I am currently experiencing a re-flare following my initial attack of GBS back in June 2014. I was almost completely recovered when I suffered a sinus infection a month ago. Then, my symptoms started coming back on over the next few weeks. My Neurologist believes that I just need more time for recovery and does not feel this is chronic. I am basically winging this with prescribed supplements and an anti-inflammatory.
Yesterday I made it through a nine hour work day but after 4 hours became extremely exhausted and the nerves throughout my body felt like they were quivering uncontrollably but my body was not visibly shaking. I took a nap when I got home but this did not help. This morning after a pretty good sleep they are quivering terribly and I feel completely exhausted. This does not feel like anxiety because my hands are not shaking and I feel calm inside - no heart racing. But I feel tired beyond tired.
I don't remember how this was for me initially as my symptoms were so bad that I was focusing on the fact that I could barely walk or stand. I know that I felt so horrible for 3 to 4 months. This time I can walk and drive but I am having more trouble walking at this point. Did I just over do it? Anyone's body quiver like this?
Maybe you just overworked... Try to rest some. Sometimes, it may take a few days for things to return to normal.Rest and eat healthy, lots of water, give it a bit of time, and you should start to improve again. Good luck to you!
I am 12 months in with GBS & go to the gym everyday. When I go on the elliptical machine for 45 minutes I feel better for a few hours, but on the days I weight train my pain is much worse. I do not have quivering, but I have burning & pins & needles in my arms & legs that keeps getting worse. In the evening it is almost unbearable. I am on Neurontin 2400mgs a day & have tried every other drug for nerve pain with no help. Does anyone have burning pain at 6 to 12 months into GBS? I do not have the chronic form of GBS.
It took me almost two years to fully wean from the Gabapentin, even so, at 30 months out, I still get significant nerve pain when I've overdone it or when I'm tired. I've learned to listen to the pain and when it starts up to get rest. It is the only thing that ends up helping me in the long run. While I don't take Gabapentin any longer - which I'm really glad because it made me feel foggy - I only take Ibuprofen or Tylenol to manage the pain. It never goes away completely, but helps. Just remember that this is a long long term recovery and that everyone will have different issues and challenges.
Hi Elaine: Have you recovered all of your motor skills & physical abilities & if so, at what time did you recover full motor ability. Did you have any muscle atrophy where you had the most significant pain & did they recover immediately after the pain went away.
Elaine said:
It took me almost two years to fully wean from the Gabapentin, even so, at 30 months out, I still get significant nerve pain when I've overdone it or when I'm tired. I've learned to listen to the pain and when it starts up to get rest. It is the only thing that ends up helping me in the long run. While I don't take Gabapentin any longer - which I'm really glad because it made me feel foggy - I only take Ibuprofen or Tylenol to manage the pain. It never goes away completely, but helps. Just remember that this is a long long term recovery and that everyone will have different issues and challenges.
I have recovered most functionality, but not endurance and I have some limits in range of motion. My Dr says that the stuff that hasn't come back likely will not at this point, but I can function pretty well with those limits. For instance, I had the Miller Fisher variant and I still have problems with some of the nerves in my face, especially those that move and focus my eyes. I had some small atrophy in my larger muscles, legs, arms, etc. but that recovered pretty quickly once I was able to do PT. The pain has never gone completely away and I'm guessing that it won't at this point. But it has gotten to the point that I've learned how to live with it.
Hi, I think it is very important to remember that the recovery period of GBS is anything from THREE to FIVE YEARS, so you are still in the relatively beginning stages. Listen to your body and don’t push its limits. Heavy exercise is not good for recovering neuropathy. These myelin sheaths have been severely damaged and take So long to heal. I am two years and 4 months since the onset and only really see improvement now. The burning/pain/quivering is still there but so much less. So whilst the recovery is very slow, it is happening. Listen to your body and rest when it tells you. Eat lots of protein. It helps with the quivering. Wish you a speedy recovery! Regards, Jacqui
Hi. We're about the same amount of time into this thing, my symptoms started 7/14 and I was hospitalized within 8 days. I can relate to the quivering you mentioned. I recall feeling nerve vibrations in different spots of my body, then I developed a tremor in October of 2014. This tremor has gotten progressively worse, and its not just my hands shaking, I can feel it throughout my entire core. My neurologist said its an essential tremor and that its something I inherited, not related to the GBS! I don't know about that, but I did just begin taking beta-blockers. Yesterday was my first day on them, I'm not into meds but this feels so comforting and I hope it works. Good luck with you symptoms and healing.
I did not realize that recovery could take that long-three to five years. I was pushing myself pretty hard to get back on track following my initial attack. Just curious if you have had re-flares at anytime during your recovery especially with illness. Already started increasing my protein intake!
