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Living with Polyneuropathy CIDP, GBS, & CMT

Swelling, and nerve pain


#1

Hi everyone! I finally made it over to our new feed. Hope everyone is doing ok? So, 18 months our now…

I wanted to ask I went to the gym last Friday (new membership!) and was pleasantly surprised that I was able to walk briskly 30 minutes on the eliptical trainer. Several months ago I had been able to do only 8-10 minutes maximum before I lose steam. I won’t lie the last 10 minutes I had to push myself a little bit but honestly I did it! I was super happy and it was a huge accomplishment for my self esteem…

However… later that day disaster! I was barely able to cross the room, and limping with my right leg really bad. That night I was in excrusiating pain trying to sleep my legs hurt so bad. Learned my lesson though!!! The next day even worse. I was having horrible pain and limping. Sunday, my feet were really swollen and have been off and on all week now.

So, my question is … is this normal for post GBS?? The swelling, nerve pain, and motor coordination all from walking briskly on the eliptical?


#2

I am three yr. With g.b.s. and yes I have experienced swelling and server pain when I over do it. I also have days I cant get it together, meaning the pain, still I firmly believe once you get g.b.s. you have it for life . my body and mind has went threw so much. for me I still believe I can over come this, one day I will wake up and baaaam I will fell what I use to call normal. right now I have been learning to live with what I do have and am thankful everyday I can walk and talk. be strong and keep up the working out it dose help, just try to not over do it.


#3

Im not sure there is a “normal” for gbs. From what i read i had an exceptionally good to a point, except a few very specific nerves. With medication i have full strength and endurance until my blood pressure goes up for anything. Its been 2 years since i had gbs. I can work for hours at a deliberate pace but a quick 5 min jog will make my face hurt for hours and it gets hard to walk. If i dont relax quickly or i let my son get me upset about something it can hurt for days.

My neurologist says its nerve interfearance between regrowing nerves and the new alternate pathways they formed two years ago. Supposedly it will heal, for now i just adapt.


#4

I ran 3 miles the other day after 2 consecutive long days at work and it affected the nerves in my face which made it difficult to walk. I had worked up to the running but my PT said the combination was too much. It has taken a week for it to recover and I can still tell the effects. This has happened to me quite a few times along the way. Some times more than others. Being tired, overworked, dehydrated or spending too much time in the sun seems to be the trigger. That’s interesting about the nerve interference. I didn’t know that. Makes me feel better to understand this relationship and that it may still be able to heal after 2 years. My neurologist had never seen a GBS case so I got no feedback. I just got a referral for an experienced neurologist with GBS but I wasn’t sure if it was too late to see anyone now. I am missing the doctor support to help me understand the road to recovery but my PT has been helpful along with online support. Thanks!


#5

I got lucky on doctors compared to some, i went to the best hospital in the area and it has a neurology floor. My nurse said they usually get a GBS case every month, probably most of the cases in north alabama.

Just like you, I have found over work, stress, blood pressure, hydration, and especially lack of sleep make every symptom worse. Anything that causes inflamation around a problem nerve area.


#6

Hi Tarhealing
I’m sorry you have ongoing problems. I think even an experienced neurologist may struggle with the highly individual nature of each case. I’ve read so much on this over the last few months and the only consistent thing is that it’s not consistent! Tired, overworked, too much time in the sun… yup! Interesting what you said about running though. My neurologist, face doc and PT have all told me there is no issue with exercising. And yet if I break into a run I can feel all the impact hitting my face and whole head. I ran a week ago (not far, not fast) and since then my whole head echos, my neck hurts with nerve disturbance and my hearing is unbearably acute. Is that what you get? I don’t know whether to see a neuro or ENT. Or nobody and stay in bed for a week in the hope it subsides.
Very frustrating isn’t it?
Wish you well:)
Vicky x