Focus on Post-GBS residual symptoms:
a patient-to-patient resource
updated
14-Feb-2006
Readers comments & Real-life problems
For Danish-language readers
Suggested further readingMany GBS/CIDP/MFS.. patients report suffering from various residual symptoms for some time after having had GBS. This website seeks to collect information relating to "Post-GBS residuals":
- problems and experiences of other GBS-patients
Reassurance that others experience similar physical, psychological and emotional issues.- solutions shared on a patient-to-patient basis
Real-life solutions that have worked for others with similar issues, and that you may want to consider.- issues that GBS-patients feel warrant increased awareness from health care providers and researchers
In your email, please note when you had GBS/CIDP/..., describe residual symptoms or relapses you have suffered since then
and tips or treatment leading to relief.
No responsibility is taken for damage resulting from readers' use of advice or products published here, see 'Terms of Use'.
---------------Several patients report that amytriptyline helps them to calm restlessness and help them sleep. Others report that quinine helps leg cramps and twitches. If youhave restleess legs syndrome, Clonazepam may be the solution you require. Please report any new symptoms to your doctor as well as your neurologist, as they may have bearing on your GBS condition.
Webmaster
02.2006--------
Greetings from the heartland of America. I am Terry, GBS in progress. I am writing because the length and constant struggle with this condition is wearing me down. I wonder if others have traveled a similar path.
My story begins with a progression of burning, sensitive, iritated
sensation under my skin that spread throughout my upper body and arms over several weeks time in early Spring of 2005. I noticed my balance was off.
Then over a few months time more problems presented themselves. My hands began to tremble and tremor, my ears began ringing, tingling in my left foot and the little fingers in my hands increased, muscle spasms appeared, and muscle weakness and pain grew in my thighs. My speech became jumbled and my left pupil dilated.I went through draconian testing with a host of doctors, including one of the top neurologists in the area. This resulted in a diagnosis of GBS. There was relief in knowing this and having hope for a healthy future. The doctors indicated the recovery could be long and difficult. Their words have proven prophetic.
Over the ensuing months, some things have improved. The burning skin has gone, the hand trembling has gone, the speech is normal, and my balance has gotten somewhat better. On the downside, my leg muscles are shot, I get quite tired at the end of each day, there's a wheezing in my throat, and the muscle spasms and tingling continue. I try to live my life as normally as possible. My sister is a nurse who has done much research on the subject to help me along the way. Sites such as this also help. If there is any advice on what might facilitate a faster recovery, I would be most appreciative. Good luck and best wishes to all afflicted with this condition and those who love them.
Terry
Indiana, USA
12.13.05Webmaster: Hang in there Terry, you may not notice it but your nerves are healing. Very slowly, but things should be going in the right direction. Have you considered consulting a physical therapist for those leg muscles and tiredness? They might also help on the muscle spasms. Other suggestions are welcome - please email me and I will pass them on to Terry, thank you.
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My case began with a dreadful feeling of listlessness.
There was absolutely no pain involved but the weakness progressed to the point where I could not make my legs go up one stair.
For three months the malady was misdiagnosed as a virus. The blood tests revealed a rise in white cells. I did go to a physio therapist and underwent all the treatments they could administer including Acupuncture.By the time I had lain in bed for practically all that time, I finally was referred to a Neurologist who determined that it was, indeed, GBS. He referred to it as a "mild" case which was ironic as by that time I had recovered to a great extent on my own.. forcing myself to go upstairs and use my limbs as much as possible.
It is difficult to describe the deadly fatigue I experienced. Loss of weight naturally ensued as I barely had the energy to eat.
When I did begin to walk, my legs swung out in an awkward fashion akin to the gait of a person suffering from MS. I know the two diseases are related and that was a frightening development. However, with a concerted effort to use my legs and encouragement from family and friends I began to correct this.
It is unfortunate that in spite of many medical visits, I actually received no help whatever from doctors and specialists.My syndrome began 5 years ago and to this day I have limited use of my arms for extended periods of time and what appears to be carpal tunnel in my one wrist. If I extend my right arm back for any length of time, it feels like it will lock in that position.
Other than these problems, I have made a full recovery.
Lynda
11.2005Webmaster: Lynda, congratulations on beating the syndrome! It must have been a very scary experience. Hopefully, medical personnel have more experience and knowledge in dealing with this condition today. Have you considered consulting a physical therapist to find out if you could benefit from this?
