Guillain-Barre and chronic fatigue

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.

 

Barista, I am a 60 year old male who had a case of relapsing GBS 18 years ago. I fully recovered from near full paralysis, but I still have serious limitations. For all intents and purposes, I have suffered from Chronic Fatigue Syndrome ever since with a full panoply of symptoms.
I have had many, many diagnostic tests including brain scans, blood tests for endless diseases, neurological workups, etc. Many have shown something (disrupted blood supply in the brain, elevated antibody levels for Epstein Bar's Disesse, for example) but none has been definitively diagnostic. However, the positive results as well as my symptomology lead to the inferential diagnosis of CFS. I suggest that your daughter receive a full CFS workup.
Treatment is very limited. There are no beneficial drugs per se. I have found that Vicoden is helpful, but I use it sparingly. The most effective course of action is lifestyle adjustment which can manage the disorder to some extent. There is plenty of information about lifestyle modification on the web, and some people have had success with Cognitive Behavioral Therapy -- a highly specialized form of counseling/biofeedback.
You might find it helpful to explore the website of the Chronic Fatigue Immune Dysfunction Syndrome Association at cfids.org/
Hope this helps.

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.

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

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. dojack wrote:

barista wrote:

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?

Barista, I am a 60 year old male who had a case of relapsing GBS 18 years ago. I fully recovered from near full paralysis, but I still have serious limitations. For all intents and purposes, I have suffered from Chronic Fatigue Syndrome ever since with a full panoply of symptoms.

I have had many, many diagnostic tests including brain scans, blood tests for endless diseases, neurological workups, etc. Many have shown something (disrupted blood supply in the brain, elevated antibody levels for Epstein Bar's Disesse, for example) but none has been definitively diagnostic. However, the positive results as well as my symptomology lead to the inferential diagnosis of CFS. I suggest that your daughter receive a full CFS workup.

Treatment is very limited. There are no beneficial drugs per se. I have found that Vicoden is helpful, but I use it sparingly. The most effective course of action is lifestyle adjustment which can manage the disorder to some extent. There is plenty of information about lifestyle modification on the web, and some people have had success with Cognitive Behavioral Therapy -- a highly specialized form of counseling/biofeedback.

You might find it helpful to explore the website of the Chronic Fatigue Immune Dysfunction Syndrome Association at cfids.org/

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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.

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.

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.

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.

[While traveling on a flight on Feb. 15, 2007 I felt strange feeling in my right leg. The following morning I noticed a very slight discomfort in my right leg but thought little of it. Two days later, I woke up to discover that my right leg was getting weak and walking was becoming difficult. Being Sunday, and fearful that I have had a stroke I went to the emergency room at a local hospital. An MRI of my brain indicated that I in fact did not have a stroke however GBS was diagnosed. After being examined by a
Neurologist I was hospitalized, administered high doses of intravenus meds and remained hospitilized for four days. Released from thr hospital on Friday, I returned on Saturday and Sunday as an outpatient for additional I.V. treatment. My right leg which was almost completely immobilized is now 75-80% 'normal'. I have begun PT and although the primary symptoms have dissipated, I feel physically exhausted, a condition that is associated with GBS. Simple physical tasks are challenging. I am 62 years old and in otherwise excellent health. When I was 19 years old I had mononucleosis.
The feeling of fatigue that I am now experiencing is reminicent of how I felt at that time. Given all the possible dynamics of GBS, I consider myself to be fortunate and am hopefull for a complete recovery

yes i can relate to all of the above symtoms & problems. it's 3 1/2yrs since onset of illness & i'm still in a state of fatigue etc the same. i've been sent for nerve conduction tests also because my legs still don't function normally eg can't walk up hills of stairs (no strength) without support of my hand. nerves in legs twitch & jump. no cause found so far.



it's all very frustrating & would especially be when it's a child that possibly doesn't understand to explain.



my d'rs have never said gbs is followed by fatigue ??? i don't think they really understand or know what i'm meaning when i try to describe it all.



good luck

Barista, regarding fatigue .... There was an article published in 2004 called "- The vexed question of residuals in Guillain Barre Syndrome - by:
Lawrence Kaplan and Robert J. Gregory"

Part of the article says the following :

Quote:

."(1) Steinberg also commented that patients might develop fatigue, particularly with sustained activity, and demonstrate poor endurance, even with normal muscle strength. This could lead to serious problems for those who worked long hours and/or had physically demanding jobs.

