Guillain-Barre Syndrome GBS

I had GBS in 1982, but fully recovered. Took about 3 months to start getting better, pretty recovered by 5-6 months. Sorry you haven't.

I had the nausea so bad I didn't eat for two months in out of hospital for malnutrition and dehydration. I had numbness in face from beginning and still now but not as bad. The nausea went from all day to most of the day until finally 4 months later it stopped but the numbness has not nor the numbness tingling in feet and legs on and off worse in right side especially in face. Had a lot of pressure behind forhead an right eye. Felt my body was rejecting itself in a cellular level then pain from head to toe on a cellular level. Couldn't walk without assistance my spine felt like it was on fire and I had night sweats and gen couldn't sweat. It was terrible thought I was dying. Then came muscle twitching they are mild almost stopped now 7 months later Anyone else?

I am sorry you are having such a tough time. Did they diagnose you with GBS? Is it mainly in your legs? I felt those vibrations for quite some time and still get a little of the trembling even now when I overdo things. That's how it has been for me the whole time. I would feel better do more then relapse with weakness, tingling and tiredness. Eventually, the relapses got less and less and I could do more and more. If you went from no reflexes, it will probably take some time to heal. I was told it was a 2-5 year recovery period but it varies from case to case. I was much better after 4 months but slipped back some following a sinus infection then bounced back. I can work now and workout pretty good. I still overdo it now but only I can tell it. I have a pretty active lifestyle now but I am over 2 & 1/2 years out. Nerve regeneration takes awhile and though I am not exactly the same as I was I am so much better. Take it slow with bike. Can you do any stationary or recumbent bike? You have to be careful so you don't have too bad of setbacks but your body could ride before and I bet will recover to ride again, even if it's not that much. I can run again but not as far or as fast. You just have to find the balance as your body heals. Hope you get better soon!

 

Yes I was diagnosed with GBS.  What is probably causing me some discouragement is the fact I recovered so fast after leaving the hospital (even the neurologist and physiotherapist said it was somewhat amazing).  So when I started having some relapses it brought me back down to earth real quick.  I'll feel good for several days, and then I'll wake up and my legs feel like I ran a marathon the night before...

I now know I'll have to take it easy, and take baby steps in my recovery.  I was having alot of trouble doing the stationary bike thing, as I never fealt like I had the energy to get on it and pedal.  But now I know I have to do it, even if it starts with 5-10 minutes a day.. and then the sessions will surely get longer with time.

Fortunately I have a great wife who is 100% supportive in being there for me, and helping me out by her encouragements, and also by not pressuring me into anything to ensure I take my time in getting better.

I was a very active person before GBS, having played multiple sports for almost my whole life now... so obviously at times I am very impatient...

But after reading the comments and experiences of many others on this thread and some other ones, I feel encouraged and know that the most important thing for me is to be patient...

Things will get better with time... and thanks for the encouragements!!

I was a marathon runner before so I completely understand. I was 48 at the time and training for a flat marathon. I went from running 6 miles a day for about 6 days a week to nothing. When I was able to finally drive to the gym again I had to start by walking in the pool for a couple of minutes. I could barely get myself up the steps and out of the pool after that for how exhausted I was. People I knew at the gym were shocked but I had to just focus on where I was at this point. I remember the first time I got back on the treadmill and could barely make it to a tenth of a mile. As I got stronger, I would try more then suffer set backs.

I played multiple sports too beforehand but I can tell you I just started playing tennis again. I tried before but it was too much. I'm doing pretty good but I am careful not to overdo it. I'm also doing Zumba. That was even hard at first but now I can do the class and workout with weights. I still have to be careful with the weights. I am afraid to do anything where I lay back with weights. My grip has never been the same and I could just see myself dropping weights on my face. I started squeezing a tennis ball lately but still don't trust it. My hands shake a little sometimes after working out.

I bet because you did recover so quickly you will again with time. I got better after 4 months, ran a 5k after 6 months, had a bad sinus infection and relapsed pretty good and had to start all over again. I did an 8k and then was hit with another setback. It's so discouraging. I have finally laid off the races and am enjoying doing more activities but less agressive than racing.