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Thank you for this site. Every once in awhile I have checked to see if anyone was writing about GBS and I feel blessed to have found you this am. I experienced GBs in 1991. After spending 4 weeks in ICU (fortunately without a trach or respirator) I was released to the general floor for 2 weeks then spent another 4 months in a Rehab facility. My physical therapy lasted about 6 monhts. Even though it has been almost 14 years since the onset I still have poor balance, I am fatigued easily and continue to feel exhausted after minor activity. Because I feel pretty normal and look pretty normal I believe that my family doesn't believe me when I complain of exhaustion. After participating in limited activity ( grocery shopping, church, a meal in a restaurant, washing dishes, sweeping, vacumming & other little things) I must take to the bed. It seems as though for every hour I spend on an activity it takes me 2-3 times that to recover. It seems as if I am on a constant treadmill pushing myself to perform tasks that leave me feeling inadequate.Sometimes I have wondered, as I am sure my family wonders, if I am imagining fatigue. It brings tears to my eyes just thinking about it. It took me 3 days in bed to recover from cooking a Thanksgiving meal. I'd like to know if others are feeling what I have been feeling. I feel permanently disabled even though I don't like to admit it. Last year I began teaching part time and feel like a dead man walking after a 50 minute class. My memory nor my critical thinking skills seems to be improving...that me be old age but it feels like since GBS my head isn't as clear as it used to be. Anyway, would love to hear from others.
Mary
10.2005Webmaster: Mary, please see the post below - you should think about seeing your neuro and discussing the situation to see if something can be done. Let me know if you'd like to correspond with Ashley, you might be able to help each other.
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My name is Ashley and I am 22 years old and live in the United States. I was diagnosed with GBS just this past March (2005). I was one of the blessed ones considering what happened. I am just trying to understand a few things which is why I am writing this. I had been tired and run down for almost two years before the onset of GBS attacked me. I went to a local hospital and they told me I was fine and that I was just nervous and then proceeded to give me a shot of benedryl and then told me to go home. Finally my mom took me to see a nurse practitioner and she told me that there was something wrong with my nervous system. To make a long story short I went through a long line of doctors and nurses telling me either they didn't know what was wrong with me or that I was making it up before I finally found a neurologist who told me I had GBS. Anyway I couldn't walk on my own for about a month and a half because my legs weren't working properly. It is now October almost eight months have passed since I was first diagnosed. I am currently unemployed and simply going to school; however, that seems to be taking a lot out of me. It's hard to walk and my feet and legs still get very cold and very swollen. I cannot hardly lift a thing. I'm constantly on edge because of my nerves, and I'm so very tired all of the time, but the only thing I'm doing is going to school. All I want to do is sleep or lay down because I seem to be in a constant state of exhaustion. I am worried because I want to have a normal life again, and my doctor suggested that I exercise everday and I have, just not too much. I get up and walk quite a bit everyday because of my classes at school, but that simple action has me tired and unfocused. I'm thinking about going to the doctor again to explain my symptoms to him, and see if he has any suggestions. Currently I need help, once again, to walk or to simply move from one place to the next, ex : couch to bathroom. Are there others like me? Are there others who continually have problems like this? My hair hardly grows on my legs anymore and they are akward, as it's like having a toddler's legs, uncoordinated and shaky. I guess the plus side is that I don't have to worry about shaving my legs as often, but I am worried about leg problems as a result to this. What can I do? It's very frustrating, but I do count my blessings that I am alive and can still see, eat, hear, and talk. I can't help but feel like a burden to my family sometimes. I just want to know if I will ever have a chance for a normal life and if others months later, after being diagnosed with GBS, have the same problems as I do. Any help or answers you can give me would be great.
Ashley Pasco,
USA, 22, Female
10.2005Webmaster: Ashley, please see your neurologist soon and mention all of this. Your situation does not sound normal, and as your neuro has your case history, he/she can check your symptoms out against the case history and see what can be done.
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Hi, my name is Ivan and i am from Mexico. I had the syndrome when i was 8 or 9 years old and I fully recovered, i think. Sometimes i get these strange pains in my legs that I control with aspirin, but i need to know if its a scar left by this syndrome. If you can contact me with some answers at this email i would be very appreciated.
Thank You
Ivan Martinez
manovashotty(at)hotmail.com
01.2005------
I had guillain-barre when I was 6 years old in 1958. I joined the guillain-barre foundation in 2000. I was so happy to learn that there were others out there who had this disease. I recently returned from the 8th symposium and met many others who had the disease.