New Zealand researcher Gareth Parry added to our understanding with a thoughtful analysis of what appears to happen physiologically.(2,3) Based on recent research, Parry stated that a study of 83 patients found 80 percent experienced severe fatigue that interfered with their life. Also and significantly, these patients experienced fatigue that did not seem to decrease over time. Meanwhile, he noted that these people had relatively normal strength. "The basis . . . is probably axonal degeneration."(2) Further, he commented that, "surviving axons send out small branches called collateral sprouts that restore the nerve supply to those muscle fibres whose nerves have been damaged."(3)
Thus while strength to a muscle stays roughly the same, the nerves that are restored are less strong, and so the efficiency of the muscle is reduced, resulting in fatigue. In a recent presentation, Parry noted that "Residual effects from both GBS and CIDP are much more common than has been generally reported."(2)

Recently, New Zealand psychologist Cecilia Bourke noted that 93 percent of her sample of 44 persons who had GBS reported varying residuals.(4) She found that 38 percent were mildly, 50 percent moderately and four percent severely fatigued. Pain was reported by 66 percent, nerve tingling by 70 percent and reduced mobility by 77 percent of the participants. In addition, 84 percent claimed muscular weakness, while numbness was felt by 66 percent. Interestingly, a remarkable 39 percent of the 44 persons interviewed claimed to experience all seven of these symptomatic problems. This finding is contrary to the frequent assurances that, after initial acute phases of GBS, recovery is total. Given that Bourke found anxiety and depression were within a normal range as measured by psychological testing, the large number complaining of physical residual effects was surprising.

What exactly is taking place?
What may take place is that the myelin sheath in nerves and the axons themselves are damaged from GBS. Some of those wounds recover, heal and the person then gets on with their life. Some of the damage, however, does not heal, in particular the damage in axons. What may occur then is that relatively weak collateral nerves take over the transmission duties for nervous system messages. These alternative circuits through the nervous system have to do extra duty to replace the functions of the axons of nerves that no longer work well. Those collateral nervous circuits are simply not as strong or as resilient, and are simply not so capable as the originals.

Therefore, when a person with GBS-damaged axons and nerve tissue exercises, these collateral nerves are rapidly overloaded, and slow or even stop functioning fairly quickly. The person comes to a screeching halt -- a neurologically induced crash. Others may look at the person and say, "You are tired and exhausted and fatigued," thinking that it is muscles and overloaded muscles that will recover easily with rest. However, it is not the muscles that are faulty; it is nerves that are limiting functioning abilities. Thus there are significant and real differences in the cause and consequences of fatigue. Even those with GBS may believe they have tired muscles, for muscular tiredness is a common experience. That does not seem to be the case, however. The nerves just can't handle the extra exertion, and when stressed, they do not recover as quickly as muscles do. Tests for muscular strength show up just fine, for the muscles do work and are possibly or even probably stronger than in other people. But the nerves are rarely, or not tested, or suspected.

Some of those nerves affected are essential to lung function and breathing and that may account for developing shortness of breath. Even though individuals may experience this effect, they may not be able to explain it to their family, doctor or friends. These people have no experience other than muscular weakness, and therefore, they cannot understand that there are differences in cause and effects. That may be one reason why those who have had GBS are rather unique!

I was diagnosed 6 years ago & have been dealing with "chronic fatigue" ever since. They called it chronic fatigue because they couldn't explain it. I was originally told Guillian-Barre is a one-time thing, that I would never get again. But I have since discovered there is a chronic type also. I have had 5 relapses, with varying degrees of severity & length of recovery. I also have some memory loss. This did not happen before I got GB. So far, it's just little annoying things, like having to use the dictionary (a LOT) to find words I used to know how to spell, (this from a former spelling-bee champion) or losing my train of thought in the middle of a conversation, or even in the middle of a sentence. I now have a very short attention span, (which is as annoying to others as it is to me). I no longer go to movies, play chess, etc. because I'm bored to death within 20 minutes. It seems to get a little worse with each relapse. Hopefully, your daughter won't have them. Please be patient & understanding of the occasional emotional outburst. All of these "little annoyances" add up to become very frustrating! However, as the patient, and being aware of this, I make an extra effort not to be rude or act like a jerk. (With moderate success - haha.) I hope some of this has been helpful.

My husband became disabled in 1994 with Guillain Barre Syndrome. He also had a moderate case but he also suffered 40% nerve damage. He has never returned to full time work and his is still strapped but grave exhaustion. His memory has also been impaired, both short and long term.
My experience has been that many neurologists are unaware of the variety of ways that guillain barre syndrome can affect a specific individual. Symptoms that afflicted my husband and judged by his neurologist as not being a symptom of GBS, has over the years been identified as a GBS symptom.
I assume that your daughter is young. My husband contracted the disease at age fifty and how this syndrome will affect his life in the future is uncertain.
Good luck and let your daughter travel through life at her own pace.