Take your time but don't give up the idea that you will be able to do some of your previous activities again. It took me awhile to understand how this whole thing works. At least you know you are not alone. Don't get too down with the setbacks. It got much better for me with time, understanding, and continued careful working at it. And no matter how hard I tried not to overdo it along the way, I still did when I least expected it. 

Good luck to you!

This week I will be discharged from Physical therapy and I see the Neurologist. I hope to get clearance to go back to work next week. It's been almost two months since all of this started. I admit I'm nervious. I still can't feel the top of my feet or toes and I get tired so fast. I work 12 hr shifts at the hospital walking all night. I have to try it and see if I can do it. I feel pretty good when I wake up and get started for the day. But I still get stiff and my feet burn if I do too much or as the day goes on. But my symptoms are tolerable. I have a low impact job and a lot of coworkers I know will help me. I wonder though will I be alright. Emotionally I feel like I need to get back to my normal life. This really messes with your head. Hope you all feel better.

You might want to start off with half days the first week you go back. That's what I did. I would be wiped out after the long days. I had to do some physical therapy in between my days worked. But it did feel good to get back to my normal life.

This is a very difficult recovery because it takes so long! After 21/2 months, I'm so much better. But I have to rest a lot. I have support. You will get better!!! I look back and can't believe how sick I was.

Tarhealing my name is Jeremy I had the Tdap shot 1 month ago and I think I had a mild case of GBS just like you. I would love to talk to you about what you went through and any advice you can give me. My main symptoms are in my legs and feet.

Hi Jeremy, I would be glad to talk to you about my experience with this! I am over 2 and 1/2 years out and I have learned so much along the way. How did your symptoms begin?

Thank you for reply sorry it took so long to respond have been very anxious and scared about what is going on. I am 30/m. 2 days after the shot I started getting EXTREMELY cold feet and my little finger would fall asleep every morning. The next few days my arms were very weak and I had back pain by my shoulder blades. After about a week my shoulders were better but my legs were extremely weak. I went from running 2-3 miles a day to hard to walk down the street. My feet also started burning/tingling. I was nervous so went to the ER and they told me it wasn't GBS because I had no numbness and was able to walk on my own. My knees also starte to hurt a lot. It has been 1 month and a week since I got the shot and I have minor burning I my feet, they are cold every now and then and my legs are still extremely weak. I finally got to see a neurologist last week. He told me that I had full strength evn though my legs are weak and fatigue extremely fast. He said it wasn't a mild form of GBS but said it was Tetans vaccine induced Nueritis. He said smiler Bracial nueritis but in legs. He said it comes on fast and gets better extremely slow. I asked about physical therapy and he said I didn't need it (which I don't agree ) and that it will f better with time. Not really sure what to do next. If I should push it with my legs or if should go slow an what exercises are good. After a month were you still very weak? Also the fatigue is extremely bad but might be just from chronic stress this month.

