Hoping to get some help. I was diagnosed with GBS in January 2014 and after treatment seemed to recover until I had a relapse three weeks. Was re-diagnosed with CIDP.
I have always had use of my legs (initially with support) but lost movement in my arms and now have poor arm strength. I also suffer from permanent pain in my wrists and ankles. I wake during the night with searing pain in my feet (this also occurs when I sit for two long with my feet down)
Can anyone suggest whether this is "normal" and whether I can hope for the pain to abate.
There is now a cure for CIDP. Don't know if you really have CIDP yet but, if you do, know that there is help at Northwestern University Feinberg School of Medicine in Chicago. Dr. Richard Burt is head of Immunology there and cured my son of a very malignant form of CIDP. He had lost ALL function in only 6 mos. Dr. Burt has also been curing (he uses the words "permanent remission" 100s of cases of MS for over 10 years. Now he is treating Scleraderma, Lupus, and other autoimmune diseases. I tell you this because my son was NOT told by UCSF, Stanford, or Mayo Clinic in Minn. He had to find it on his own through another cured patient on the internet. Don't know why docs & the GBS/CIDP organizations seem not to want people to know about Dr. Burt. Northwestern is a FIRST RATE HIGHLY ESTEEMED hospital on the shores of Lake Mich in Chicago, not a back alley storefront selling hope as your docs will imply. His work has been peer reviews, published in Lancet, & you can see grateful patients all over the internet. Good luck.
I'm so sorry you are going through this. If by searing you mean you feel like you are being cremated alive, then yes...that's what I have on about 40% of my body. I get IVIG every 3 wks and can tell it's wearing off at the 2 wk mark b/c this pain comes back. Everywhere I have had this pain in the past is now numb. I go back and forth with Lyrica and Neurontin and combine them with Vicodin and Valium which seems to the most. Sometimes it is so bad that it hurts to even sit down or have my clothes or bedsheets touching my skin. Sometimes when I am at work and the burning gets really bad, I'll get an icepack to help numb it down. I think just giving the nerves a different sensation to feel is why it works, but that's just a guess.