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 Posted: 02/28/07 - 11:12 Post subject: Re: Guillain-Barre and chronic fatigue |
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[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 |
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| Posted: 04/01/07 - 07:16 Post subject: Re: Guillain-Barre and chronic fatigue |
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| 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? |
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 |
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AliWills
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Joined: 04 May 2007
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| Posted: 05/04/07 - 21:51 Post subject: GBS fatigue explained |
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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! |
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Kris13
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| Posted: 10/16/07 - 11:30 Post subject: Guillian-Barre & fatigue |
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| 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. |
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allenels
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| Posted: 11/18/07 - 21:27 Post subject: Guillain Barre Syndrome |
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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. |
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allenels
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| Posted: 11/18/07 - 21:41 Post subject: Guillain Barre Syndrome |
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My husband was afflicted with Guillain Barre Syndrom in 1994. He had a moderate case because he was never admitted to a hospital. Much of what we experienced in the early months of his illness wasn't clearly explained by his neurologist. In fact, my husband's neurologist took note whenever we visited him for a medical update,
My husband still sufferes from grave exhaustion even after all of these years. If he doens't nap during the day he is miserable and has difficulty sleeping at night. He also has problems with his memory, shorty and long term.
All neurologists, like all doctors are not equal and do dot have equal knowledge about Guillain Barre. There is a national Guillain Barre Foundation in Philadelphia and we have found their newsletter to be very helpful over the years. Many of the symptoms that my husabnd has experienced and was refuted by his neurologist, has over the years been verified as symptoms that individuals may suffer.
Good luck to you and your daughter. I believe that your daughter is much young than my husband when he contracted the syndrome; he was 50. The future for us is uncertain because no one really knows what happens to elderly Guillain Barre patients. |
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Rocker49
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| Posted: 01/17/08 - 18:29 Post subject: |
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I am post GBS 11 years and still have residuals. The most predominant is fatigue. The knowledge related to this disease is limited, but research continues. I estimate 30,000 people in the US are dealing with residuals related to GBS, which is tiny when compared to major diseases. Rare neurological disorders are placed on the back burner.
Here are some research links related to fatigue and GBS. I hope they might provide some insight. If you find other research papers related to this subject please e-mail me at rocker@woh.rr.com
-Understanding Guillain-Barré syndrome and central nervous system involvement. Recognition is growing that recovery is not as smooth and free of symptoms as previously thought. Following "recovery" some people endure long-term residual symptoms, such as fatigue and pain.
http://www.ncbi.nlm.nih.gov/pubmed/16175926?ordinalpos=13&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Residual fatigue is independent of antecedent events and disease severity in Guillain-Barré syndrome. Severe fatigue, expressed as a mean Fatigue Severity Scale (FSS) score of 5.0 or more, was present in 60% of all patients. It was more frequently present in females and in patients over 50 years (p < 0.01). There was no significant relationship between fatigue severity and the level of functional disability at nadir, antecedent events or infections, clinical variables, and time to follow-up after GBS.
http://www.ncbi.nlm.nih.gov/pubmed/16998652?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Nerve conduction studies in relation to residual fatigue in Guillain-Barré syndrome found "No correlations were found between the electrophysiological findings and the fatigue scores,muscle strength, or functional scores. "
http://www.ncbi.nlm.nih.gov/pubmed/16845568?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Fatigue in immune-mediated polyneuropathies. European Inflammatory Neuropathy Cause and Treatment (INCAT) Group. RESULTS: "Severe" fatigue (FSS scores > or =95th percentile values in controls) was present in 80% of the patients. Fatigue was not significantly related to general strength, sensory deficits, f-score, and duration of symptoms. Severe fatigue was reported in 81% to 86% of patients with normal strength or sensation. Eighty percent of the patients (controls, 12%) reported their fatigue being among the three most disabling symptoms. CONCLUSION: Fatigue is a major symptom in patients with immune-mediated polyneuropathies and may persist for years after apparent recovery. The Fatigue Severity Scale seems appropriate for assessing fatigue in these patients because good internal consistency, reliability, and validity were demonstrated.
