GBS pain

    • Anonymous
      July 2, 2012 at 9:14 pm

      I am in my 4th month of GBS. I was in hospital 1 week have had 2 IVIG treatments.. i am a 69 yr old female. i go to PT and OT 3 to 5 times a week and have to use a walker. My feet and hands are numb, ice cold,and prickly. i am in this kind of pain most all day. i take 3600 mg neurotnin and 20 to 40 mg percacet per day. No one posting here seems to have had these same symptoms for as long as I have. None of the books or articles say much about dealing with similar symptoms.

      Can anyone relate to what I am saying, and can anyone provide any comments or advice?

    • Anonymous
      July 2, 2012 at 10:54 pm

      Hello Cathebt, I had AMSAN variant GBS in April 2010 and still have the symptoms you mention. I also take 3.6g Gabapentin, 75 mg lamotrigine, 40 mg oxycontin and 37.5 ug/hr fentanyl patches. I have had my medications gradually altered by the pain consultants every few months, but I still suffer terrible pain and fatigue. I was initially told that it would get better, but as time has progressed, the neurologists become more vague in their expectations. Any honest pain consultant will tell you that this type of pain can be notoriously difficult to treat sometimes….I really do sympathise and hope your symptoms resolve soon.

    • GH
      July 2, 2012 at 11:10 pm

      My case of CIDP was similar to GBS in its initial stages. It was extremely painful in its early stages and I was taking oxycodone for a time in the hospital. After recovery began, the pain became tolerable and I dropped all pain medication. A year and a half out of the hospital, my feet still hurt constantly — more so when I walk on them for an extended time. My neurologist cannot say whether they will ever return to normal. A few months is not a long time for recovery from these diseases.

    • Anonymous
      July 3, 2012 at 3:08 pm

      I am also in my 4th month post GBS dx. I was alot like you in the hospital 1 week I too have had IVIG twice once in the hospital and then about a month after being released. I was just released from PT/OT I was going 3 times a week. I still walk with a cane. I am in pain all the time. Buzzing tingling over sensitive and then total numbness. Scarey for me is that it feels like it is getting worse. Now it has moved to my head and face. My vision is blurry and my face feels heavy. I take 1500mg of gabapentine. and 35 mg of predinosone each day. But my pain hasnt improved and they keep upping my gabapentine…I keep calling the doc and he keeps adjusting my meds.

    • Anonymous
      July 7, 2012 at 5:43 pm

      Seems like when I am more active or if I have been to pt and ot I am in more pain. Nikki, why did you discontinue pt and ot? therapists seem to think I,ll be there for a year Even though i don,t sleep during the day I am in bed most of the day…no energy or motivation to do anything. I also wonder if I have GBS or CIDP….I LIVE IN A SMALL town and drs. don,t seem to really know what to do for me…so i read as much as possible on internet…thanks for listening.

    • Anonymous
      July 9, 2012 at 12:19 pm

      Cathebt, I was released from PT/OT because the therapists said that I had accomplished my goals of being able to take care of myself in the home and my balance is better. I dont feel like I am ready but they discharged me. Ill be talking with my dr about it on Tuesday. I too dont feel like the dr is up on this…also a small town. I keep reading and studying…

    • Anonymous
      July 27, 2012 at 3:08 pm

      7 months post GBS still have the nerve pain dr state that that is the nerve either trying to regenerate or find a different pathway to send the signals According to Dr about 85% of my nervous system has been affected byt the GBS. Not sure which is worse the nerve pain or the numbness from the drugs. Currently on 1200mg GABAPENTIN, 300mg LYRICA and 200mg AMANTADINE. I hope that things get better for you soon.