I am sorry you are going through this. It is such a scary thing so I definitely understand. I was 48 when this happened to me and I was running 3 miles a day too. I had just run the Cooper River Bridge 10k run a month before and was thinking about training for another longer race. I got the Tdap shot and then in about a week later I get this pain behind my eye and numbness in my face then I get this ascending numbness/weakness that started in my little toe and worked it's way up my legs. I got leg weakness in a day or so then arm & hand weakness a day after that. It continued to move up my back with nerve firing/tingling/numness/weakness up to my head. My back hurt too because the PT said it weakened my core. My neurologist told me I had full strength too but I did not. I could barely walk but I was so fit from running so much I don't think it showed but I could certainly tell it. I tried to run when this first started happening and had to call and have someone pick me up. I've never done that before. Physical therapy did help me though. Do you have to have a referral? It was pricey but helped. You need someone familiar with GBS though. And even if you aren't officially diagnosed doesn't mean that you aren't experiencing it and would respond positively the same way.  I couldn't do too much at the beginning though. I actually started walking for a minute at a time in the pool at the gym where I go. I could only do a minute at first. That's all I could do and it would wear me out. I finally worked up to 5 minutes, then 10 then 15 just back and forth. Then they had me walk forward in the pool in an "S" then go backwards. They also had me do the recumbent bike but with no resistance and only a minute or 2 to begin with. Maybe you could try that if you have access. I couldn't drive at first because my vision was affected because they think I had Miller Fisher and I was so weak I could hold my clutch in at first. Take it slow when you start because you can easily overdo it and have set backs. I did this constantly. I was used to pushing myself when I ran but my body didn't work the same with this. I would also do laps around my dining room table at first. I did get a large yoga ball at the request of the physical therapist. They had my lay over it and rock back and forth to strengthen my core. They also had me lay with my back on the floor and bend my legs onto the seat of the couch then rock each leg back and forth. All of this was over several months time though. They gave me putty to use to strengthen my fingers. I would push each finger one at a time in the putty. I also used a racketball to help strenthen my grip. My original neurologist and primary (eventually replaced) never thought I was weak but the physical therapist could measure my progress and tell.  I was very weak after a month. That was about my bottom point around a month.  It was a slow go and I was extremely fatigued very easily. I had to take breaks in between my showers just to finish but I felt lucky to be able to stand. It's stressful and I could not sleep. All that tingling & nerve firing kept me awake, lots of nerve firing, tingling, numbness, pain at some point. Light regular massage helped too. Are you able to work? I had to go out on medical leave for a short time. I think being a runner helps with recovery but makes you look stronger than you are.

Yes i have been working but my boss had been awsome and just lets me take it easy all day.  I think i might have to take a break but i have 2 kids who need me to work so it is hard.  I have also found showers very difficult i have to take a break too.  Not sure if it is the hot water.  I am able to walk I can walk arund my block which is about 1/4 mile but that is about it.  I could run but only for about 50 yards before my legs feel shakey.  How long did it take for the tingling in your feet to stop? 

That's so good that your boss is working with you! They told me that it was the hot water. And heat outside may affect you too. The tingling slowly got better and better each week after I hit my lowest point and the twitching got fainter and fainter. It would be worse after I did more activity. I can still feel some tingling now after I do more but I hardly notice it. One of my doctors told me that nerves regenerate at about a 1 inch per month rate and sensations get better as you recover. If the damage is not as extensive, you can make a pretty good recovery. My symptoms began in June and I ran a 5k in early December. I worked hard at it though along the way. You have to listen to your body and take it pretty slow. I had set backs along the way because I would overdo things. I had a reflare of symptoms after a sinus infection in that January. That really through me because I thought I was done with everything. It was never as bad as the beginning though. My neurologist told me not to get the flu shot because of the increased risk of getting GBS with the H1N1 portion of the shot. Some are on the fence about this but I am too afraid to take the risk I might suffer what I did after the Tdap shot. My legs would feel really shakey after I would do activity where they were not like that before too. That got better for me with time and taking it slow. In three months, I was significantly better. Do you have twitching?

Tarhealing,

Thank you again for the support. I am looking for advice and am a little scared. After I last talked to you I saw good improvement. The tingling and burning felt as if it was gone. Unfortanatly I was feeling better so I tried to walk on the treadmill for only 10 minutes and did some stretching yesterday and most of my symptoms have come back today. It stated with feet feeling cold and progressed to burning pain up my legs higher than before. Then my legs became very weak. I thought I was on my way to recovery but this set back is making me scared. Did you have similar issues? Just scared and not sure what to do anymore.

Jeremy

Jeremy,

Glad to help. This is how this worked for me the whole time. I would feel better and do more then have set backs. With time it takes more and more to get the set backs and you don't fall as far each time but it's always discouraging and even scary because it's not what you were used to previously. That's what I found. It takes a while to learn your new "normal" then you get stronger and better, do more, and mess up again. You have to go at it slowly. I was notorious for overdoing it. I do think it's still good to keep trying things just be careful and give yourself a break when you have to rest up again. It got where I was kind of used to that but still was frustrating. It can still happen to me now but it takes a lot so I don't push it to that point. It's like a 2 to 5 year recovery period for nerve regeneration with GBS but it keeps getting better along the way if the damage is not too bad. My doctor told me that recovery is like a bouncing ball in that the ball keeps bouncing lower and lower as you get better but it goes up each time. It did seem to be like that for me. The first time I got back on the treadmill I walked for a tenth of a mile and could barely walk back out of the gym. I broke down crying to a stranger I met on my way out. I just felt so defeated but I learned to work with it. However, just as I thought I had it figured out and was really improving, I'd overdo it again. It does get better. Everyone told me to be patient, but that's not my nature. I like to attack problems and work to fix them. You can do that with this but you have to go slowly and be forgiving of yourself.