Yes, this I was told at the onset 2 years,4 months ago and this is proving true. The recovery is definitely taking place, but very slowly. The damaged myelin is the longest healing tissue in the body, but it does regenerate. I never ever get sick, not even a cold for two and half years! I was prescribed a VERY strong form of vitamin D called CALCIFEROL. 50,000 iug. I take one only once a week and have been on this since the very beginning. It keeps all other illnesses away! Try to get this. Not sure whether you can get this in your country, U.S.A.?? I am from South Africa and It is only available on Dr’s prescription here. It works brilliantly. The quivering is so much better but only now. It was so bad that it would go up into my throat and I would want to throw up. It only gets bad when I push myself, hence I said not to over excercise. I teach ballet…crazy I know, but it takes me away from my pain. I just don’t jump around like I used to!! I also have cortizone injections every 3 months. Bad to have them sooner.it helps so much. I am not on any other medication. Only made me worse. I tried to manage the pain with pain killers, but don’t even need them now. They all mess with my tummy. Be patient with your body and listen to it. You must rest when it tells you. G-d bless you with a speedy recovery. Jacqui
said:
I did not realize that recovery could take that long-three to five years. I was pushing myself pretty hard to get back on track following my initial attack. Just curious if you have had re-flares at anytime during your recovery especially with illness. Already started increasing my protein intake!
My neurologist said that the average GBS case is about 1 year & I have also read this, but I am in my 12th month & still have significant burning in my arms, hands & legs. I workout at the gym 6 days a week & am wondering if this might be exacerbating the burning. I have worked out like this all my life & have made significant gains these last 12 months. It is a real catch 22 situation. These last few months I decided that the gain of working out both weight training & aerobically significantly outweigh the pain, except for yesterday when the pain was unbearable. I have been using marijuana & relaxation together & that has been more helpful than any medication to quell the burning pain.
The fact that you have such bad pain/burning is proof that GBS does not last just one year. If you consulted 10 different doctors you would get 10 different opinions…none of the, have had this and cannot comment till they do. Most people I know have taken well over 2 years to recover. Fact is myelin sheaths take a very long time to regenerate. This is a documented fact. Your burning pain is from exposed myelin. Once they heal this will go. It stands to reason that once exposed, it’s like an electric live wire exposed. It feels like one is being electrically charged and plugged in all day long. This will go, but only in time. Your very heavy exercise is definitely not good for the nerves. Take it slower. You will get back there again and without the pain but give the nerves the time they need to heal and not the time you want!!
My neurologist said that the average GBS case is about 1 year & I have also read this, but I am in my 12th month & still have significant burning in my arms, hands & legs. I workout at the gym 6 days a week & am wondering if this might be exacerbating the burning. I have worked out like this all my life & have made significant gains these last 12 months. It is a real catch 22 situation. These last few months I decided that the gain of working out both weight training & aerobically significantly outweigh the pain, except for yesterday when the pain was unbearable. I have been using marijuana & relaxation together & that has been more helpful than any medication to quell the burning pain.
Hi Jacqui: Thank you for the advise, I will eliminate the weight training & try just using the elliptical machine. I cannot get an answer about the location of the myelin sheath regeneration. I took it for granted that the regeneration was taking place where I am feeling the burning, mostly arms, hands & legs, but one neurologist said the damage was done where the nerves come out of the spine. Another neurologist did not give a definitive answer because I do not think he knew. I am going to a well renowned hospital in New York. The neurologist I saw first is the one recommended by the GBS society. I am in the process of getting an appointment with Dr. Cornblath at Johns Hopkins, he is on the board of the GBS society, hopefully I can get some intelligent answers from him. I was under the misconception that I would be back to tennis in a year, I am very upset about the reality.
Jacqui said:
The fact that you have such bad pain/burning is proof that GBS does not last just one year. If you consulted 10 different doctors you would get 10 different opinions.....none of the, have had this and cannot comment till they do. Most people I know have taken well over 2 years to recover. Fact is myelin sheaths take a very long time to regenerate. This is a documented fact. Your burning pain is from exposed myelin. Once they heal this will go. It stands to reason that once exposed, it's like an electric live wire exposed. It feels like one is being electrically charged and plugged in all day long. This will go, but only in time. Your very heavy exercise is definitely not good for the nerves. Take it slower. You will get back there again and without the pain but give the nerves the time they need to heal and not the time you want!!
My neurologist said that the average GBS case is about 1 year & I have also read this, but I am in my 12th month & still have significant burning in my arms, hands & legs. I workout at the gym 6 days a week & am wondering if this might be exacerbating the burning. I have worked out like this all my life & have made significant gains these last 12 months. It is a real catch 22 situation. These last few months I decided that the gain of working out both weight training & aerobically significantly outweigh the pain, except for yesterday when the pain was unbearable. I have been using marijuana & relaxation together & that has been more helpful than any medication to quell the burning pain.
Hi Larry! Please let me know what Dr. Cornblath says. I was impressed with an article that I read yesterday that he wrote about mild guillain barre. I feel if I understood more then I could understand how to best proceed during my recovery. I would love to try to play tennis again. I want to so bad too! Have you tried to hit balls?
My app't is for 6/2, but his secretary is trying to fit me into a cancellation. He is currently out of the country & only sees patients on Tuesday mornings. I will let you know all I find out when I see him.