October 30, 2013 at 3:51 am
I have been at this for about 2.5 years now.. about 2 years ago is when I crashed, couldn’t breathe and ended up in the hospital for a week and started on IVIG at that time.. I’m MUCH MUCH better now.. but one thing that continues to worry me is my trunk/ab weakness… does anyone else struggle with this?
When I laugh I feel like I am going to rip my ab’s away from my ribs.. it’s painful, uncomfortable, and just weak.. When I was admitted 2 years ago my abs were so weak I coudlnt’ even flex them enough to go to the bathroom or anything (sorry TMI).. so i’m better than that still. but i feel like all of my muscles have atrophied some since then -I had no atrophy initially , so not sure if it’s just the permanent damage that is now showing, as it takes a while for the muscle cells to die.. (my needle emg is always negative).
Anyhow, I always worry I’ll get a cold/cough and not be able to cough well enough – though my pulmonary tests are WAY better than they were 2 years ago when I was admitted.. still scary though!
AnonymousNovember 23, 2013 at 7:56 pm
Seems like we have the same symptoms regarding trunk weakness. I feel like there is an elephant sitting on my chest all day everyday (not so much in my abs). I read that it could be a side effect of the Gabapentin I am taking. I have noticed that a lot of my muscles have atrophied in some way after I stopped working. Nowadays, I try to do exercises and at least one chore (laundry or making the bed), once a day everyday. I, too, am worried about getting a cold. I rarely leave my house for fear of coming into contact with someone sick. I would hate to have a stuffy nose when I already have trouble breathing and swallowing. You are not alone. Hope this helps.
February 9, 2014 at 7:58 pm
thanks so much! yes, I am sick right now.. and a cough is just miserable! My abs hurt when I cough – like they are tearing! Still, i have a stronger cough than i did 2.5 years ago.. but I still worry.. I have two little kiddos, so I do get sick often, definitely makes the chest heaviness worse, Getting sick while the effects of my IVIG are the strongest is always preferable.. it’s scary when IVIG is wearing off and I get sick.. ugh
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