Any aching joints?

    • Anonymous
      April 17, 2008 at 11:36 am

      Hi there!
      I was diagnosed with GBS last July 21st. I had extreme muscle weakness and was unable to walk and had numbness and tingling from the neck down. I was treated with IVIG for 5 days at Emory hospital in Atlanta. It helped and I slowly started getting better. It has been almost 9 months and I still have some intermittent tingling. The other complaint I have is joint pain in my fingers, elbows, knees and my left hip joint. Sometimes it keeps me from going to sleep or wakes me up (the hip joint pain).

      My first cousin on my father’s side was diagnosed with GBS a couple of months after me (believe it or not) and she is still having a lot of tingling and numbness and also has joint pain. She did not have any treatment such a plasmapheresis or IVIG. She is now taking neurontin but wants to get off of it.

      I was wondering if anyone else has had problems with joint pain? If so, did it ever go away?

      another question – has anyone who had milder GBS (like my cousin and me), ever STOP tingling??? How long did it take?

      Thanks for the info

    • Anonymous
      April 17, 2008 at 12:01 pm

      hi debbie & welcome,

      given time your tingling will go away. since everyone is different i have no idea how long it will take you. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      April 17, 2008 at 1:40 pm

      Hi Debbie,

      As Gene says, everyone is different. My case was mild, but the damage appears to have been pretty bad as my reflexes have never come back and still to this day, my feet tiingle and twitch a lot of the time. So for me, its been 11 years of this and now with older age, I fear I will not get any better. But, I do deal with my life fairly well with being single and working 40 hours a week. Over the years, I have been on most of the meds for nerve pain and feel like I’m about to make the rounds again with a few years of neurontin. The amitryptiline I have been on put on mega pounds. Oh, one big note is multi-vitamins with lots of the B’s does help a lot. I’ve got to get my “Nature’s Way Alive!” stocked up.

      I have noticed increased joint problems/pain. When I am tired, I can barely walk down stairs and look rather crippled. I live with heating pads in my bed and have one on my back and one on my feet (they are on timer and shut off automatically while I sleep).

      Good luck, and keep in touch. I hope you aren’t looking at the years of this as I have endured… everyone is different!

    • April 17, 2008 at 1:55 pm

      welcome to the group…

      Joint pain does go away. You are still fairly new to this and everything is still healing. I found a lotion by Village Naturals (it is sold at wal mart and I am sure other places) that is all natural and helps a lot for aches and pains. Since using ben gay type stuff can be dangerous, I gave this a try and an pleased with the results. I was hit with GBS a year before you…in the hospital a year to the day that you were diagnosed. I still get tingling in my feet and legs and occassionally other places (face, lips, hands, arms, fingers..). It gets better. Not sure if it will be gone completely but I sure look forward to the day when I realize it is. I know it has gotten better and have noticed a change in the intensity and frequency even in the past 6 months. Rest rest rest. I still feel lazy when I have to rest, but have also paid the price when I didnt. The pain does ease after a few more months. I do remember pain and stiffness and unless I overdo it my joints are fine.
      Hope this helps!


    • Anonymous
      April 19, 2008 at 8:23 am

      Dear Debbie,

      I had failed back surgery in 1974, degenerative disc disease w/osteoarthritis of the spine and knees. However, after GBS followed with CIDP, I have extreem joint pain with lack of flexability.

      Vitamin B-Complex and B-12 are good for nerve maintenance and help in nerve regeneration, they have given me little or no relief (that I can feel) in aching joints over the past 11+ years (since 1997).

      The one medication I found that I can actually feel the relief of joint pain is Lyrica. I take 150mg x 2/day, and it is a medication that actually works for my aching joints – a medication I know is working…I felt it from the 2nd day I took the medication and haven’t had the severe aching joint pain since. I have been taking Lyrica and the only complication is approx a 15 lb weight gain.

      I still have tingling and numbness in my hands/feet/legs. I was misdiagnosed with GBS and did not receive either IVIG or plasmapheresis but have been gettting regular treatments of IVIG since diagnosed with CIDP (2000).

      Warmest regards.