I am 52 years of age now and experience extreme fatigue. I look back over the past 46 years and I realize i have been putting on a facade as far as my ability to keep up and be "normal". I don't think my life was ever normal again after having gbs and I never regained the energy level I should have had. I wonder if they know if there is long term damage to the nerves? Could it be possible that the myelin does not fully repair itself. I just know my life has been full of anxiety and feeling like my nerves were always on edge, but have no way of knowing if it is from having this disease at the age of 6. In 1958 they did not have all the treatments that they have now. There was no ICU, no respirators (we had the iron lung machine), no counseling by a psychologist as you were coping with this illness. It was pretty devastating as a child to have it and I knew it was serious and that I almost died.
I wish I could have found out more about this disease at an earlier age. Once I recovered, no one in my family talked about it much, but as I got older i had so many questions about it. I think it is wonderful there are so many websites now regarding GBS and that people are able to find out about it and join support groups.
Debbie
12.2004------
The New Zealand Support Group published the recipe for "John Preckshot's Neuropathy Foot Cream" in its December 2003 newsletter. I decided to publish it here too, please consult your physician about whether this product is appropriate for your condition before using it!
"This is a recipe that has been around for a long while now. Many have found it to be helpful. See your pharmacist and ask for prices as it has to be made up, and does not come already prepared:
2% Amitriptyline
2% Baclofen
In a transdermal gel.
This cream needs to be prepared by a compounding pharmacist. It is used sparingly 3-4 times a day. It is absorbed very quickly into the central nervous system and is good for any area of neuropathy pain if applied to the offending area".Webmaster
12.2004------
I was hospitalized with GBS on May 23, 2002.
I was fortunate enough to arrive at the ER when I did as I only lost feeling from my waist down. Therefore I feel quite fortunate that a respirator wasn't required. I did however receive 5 plasma pheresis treatments during my hospital stay.
After about a week after leaving the hospital I returned as an outpatient for more treatments. Two weeks after that I again returned as an outpatient for 5 more treatments. Four weeks after that I again, came back for more treatments. I later consulted with my doctor and we decided to start on the IVIG treatments at home. I had hoped that by now I would be off all medicine but unfortunately it seems that the medicine only lasts 4 weeks or so.The depression I've experienced throughout this ordeal has been horrific. I am no longer working at my old job as they eliminated my position a few months ago. Fortunately I am not wheelchair bound however some days it seems as if I could use one. I have very little strength in my legs, feet, hands and arms and I'm hoping with physical therapy that I'll be able to gain some back.
My biggest complaint is that I can not stand for a long period of time, my feet and legs experience great pain and want to give out. My hands and feet are an ugly color of blue most of the time and ice cold as well. I'm hoping that this will get better soon so I can get on with my life!
HL
06.2003-------
Foot pain: see the comment of a sufferer in "Foot pain that is constant". Other sufferers responses can be read below it.
Sharon
06.2003-------
I had gbs back in the early sixties and very little was known about it at that time. I have been left with a severe foot drop and weakness.
I would love to know what it would feel like to walk normal and not have people stare. Is there anything medically that can be done to correct my foot drop. I currently wear the support brace (apo) around my ankle. It helps but is still noticable. Anything you can suggest or point me to in the right direction, I will be greatful.
Helen Rogers
06.2003-------
Reply to Arlene's email, see below:
Arlene,
Yours comments are the first I've seen pertaining to complaints of the mouth (your husband's, that is). While I have no sensations in the throat, my mouth has been a real bane.When I was in the hospital (Feb. 12, 2001 to Nov. 30, 2001), the tongue seemed too big and I "searched" for a comfortable place to rest it. While I don't have that problem now, I still bite the tongue more frequently than before GBS.
The tongue prevents me from forming all words nicely. The neurologist kindly describes my slur as a "labial lisp." I can no longer sweep my teeth with the tongue to search out food particles.My teeth have a scummy feel to them even after being cleaned
professionally. When I asked another patient at the hospital who had experienced GBS years earlier if his teeth felt unclean, he said they still felt like they were wearing sweaters. These phantom feelings are caused by the tongue's nerve damage, I think.
The only time my mouth feels normal is when I am eating or chewing gum.All these complaints seem frivolous in light of those who are in pain and disabled, but they are constant reminders that I am very different after GBS. Even my compromised hands are not as annoying.
I'm sorry I can't be of help to your husband, but I wanted him to know others have strange sensations in the mouth.
