Surviving One Day At a Time

I am a Guillain Barre Syndrome Survivor. I'm thirty years old and first started experiencing symptoms August 16, 2007. It started with a little sore on my leg which I thought was a staph infection. The doctor tested it and said it was actually a strep infection and gave me Bactrim. I had taken it before and never had a reaction to it. After being on the medicine for a few days I woke up in the middle of the night having an extreme tingling in my hands and wrist. I work at a doctors office so I went into work early that morning hoping someone could help. I talked to a nurse and she believed that it was just carprel tunnel syndrome, although odd that it would pop up in both hands. As the day progressed the tingling turned into pain and burning and spread throughout my arms. Within just a few hours my legs were experiencing the same pain. The next few weeks are really blurry for me. I was unable to sleep, pain pills did not even begin to touch the pain. I couldn't stand to even wear clothes because my body hurt/burned so badly. After none of the family practice doctors I work with were able to help they referred me to an infectious disease doctor. I had every kind of lab test imagineable done and everything was normal, some test they ran two or three times. I saw him daily and progressively was getting worse. He was stumped since none of the pain meds helped and ended up hospitalizing me for pain control. From there I was referred to a rhematologist who ran even more labs but said he couldnt help me. I had a  ct scan, ultra sound, mri, everything showed that I was fine and I was starting to believe that that I was just crazy. I could feel my muscles shrinking and pulling up. I kept ice bags all over my body because of the constant burn. My hands were the worst. I had no feeling in my feet and finally was referred to a neurologist. When he tapped my knee, nothing happened and at that moment i knew I wasn't losing my mind, I really had a serious problem. I'm lucky, I never lost control of my body or my breathing. I was always able to walk, even though very painful. My neuro started me on some meds, mainly Lyrica, which didn't help at all. Finally he found the right combo and I began to get better. It's been almost 2 years and I just quit taking my last medicine 2 months ago. I worry about having another episode. I've been told that viral infections can cause it to come back. Anytime I have a abnormal pain I can't help but wonder if it's coming back. I still occasionally have some pain, tingling, or numbness but it doesn't usually last too long.

kdstew kdstew
6 Responses Jun 16, 2009

Hi, would you mind if I posted your story to my Facebook page called Guillain Barre Syndrome Survivors? If you would like a link it is

My son was diagnosed at 13 months. He is 2 now and is fully fuctional. He gets tired really easy, gets hot and its hard to cool him down. Also he cries a good bit. If you don't mind me asking what medicine did you take outside of the hospital?

I also have GUILLIAN Barre, and have terrible pain, and a lot of stiffness. My medication doesn't seem to be helping me either. My doctor has me on Gabapention and Lyrica. I was wondering what your doctor came up with to help you? I've had this illness since Feb. 4th of 2012, and don't seem to be getting any better, they said I had one of the worse cases and it could take up to two years for recovery. I'm praying every day that I start getting better.

what was the combo of medication you were given? I am still praying for some kind of relief from my pain.

Check my blog for our Guillaine-Barre stories, pics, info, etc. Go to Choose the category Guillain-Barre Syndrome/hospitals. Scroll down (back) to the first entries. I believe the very first one is "Living in Hospitals, Part I". More recent stories in other categories mention how the GBS survivor is recovering now, although they are not linked to that category. Every GBS survivor is different. This is just one example. Life is good!

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