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Living with Polyneuropathy CIDP, GBS, & CMT

Tingling, burning pain in hands and feet


#1

I was diagnosed with Guillian-Barre March 17, 2015. I almost died. They called my family in to say their good-byes. I was in ICU for 2 1/2 weeks. My systolic blood pressure bounced around from 300 to 70. I was on a respirator, partially paralyzed, and mostly non-responsive. By the grace of God I survived. I was released from a rehabilitation center on May 1, 2015. The syndrome is much worse than medical journals give it credit for.

Anyway, the reason I'm creating this thread is to inquire about pain medications. I went off of everything except for Gabapentin about 2 months after my release. I am taking 600mg 4 times a day. However, now my tingling, burning pain seems to be getting worse especially in my hands and feet. I read some old posts about this problem, but I was wondering if anyone is currently having the same problem. If so, what medications or treatments help ease the pain?

I don't understand why it seemed to be getting much better and all of a sudden now it is worse. I had even considered getting off the Gabapentin. Now I can barely function because of the pain.

I appreciate your recommendations.

Thank you,

Gwen


#2

I take Gabapentin as needed...not every day. Pain is from nerve activity....so no you can't just lay around full time but you do need supportive devices when you are doing activities that your body is not ready to do. Basically take pain meds as you need them...and if that is regularly then fine....but go see an occupational therapist...possible hand PT person...I wear wrist/ankle supports from time to time....as nerves grow weird messaging can happen so you may be functioning then have what seems like a down turn...then again those areas may have been at rest...or only conditioned to a certain point and now you have done too much and your pain is all over the map. I know it seems like making smoothies or taking out the trash is like doing nothing but your body has become de-conditioned....you have to start all over training and conditioning what to do and that comes with soreness and pain. Over doing it causes pain...not strength. REST. Ill send you an article that will help you.


#3

READ THIS....THE ABSOLUTE BEST ADVICE I HAVE COME ACROSS.....AND ACCURATE FOR ME AND I HAVE BEEN DEALING SINCE 09/2012

6-AfterGBS.pdf (122 KB)

#4

thank you for this information, it,s very useful