Best wishes,
Suzanne Goodwin, age 64,
Encino, California, USA
05.2003-------
I'd like information on the problems that I'm continuing to have as a result of GBS (acute inflammatory neuritis, autonomic dysfunction, etc.) I guess I'll always need IVIG the rest of my life?? What if I want to have a child and still need medicine? Any support groups in my area: Westlake Village, CA.
Thanks,
Heather
05.2003-------
I was glad to find your web site. My husband (GBS 6/00) has a question regarding heightened sensations in the throat and mouth. He is unable to swallow and has annoying sensations that he describes like a "plastic scrubber stuck in his throat". His doctors have no recommendations and I've seen little of this mentioned. I thought there was an article in the "Communicator" newsletter but have been unable to find it on their site.
Thank you for your assistance.
Arlene
04.2003
Top
I din mail, venligst notere hvornår du har haft GBS/CIDP/..., beskrive dine restsymptomer siden da, samt medicinsk eller andet behandling som har ført til lindring af disse.
Der tages ingen ansvar for skader resulterende fra læsernes brug af råd indeholdt på disse sider. Konsultere din læge før du ændrer eller supplerer den medicinsk behandling. Se 'ansvarsfraskrivelse'.
---------------Jeg hedder Mikkel Wilsdahl, 33. Jeg var lammet med gbs vinteren 01-02, indlagt ca.10 uger, først på OUH siden på Ringe Sygehus, hvor jeg gik til genoptræning ca. 4 mdr. ambulant. Har været i arbejde som handicaphjælper med kun ganske få sygedage siden, mest for alm. hoste og forkølelse.
Jeg har set din efterspørgsel for postsymptomer og her er nogle, hvor jeg netop har sygedage på grund af muskelsmerter i ryg,lænd, skuldre og arme.Jeg oplever muskelsmerter som følge af meget stramme muskler. Der skal ikke så meget til for at mine muskler bliver ømme og smertene, samt stive, som da jeg spillede meget fodbold i mine yngre dage og jeg ikke fik strukket tilstrækkeligt ud.
Når jeg på en helt almindelig dag ligger mig på ryggen på gulvet og lader armene falde ud til siden, så kan jeg ikke gøre det uden at det river voldsomt helt ud i fingerspidserne og det kræver tålmod at slappe af.Jeg har ikke mere snurren og sitren, som jeg dog kunne opleve mange måneder efter jeg var raskmeldt, hvilket var meget psykisk belastende - "kommer det nu igen"? Det kunne sagtens holde mig søvnløs og angst, men min kone insisterede på at det ikke kommer igen og hendes tro giver ro.
Jeg bliver meget hurtigere udmattet ved gentagne eller statiske bevægelser. Der ophobes en knugende, sviende/brændende smerte samt træthed f.eks i de store rygmuskler eller lænden. Jeg har også meget ondt i hofte musklerne, faktisk alle muskel-grupper. Men der er altså forskel på muskler der udsættes for "stress" og så den helt almindelige daglige smerte fra sygdommen, som stadig svagt falder i intensitet med tiden.
Det er tydeligt at mærke at nervesignalerne til og fra musklerne må være svækkede, hvilket giver symptomerne af mælkesyre, træthed og "for korte muskler".
Jeg går til noget aku-pressur en gang i mellem, når smerterne sætter sig i armene (tennisalbuer). Massøren er overrasket over hvor "benet" og knudret senehæfterne er og han er chokeret over mængden af muskler der er påvirkede, for det er alle.Umiddelbart lever jeg et helt almindelgt liv, som før, men jeg er altid i min krop og føler og mærker efter og jeg lever med smerten altid. Jeg drømmer om den medicin eller behandling, der får mine muskler til at slappe af som efter et varmt karbad. Måske eén dag?
Nå, men meningen var at jeg ville gøre det kort, men det er svært at stoppe når jeg først kommer igang. Har tit tænkt på at deltage i debatten, men har også lyst til at "lade det gå".