I run 3 miles on the treadmill about 4 or 5 days out of the week and work out with weights and no longer have that kind of set back but I'm close to 3 years out. I've even added a zumba class a couple times each week for fun. If I do all of it in one day, I do notice it in my legs with the twitching but I can barely feel it now and have very little of that weakness. Keep up your stretching and rest up. Then, I bet you will feel better and can try the treadmill again but maybe start with less time. When I was experiencing this, I wished I could find specific information for recovery and working out again-like a training schedule. My best info came from those ahead of me with this. And everyone is different but much is the same. The first 3 months were pretty tough for me so don't be too hard on yourself. It kept getting better but I did hate the setbacks! 

the same thing happened to me i started exercising to soon and it put me right back to where i was.  body was not ready yet  lesson learned real fast, to slow  down

playing 18 holes of golf  a week now and feeling great.

thou i have to say my mind is still a little wobbly but who cares if you can 

play golf and drive youself around.

mid june of last year i was diagnosed with GBS  using a walker in june for about  3 weeks .

I didnt take the flu shot this year either. 

 

Thank you so much for replying. The setback is frustrating and scary but you give me hope. It's hard because earlier in the week I walked longer with no bad effects but this time it hit me hard. I wish I had a phycisal therapist who could gauge how I am doing and tell me when to stop it's hard on my own I am so used to pushing through the pain. Did you wait till your legs felt much better before trying just not sure if I should rest for another week or a few days.

after that one time of exercising on the treadmill  too soon and could not hardly walk the next day 

i learned my body told me to  SLOW down. that was good enough for me .

try not to  push anything it will come back natural in time you will see.

not sure if i should of been driving yet since i was still so loopy

but one day i  just grabbed those keys and out i went. 

 

It didn't follow regular rules so it was always hard for me too. I was used to pushing through pain too but I couldn't do that with this. It would sideline me. And my physical therapist didn't know specifics like that. I feel like GBS is so rare that not many people are that familiar with it. I would wait until my legs felt better but you'll have to judge whether it's a few days or a week. If I tried to soon, it was just a fail. You may have to cut yourself off sooner when you do try again even if you think you can do more. It may have made a difference if you are working or doing other things around the house too. All of that would affect me as well. And then I can remember it not making sense for the setback numerous times. I'm sure I reached out about that many times. I kept trying to figure it out.

Thank you so much for the insight it helps so much knowing I have people on my side. You too Miroco.

It was weird driving again. I drive a stick and I could not hold the clutch in for long at traffic lights. I had to pull up the emergency brake and rest at red lights. It felt like a leg workout. My hands would get shaky if I drove too long just from using the wheel. Never felt like driving was a workout before this.

LOL 

  I know i went and picked up my daughter my first time out and told her were going to breakfast !

she was a little shaken by my driving for a few weeks

 and i have an automatic

we laugh about it now

yes this support group was a lifesaver for my mental. just knowing i wasnt the only one

I know it helped me so much to get feedback. Still does. It's terrible to feel out there alone struggling with this. For me, being able to help is one of the positives that came out of something so negative. It's great to meet others who understand what this is like.

Tarhealing,

Sorry to keep bugging you I have just one more question. Did you ever notice cold feet. Not sure if it nueopathy or not but when I am at my worst my feet are always extremely cold. Did you ever get cold feet?

Jeremy

Jeremy,

I don't remember the coldness as much as the numbness. Do you have much numbness? Massage helped me so much. I hated all the numbness, as well as the pain that I had. It was pretty bad in my feet and legs. Do you have any pain yet? I feel like your feet have been hit the hardest.

