Guillain-Barre and chronic fatigue

barista · Guest

My daughter had a moderately severe case of Guillain-Barre a year ago. Although she seems to have made a complete recovery (so says her neurologist), she is constantly exhausted and is having trouble with short term memory and concentration. She is being tested for all types of causes for the fatigue but so far all blood work and tests have been fine. Has anybody else had a problem with chronic fatigue after recovering from Guillain-Barre?

Heather_2 · Silver Member Joined: 27 Mar 2006 Posts: 280

Most patients recover from GBS and return to normal lives. Despite the good prognosis for recovery, GBS can cause long-term disability which is the result of weakness from the motor nerve injury that occurred during the acute illness. In a recent study in 83 patients recovering from GBS, severe fatigue was one of the three most disabling symptoms by over 80% and it is more common in women. Another study showed that 3-6 years after the acute illness phychosocial functioning was seriously affected.
What can help in reducing the daily fatigue is some supervised training program or some light aerobic exercises.

dojack · Newbie Joined: 21 Apr 2006 Posts: 1

x100 · Newbie Joined: 15 Jun 2006 Posts: 1

I had GBS 7 years ago. I was told that I had made a full recovery too, although I didn't feel I had as I too had memory and concentration problems as well as CFS. For the most part the memory and concetration problems have sorted themselves out, but I still suffer from chronic fatigue. I have had many tests but nothing ever shows up as abnormal.

I work part time and I have learned to take each day as it comes and adapt my life to my energy levels - whatever they may be as they fluctuate a lot. Although this has been very frustrating over the years things are gradually becoming easier.

Cape Town · Newbie Joined: 25 Sep 2006 Posts: 4

Hi i have found that by taking Dihydroquerctin it helps me combat the CFA associated with Gillium Barre Syndrome.

tmj · Newbie Joined: 01 Nov 2006 Posts: 1

I was suddenly struck with GBS 10 yrs ago two weeks after giving birth to my first daughter. It was a very scary time because I had a very rare form of the desease called Miller-Fisher variant of Guillen Barre'. My symptoms started at my head and then quickly moved down. Waking up one morning to nurse my newborn I had double vision and then it all went down from there. It took two weeks for anyone to diagnose it and many days of IMG. After 6 months of almost complete paralysis including my eyes I slowly recovered. My daughter did not suffer any ill effects of my desease other than I could not hold her for months. I was adament though that I continuing breast feeding with the help of my husband holding her to me, that I was unable to take any pain meds. After reading that GBS survivors still have chronic fatigue I now know that GBS is probably the cause of my intermittant bouts of CFS. I now have three beautiful daughters and hope that I never have to experience that awful time again.
Has anyone else out there suffered GBS post-natally? I would love to hear from you.

brettm7 · Newbie Joined: 11 Nov 2006 Posts: 1

I also was stuck with GBS immediately after the birth of my 3rd child. I was diagnosed 3 weeks post delivery. I suffered paralysis in face, legs and arms, difficulty breathing, eating. I began IVIG immediately after diagnosis and had to stop breast feeding immediately due to the risk of hepatitis. I am now almost 3 months post delivery and have fully recovered in the face and arms. Some continued trouble catching my breath and minimul weakness in my legs. My biggest issue right now is fatigue, which I am realizing is more than the usual tiredness from having a newborn and two other small children in the house. Any advise on how to deal with fatigue would be greatly appreciated. Does Caffeine make this worse?? Any dietary, vitamin, exercise recommendations would be greatly appreciated.

blueandyellow · Newbie Joined: 12 Nov 2006 Posts: 1

I was diagnosed with GBS, Miller Fisher syndrome, in 2002. I'm supposed to be recovered, too, but I experience fatigue and balance problems. My legs ache sometimes and by 1 or 2 pm I've had enough for the day. God forbid it's a day I have physical therapy! I'm usually done earlier that day. Of course, I must keep going because I have children, but it's not easy or done well.

Guest · Guest

I was diagnosed with GBS, Miller Fisher variant, in 2002. I'm fully recovered, too, according to neurologists, but have residual muscle weakness, proprioceptive imbalance, and chronic, aching fatigue. I've been iron deficient anemic which makes it all dramatically worse, but that's only happened a few times. I HAVE NO IDEA WHAT TO DO. I still do physical therapy, but have switched to a Pilates-based physical therapist with a woman where I live who has her doctorate in PT from Duke. This helps a lot more than any of the more traditional modes I've tried as it has addressed core strength and balance directly. (25 toe lifts at the bar. 10 pelvic tilts... awful and discouraging week after week with the athletic trainer types.) I've also done massage therapy which helps with the aching pain and fatigue. I don't know where you live, but you need to look for reputable people who are involved with mind-body wellness with lots of experience. Also, there are drugs in the pipeline to help people like us with this chronic fatigue from GBS. The company is Neuroscience, Inc., I think. Google it to see if and when trials are starting. Your daughter may be a good candidate. This is what I've been doing. It helps the symptoms.

janie · Newbie Joined: 26 Dec 2006 Posts: 1

My experience with GBS was fortunately brief, but could have been much worse. My initial evaluation was "stress" had caused my body to go numb. I was un-diagnosed for 3 days first by a PA at a hospital and then by hospital """interns""" (notice I DID NOT say attending physicians) even though my primary care physician had sent me to the hospital with suspicions of GBS. (I still have quite a bit of left over anger about the entire situation.) This is the way it went down.... Two weeks ago tomorrow, Tuesday the 12th, I had a numbness in the tips of my fingers. I passed it off as my neck being out of whack. Later that night, my lower back started hurting. I decided to set the alarm for early the next day so that I could call my doctor to make an appointment for a back and neck adjustment. I woke up Wednesday and had the all over "not right" feeling. When I got out of bed I felt like I had no control over my legs and my arms felt weird. I was very startled and felt like maybe I had had a stroke allthough my "right mind" told me no, this was a symetrical feeling and couldn't be a stroke. I went to the hospital on the advice of my primary care providers office. What was to follow next will continue to haunt me and unsettle the very core of my being for a very long time, BUT, the short of it is......... I FINALLY saw an attending physician Friday night and had a proper evaluation. GBS.....and this course of action quickly followed. I saw a neorologist that evening, had a spinal tap the following day and plasma fresse that evening. It was all done just in the nick of time. I had 2 more back to back, off a day then my last treatment on Wednesday. Wednesday...........I WALKED out of the hospital with little left over problems. This is Christmas day. 5 days after I left the hospital. The one thing that I am noticing is my short short term memory. I am really having to exercise it. At first it was.....did I take that tylenol.....or not. So strange to me. I'm having problems snagging words in my head in conversation. Normally, no problems with vocabulary usage. Word formage seems to be a bit of a problem now. But, a HUGE plus, I have little pain. I attribute that to my daily massage. I don't know about anyone else but narcotics didn't seem to respond to the pain. I pray that this stays gone. Those were the worst 8 days of my life. I understand that I am a very blessed soul to be able to say 8 days. Thank you God.

Guillain-Barre and chronic fatigue

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