Du skal have alverdens tak for dit arbejde. Jeg tror ikke at jeg kunnet have klaret det uden din hjælp. Det hjalp alle -familie, venner, personale og jeg selv. Tak fra hjertet!!Mikkel Wilsdahl
05.2005
The vexed question of residuals in Guillain Barre Syndrome
Lawrence Kaplan and Robert J. Gregory
"..it is important to really listen to GBS patients, whether in an acute stage, or throughout the rest of their lives... The continuing pains, aches and fatigue that those who have had the disease report are real, and should not be lightly dismissed or ignored..."Fatigue following Guillain-Barré syndrome
Gareth J. Parry
".. many of my patients have complained.. of persistent symptoms that continue for years after the initial paralytic event and that significantly detract from the quality of life.."Pushing patients beyond fatigue wears them out
Dr. Joel Steinberg
"...Dr. Steinberg has suffered from GBS and is therefore personally familiar with the phenomena of fatigue..."Electrophysiological signs of permanent axonal loss in a follow-up study of patients with Guillain-Barre syndrome.
Dornonville de la Cour C, Andersen H, Stalberg E, Fuglsang-Frederiksen A, Jakobsen J. Muscle Nerve. 2005 Jan;31(1):70-7.
Axonal loss occurs in a substantial number of GBS patients and is associated with permanent muscle weakness caused by insufficient reinnervation.Residual neuropathy in long-term population-based follow-up of Guillain-Barre syndrome.
de la Cour CD, Jakobsen J.
Neurology. 2005 Jan 25;64(2):246-53.
Residual neuropathy affecting large- and medium-sized myelinated fibers endures long after the acute attack of Guillain-Barre syndrome in approximately half of all patients, leads to motor and sensory dysfunction, and shows a trend toward impairing self-reported physical health status.Impairment in Guillain-Barre syndrome during the first 2 years after onset: a prospective study.
Forsberg A, Press R, Einarsson U, et al..
J Neurol Sci. 2004 Dec 15;227(1):131-8
"..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..."Disability After "Recovery" From GBS
Kleopas A. Kleopa, Mark J. Brown
" ... Most research on GBS has focused on understanding the cause and finding better treatments. Much less attention has been paid to the long-term disability caused by GBS. In addition to the previously mentioned residual weakness, there may be pain, fatigue, psychosocial dysfunction, possible relapses of the illness, and late progression of weakness..... "Residual Effects Following Guillain-Barré
Gareth J. Parry
" .. Although I have made no systematic study of the proportion of patients with these residual complaints it is certainly more than the 15%-25% that the figures in the literature would suggest..."Outcome after Guillain-Barre syndrome: comparison of motor function status and changes in social life. [Article in Japanese]
Nagashima T, Nishimoto Y, Hirata K, Yuki N.
Rinsho Shinkeigaku. 2004 Jan;44(1):50-3.
"..GBS patients may have serious psychosocial outcomes that are not measurable by the usual physical assessments.."
Long-term impact on work and private life after Guillain-Barre syndrome.
Bernsen RA, de Jager AE, Schmitz PI, van der Meche FG.
J Neurol Sci 2002 Sep 15;201(1-2):13-17
".. Due to GBS, 38% of the patients who held a job had to change it, 44% altered their leisure activities, 37% of the patients did not function as well at home as before GBS and 39% reported a change in their partners' lives. Almost half of the patients still had negative comments on their present psychosocial situation.
CONCLUSION: GBS has a serious long-term impact on the patients' work and private life and that of their partners."Long-term sensory deficit after Guillain-Barre syndrome. Bernsen RA, Jager AE, Schmitz PI, van der Meche FG.
J Neurol. 2001 Jun;248(6):483-6.
3-6 years after onset of GBS "... many patients still suffer from sensory deficit, and a considerable number experience these as moderately to seriously disruptive, especially in the legs. Muscle aches and cramps seems to be related to sensory rather than motor dysfunction..."Residual physical outcome and daily living 3 to 6 years after Guillain-Barre syndrome.
Bernsen RA, de Jager AE, Schmitz PI, van der Meche FG.
Neurology. 1999 Jul 22;53(2):409-10.
"..Three to six years after onset of Guillain-Barre syndrome, 63% of 122 patients showed one or more changes in their lifestyle, work, or leisure activities, or in the life of their partners..."
Residual health status after Guillain-Barre syndrome.
Bernsen RA, Jacobs HM, de Jager AE, van der Meche FG.
J Neurol Neurosurg Psychiatry. 1997 Jun;62(6):637-40.
"...in many patients with Guillain-Barre syndrome, psychosocial functioning is still seriously affected, even when they have physically recovered, or show only mild residual signs.."
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Jsmarcussen.com/gbs takes no responsibility for any errors, omissions or misinterpretations. These pages should be used for information only and you are strongly advised to seek professional help particular to your circumstances. For more information, please visit the website http://www.jsmarcussen.com/gbs or e-mail jsmarcussen@mail.tele.dk