http://www.ncbi.nlm.nih.gov/pubmed/10563607?ordinalpos=27&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Conduction velocity distribution in neurologically well-recovered but fatigued Guillain-Barré syndrome patients.Conventional maximal nerve conduction velocities (NCVs) did not show differences between GBS patients and healthy controls. However, in both GBS and CIDP patients the CVD was altered, showing significant narrowing of the velocity distribution with loss of the fastest- and slowest-conducting fibers. These changes were most pronounced in the subgroup of patients with the lowest fatigue scores.
http://www.ncbi.nlm.nih.gov/pubmed/16270305?ordinalpos=12&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Impairment in Guillain-Barré syndrome during the first 2 years after onset: a prospective study.CONCLUSIONS: Recovery occurred mainly during the first year after onset. At 2 years, motor impairment and sensory impairment were each still detectable in more than 50% of patients. We conclude that residual impairment is significant, somatically widespread and, likely, persistent.
http://www.ncbi.nlm.nih.gov/pubmed/15546603?ordinalpos=19&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Fatigue and neuromuscular diseases. CONCLUSION: This review shows that fatigue has to be taken into account in patients with neuromuscular diseases. In this context, pathophysiology of fatigue often implies the motor component but the disease evolution and the physical obligates of daily life also induce an important psychological component.
http://www.ncbi.nlm.nih.gov/pubmed/16780988?ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Fatigue in immune-mediated polyneuropathies. European Inflammatory Neuropathy Cause and Treatment (INCAT) Group.
-Clinical neurophysiology of fatigue. More than 60% of all neuromuscular patients suffer from severe fatigue, a prevalence resembling that of patients with MS. Except for several rare myopathies with specific metabolic derangements leading to exercise-induced muscle fatigue, most studies have not identified a prominent peripheral cause for the fatigue in this population.
http://www.ncbi.nlm.nih.gov/pubmed/18039594?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Analysing the favourable effects of physical exercise: relationships between physical fitness, fatigue and functioning in Guillain-Barré syndrome and chronic inflammatory demyelinating polyneuropathy.CONCLUSION: Changes in fatigue, actual mobility and perceived functioning seem not to be influenced by changes in physical fitness. This study stresses the presence and importance of additional effects of a physical training program, not directly related to increasing fitness.
http://www.ncbi.nlm.nih.gov/pubmed/17351693?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Amantadine for treatment of fatigue in Guillain-Barre syndrome: a randomised, double blind, placebo controlled, crossover trial. CONCLUSIONS: Amantadine was not superior to placebo. Because fatigue remains a serious complaint, other studies evaluating new treatment options are strongly recommended.
http://www.ncbi.nlm.nih.gov/pubmed/16361594?ordinalpos=11&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
-Clinical neurophysiology of fatigue. As regards neuromuscular disorders, fatigue has been reported in patients with post-polio syndrome, myasthenia gravis, Guillain-Barré syndrome, facioscapulohumeral dystrophy, myotonic dystrophy and hereditary motor and sensory neuropathy type-I. More than 60% of all neuromuscular patients suffer from severe fatigue, a prevalence resembling that of patients with MS... The reliability of the psychological and clinical neurophysiological assessment techniques available today allows a multidisciplinary approach to fatigue in neurological patients, which may contribute to the elucidation of the pathophysiological mechanisms of chronic fatigue, with the ultimate goal to develop tailored treatments for fatigue in neurological patients.
http://www.ncbi.nlm.nih.gov/pubmed/18039594?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
Physical training and fatigue, fitness, and quality of life in Guillain-Barré syndrome and CIDP. The authors performed a 12-week study of bicycle exercise training in 20 patients with severe fatigue, 16 with relatively good recovery from GBS, and 4 with stable CIDP. Training seemed well tolerated, and self-reported fatigue scores decreased 20% (p = 0.001). Physical fitness, functional outcome, and quality of life were improved.
http://www.ncbi.nlm.nih.gov/pubmed/15623709?ordinalpos=17&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum |
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