I'm A 30 Year Guillain-Barre' Syndrome (GBS) Survivor!!!

I had Gillain-Barre' Syndrome (GBS) in May 1981, at the age of 19.  At that time, I was full of energy and full of life... when it came to a sudden halt.  I had total paralysis, except one eyeball and one thumb joint.  Communication was impossible as I was on the vent for 40 days.  I could tell no one of the pain I felt.  I could tell no one of the anxiety.  I could tell no one ANYTHING!  I spent six months in the hospital, but did gain full "physical recovery".  That is, I can move everything, but the pain and the fatigue has NEVER left my body.  As I age (49 now), the pain and fatigue worsens and I have totally lost confidence in the medical profession as it seems they are too easily to diagnose you with "Fibromyalgia", rather than GBS or CIDP.  I even had one neurologist tell me recently that "it doesn't matter what they call it; they treat it the same way".  NOT a good thing to say to someone who apparently knows more about GBS than he did!!!  I would love to share my complete story, but must leave for now.  NEVER, NEVER, NEVER GIVE UP!!!!  If God brings you to it, He'll bring you through it!
51-55, F
9 Responses Apr 19, 2011

Hi really scary and my deepest sympathies. Glad you made a physical recovery but sorry about the fatigue. Just one Q: How was it like not being able to communicate? Were you frightened, did you feel panic or how what thoughts go through ones head?

Just a history: I had Gillian-barre syndrome in 1978 at the age of 25. I was as "healthy as a horse", and was told "as strong as an ox". I had been physically active on a working farm, hauling bales by hand, irrigation pipe, taking care of 800 head of sheep who had lambs in the winter, and operating all farming equipment needed for 3000 acres.
I had total paralysis. I was on the ventilator for~3 months. I too had communication problems and eventually after about 1.5 months, I was able to make a clicking sound that helped to communicate. I have since then "recovered". I do say that I am ok on the outside, but nearly every system on my "inside" has something wrong. I was wondering if anyone else has lasting, constant residuals.

Ironically, I was diagnosed with GBS dec 2006, shortly after an Iraq deployment. In 2010 I was diagnosed with fibromyalgia. I still haven't regained full feeling in my legs & feet. Very little sensation, but much pain.

Thank you for the inspirational words. I suffered from GBS 10 years ago, having been paralyzed from the jaw down and showing axonal nerve damage. It took me years to recover "completely." A decade later I still suffer from pain and severe fatigue which seems to be worsening with age. I too have been very frustrated by the lack of understanding demonstrated by the various neurologists I have seen. It's so easy to feel like I want to give up, but knowing that I am not alone in this suffering certainly helps. Stay strong everyone <3

I feel your pain literally! I was diagnosed 8 years ago at age 33 and was a severe case. It took about a year to recover but I am now over 40 and am so fatigued I could sleep all the time and my body is in so much pain. Especially my legs, feet and back. Getting out of bed in the morning I can barely walk it hurts so much. I feel like my employer thinks I am unreliable cuz I take a sick day to sleep a couple times a month. I frustrated because no one understands and doctors are no help. They always diagnose me with depression and give me medication for that. It doesn't help the pain or fatigue. I feel for anyone going through this. Everyone felt bad at the time but it is long forgotten for everyone else. I still feel the pain every day.

Basically my life story. I was initially diagnosed 10 years ago. Even my own parents tell me all the time that I'm "recovered and it's over with." For them it is. It seems no one truly understands just how much pain and exhaustion I struggle through on a daily basis. If it's any consolation at all, just know that there is someone else out there who understands what you are going through every day. Stay strong <3

Have you considered applying for social security disability?

31 year survivor here. I think about it all the time and worry about the fatigue

We must keep on with our lives. A positive attitude plays such a huge part of our day-to-day living. When I was young, I used to ask "Why me?". As I have grown older, I state, "Why not me?" Don't worry... we are SURVIVORS. Worry causes fatigue. If God brings you to it; He'll bring you through it.

It has been so long since I've been on this site. Yes, I am a 1981 Guillain-Barre' Syndrome Survivor. Complete and total paralysis, except one eyeball, and one thumb joint. I've had nothing but problems with trying to get the medical profession to understand the residuals - the pain and the fatigue that GBS has left me with for over 30 years. Not only is it the medical profession, but also the Social Security Administration. Even my family doesn't believe the suffering I must endure; when all I want them to do is "BELIEVE". Even my husband of over 19 years recently left me, because he "resented" having to fulfill more responsibility as my condition weakened. His vows should have read "in health or in death, but nowhere in between". Now, at 50 years old, no job, and no way of earning a living, I am once again starting a new chapter in my life. Funny how at the age of 50 the only men that are interested already have other women in their lives!! However, I remain faithful until my divorce is final. <br />
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I am a huge advocate for GBS Survivors. I hope to one day become a liaison for my state - once the dust settles and I see what my new future holds for me. I have done quite a bit of research and have written several articles and stories of other survivors... even children. I pray that one day there is an answer for all of us who must suffer. In the meantime, I continue to spread awareness and help anyone who needs me.

Thank you for your story. Whoa.....sounds like the pain is something that never goes away! God is good and on Him I depend!

There are no two cases alike. Some never even experience pain; some it goes away; some of us live with the constant reminder of our struggles. Remember that difficulties are opportunities to better things; they are stepping-stones to greater experiences. When one door closes, another always opens!! Stay positive!!!

I am in tears. I "had" GBS in 1985 at the age of 18. I was complaetely paralyzed and unable to even bl<x>ink/swallow etc. The fatigue and pain continues to worsen as I become older too. I never fully recovered although I look "fine." I lost faith in the medical community a long long long time ago. I've done nothing but struggle with health, finances, and trying to not become homeless since then. I'm glad that many GBS patients have supportive family and friends. I didn't/don't and the isolation becomes so depressing. Unless you've experienced this first hand: I don't know how one can possibly grasp this disorder and really get it. It has devastated my life ( I was a professional dancer) and it continues to bring me blessings. I LIVE everyday, but I am also terrified Everyday. Thanks for sharing.

This is long overdue. I actually forgot about this site until recently. I can feel your pain and your anguish; I share a few tears with you too. Even after 30+ years, every time I read a new story, write a new story, or just think about the ordeal that we suffered, I, too, and in tears. I was the same as you -- I was not a professional dancer - but I was a student and a teacher; I was a runway model at one time; I was active; I worked two jobs and went to college at night. I was 19 - and like you - had the inability to blink/swallow or even sweat or cry. I was on the ventilator for 40 days and 40 nights - knew there had to be a rainbow somewhere. My pain and fatigue really threw me for a loop in my late 30s and eventually had to stop working at the age of 40. I didn't want to admit to myself or others that I was in so much pain and that I was SO TIRED - so I pretended that I was quitting my job to be a stay-at-home mom. We have BOTH walked through hell barefoot quite a few times. It is a day-to-day struggle with health, finances, and keeping a roof over our heads - it is life-changing; its devastating, its invisible; and its FOREVER. For me, I feel as though how can I possibly get anyone in the medical profession to believe me - when my very own husband did not believe. I know longer have the support from him; I no longer have a job; and pretty soon, there is no telling what I will no longer have. However, I do have my faith and my belief in God and I know that He always provides. Thank you so much for your reply to the short story I placed on this site. I'm praying for you; I walking the same walk with you; I feel your pain; I'm here for you. (Tracey)