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.
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.
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 _[removed]_m
-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
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
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 _[removed]_m
-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
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
I was diagnosed with GBS 16 months ago. I spent a month in hospital, had IVIG treatment, and have been doing physiotherapy ever since. I am still on several drugs and narcotics, but still experience constant pain. I too am suffering from fatique still. I have recently returned to work part time, working Monday and Wednesday, but find that I am exhausted by the second day. I am also plagued by short term memory loss. I work in a lawyer's office and am constantly afraid that I will mess up someone's file. At age 56 I am afraid that I will never return to work full time and that my family will suffer financially for the rest of my life. No one around me seems to understand the fatique or memory loss since I look normal and they have always been able to count on me.
I am not a medical professional, just a wife who has been along for my husband's journey with GBS. I think it is difficult even for medical professionals to tell patients if and when their experience with exhaustion and memory loss will abate. So many of the symptoms vary from patient to patient.
My recommendation to you would be: if you can afford it: stop working until you feel like you have conquered your bouts with exhaustion. Second: for your shorty term memory problems: learn to take precise notes about the important things that occur in your daily life. Work at improving your memory skills. There are several games online that you can use to assist you.
Good luck. Don't become discouraged and don't harbor your fears. Your family, economically will do what is necessary, even in this economy.
My recommendation to you would be: if you can afford it: stop working until you feel like you have conquered your bouts with exhaustion. Second: for your shorty term memory problems: learn to take precise notes about the important things that occur in your daily life. Work at improving your memory skills. There are several games online that you can use to assist you.
Good luck. Don't become discouraged and don't harbor your fears. Your family, economically will do what is necessary, even in this economy.
I was stricken with GBS in July of 2010. I have struggled with pain in my legs and fatigue till this day. Hope it doesn't last much longer
Hi there,
I am currently trying to find out more about this, as my daughter too has fully recovered from Guillain-Barre, however, not that she is back in her second year of university, she is completely struggling. She says she feels just plain dumb and she can't seem to retain any memory for her subject.
I am currently trying to find out more about this, as my daughter too has fully recovered from Guillain-Barre, however, not that she is back in her second year of university, she is completely struggling. She says she feels just plain dumb and she can't seem to retain any memory for her subject.
Edward, my husband contracted GBS in 1994. His case was described as "mild" by his neurologist. He was 50 when diagnosed. He still suffer with grave exhaustion and short term memory problems, But, please understand that every GBS paitent is different, and every recovery is different. Your daughter may fully recover in time.
Yes and when Get so tired the pain gets a lot worse
To begin, I am not a doctor or a medical professional. To provide you and perhaps your daughter's neurologist with pertinent information about Guillain Barre Syndrome, there is a national organization located in Pennsylvania. When my husband was first diagnosed, and for several years after his "recovery," the medical literature did not include grave exhaustion. Many professionals who are researchers and treating physicians now recognize grave exhaustion as a symptom for some GBS patients. I would recommend that you research GBS on the internet. I don't know where you live but there are many GBS support groups throughout the world. I wish you and your daughter luck and good health.
I contracted a severe case of guillane barre syndrome in 1993, since then I have suffered from chronic fatigue, and it is only since reading these articles that I have discovered that it is quite a common aftermath of the syndrome.
sorry to say, iv had chronic fatigue following guillaine barre for the past 24 years.....sorry....I wish your daughter well...
Georgi x
Georgi x
Hi. I am currently recovering from an episode of Guillain - Barre syndrome and I'm having difficulties with my short term memory. I am also constantly fatigued. I would love to know if you've had any breakthroughs with your daughters case.
Hi. I am currently recovering from an episode of Guillain - Barre syndrome and I'm having difficulties with my short term memory. I am also constantly fatigued. I would love to know if you've had any breakthroughs with your daughters case.
I too was diagnosed with GBS in 2011 and continue to experience fatigue and balance issues. Interestingly, I am a retired physical therapist (74) and essentially diagnosed myself.
Unfortunately, my weakness is poorly defined and I see no reason to pursue that avenue.
Unless the weakness is isolated to one muscle group or nerve distribution, I would advise walking and/or swimming.
Unfortunately, my weakness is poorly defined and I see no reason to pursue that avenue.
Unless the weakness is isolated to one muscle group or nerve distribution, I would advise walking and/or swimming.
I was struck down and have suffered the wrath of GBS. I was diagnosed 1/15/12. At the tiime I was three months pregnant with baby number six. I was put on IVIG treatment but went down hill quickly. Withing days my breathing stop, I went on a trach, my heart rate was sky high and my blood pressure was dropping. Needless to say I was losing the battle of GBS and the lights went out. Days later when I was starting to wake up from my body responding to treatment, I noticed that I could not move any part of my body; all I could do was blink. After being in the hospital for two months I was transferred over to a Rehabilitaion hospital where I spent three weeks working on getting my strength back. I went home after a three week stay in the rehab hospital but spent another six months doing therapy as outpatient. In July I gave birth to a healthy baby girl and suffered no complications. Today I can walk on my own and do the things I used to but I have to pass myself. I suffer from pain still and get tired very easily. I don't know what to look forward to with having such a sever case but I'm just taking each day as it comes.