changes are part of the recovery and speculate that they are caused by muscles and nerves that have started “communicating” with each other. :confused:
June 29, 2010 at 2:19 pm
Hate to speculate, but you sound like me.
I was originally diagnosed with GBS and given IVIG, walked out the hospital and in 3 weeks I was jogging lightly again. Got up to a good pace after a week or two then started getting muscle aches/pulls in calves and thighs. This quickly turned into tingling/numbness in feet and wham I was back to the Dr. They had to retreat me with IVIG again and a specialist changed the dx from GBS to CIDP.
That was nearly 3 yrs ago. I would HIGHLY recommend a specialist at a teaching university/hospital evaluate you!
They will spend hours and hours testing you to give you a very solid diagnosis.
You want to know exactly what variation of CIDP you have OR if it is GBS how to get it under control and not aggravate you condition.
The tightening of the calves still persists when I am on the tail end of my cycle for IVIG treatment…
AnonymousJune 29, 2010 at 4:50 pm
It seems as though the GBS recovery has a lot of highs and lows, with gradual improvement over time. I have experienced some of the same things you mention (face tingling lately), but not the tightness. I have read other people commenting on this. I have strange, weird sensations from one day to the next. Hopefully, you are just having recovery sensations and not any progression downhill. I would think if you noticed increased weakness, then you should be concerned. I did not develop pain until about a few months ago. I think it is attributed to the increased activity level. That is great that you are exercising, but maybe you should try to rest more and back off from that. If I feel my symptoms increasing, I try to slow down and take more naps and rest. Hard to do when you want to be active, but it is not worth it to have a relapse of symptoms. Although sometimes I find it doesn’t matter what you do, your body has a life of its own! 😉
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