Yes I have pain. It is a burning type pain. Also my knees hurt if I over do it. The pain is definilty worse in my feet but goes up my leg. It seems to move around come and go which is weird hopefully a sign I am healing

As far as numbness goes I am not sure. My feet feel like they are asleep but when I touch them I can feel them. I know the neurologists poked me with a needle and a cotton and I can tell the difference. When you say numbness did you mean you couldn't feel when things touched your feet or legs?

The numbness I had was just like you are describing, my legs, feet, face felt asleep but I could still feel as well. Feeling things is definitely a good sign! That burning pain finally went away for me. Oh, and I overdid it last weekend and had fatigue for 3 days. I could still work though just couldn't work out. It still gets to me when that happens. You think I'd be used to the way that works now but I get so used to feeling "normal" most of the time now that I over do things. Sometimes my body can handle that then other times it can't . Never as bad though so still encouraging. 

How lon did it take for the burning pain to go away for you?

Several months. It hurt when it was happening then I think it hurt when it was regenerating. It was hard to tell the difference. The skin sensitivity lasted longer.

What type of skin sensitivity did you have?

It was this strange numbness/skin sensitivity along the outside of my calves. Hard to explain but it felt weird and took a while to get better. I didn't notice it so much at first because I had bigger problems I guess that had to get better first and that lingered.

Tarhealing,

Hi again.  I was checking to see how you are doing. I want to updade you on how i have been doing and possible see you are feeling.  The nerve pain has gotten better.  I dont have the constant tingling and burining in my legs and feet which is good.  But I definitly noticed that strange sensation on my skin.  It almost feels like they are sunbunred or that someone is pouring water on them.  My main issues are still the leg weakness and knee pain.  I feel like i have improved when I compare myself to the first month but it is still scary.  I have talked to 2 other people who had bad reactions to TDAP shot with similar issues and one said it too 7 years and another said it has been 5 and they still are not better.  I guess i am just very scared right now.  When did you feel like you turned a corner and felt like yourself again i feel i just cant get past this.  Also I was wondering If blessedmum ever recovered?

Also did your twitching start from the beginning?  2 months out and my legs keep twitching.

Hi Jeremy!

Glad the nerve pain is better! That's great!! It took awhile for the leg weakness to get better. I was going to PT about twice a week for 3 months. If you do it on your own, work slowly to regain your strength. Try recumbent bike if you can but don't put any resistance on it and don't do it long-just a couple minutes at first, if that feels ok. It is scary but you are doing good. That's how it happened for me. That strange sensation got better with time but it took a long time for that to go away. I just ignored it the best that I could but other things got better so I was thankful if that's all I had to live with. I still have the twitches but they are so faint now that I hardly notice. I get them when I work out or after I run or after I do something physically challenging. I used to have them constantly. Sometimes it kept me awake. But I believe that gets better as the nerves heal. I think I will always have them because regenerated nerves don't seem to work as good as original nerves so I feel it's like a misfiring of sorts but I don't know that for sure but that's how it feels. They say it's a 2 to 5 year recovery period so who knows, it might disappear but it's not bad at all. I felt I really turned a corner after I hit the bottom after 1 month and it was so much better after 3 months. It keeps getting better all along mixed with mini relapses or at least that's how it worked for me. And blessedmum is doing great! She has been a great friend to me both then and now. We really helped each other thru the setbacks and triumphs. Be sure to focus on the positives and be patient with yourself. I feel encouraged about how it is going for you. You may want to also check about the program for problems after the Tdap. Keep in touch!

 

My legs are actually faintly twitching now but I did a Barre class two days ago for a competition at my gym. I had only tried this class once before and it was probably 6 months after my GBS occurrence. I shook so bad from fatigue and weakness during the class that I never returned. This time I had no problems except a little with the planks. This is probably why I am noticing the twitching more. But I don't really notice now unless I think about it. It's definitely easy to live with, it gets fainter and fainter  or at least that's how it happened for me. I'm going to try another new class today. I would have never believed I could even try this. I will not run in the same day though. You have to learn what you can do and can't do then I push myself a little but I still mess up. The lines keep changing but you have to keep trying so you get stronger. They say be patient but I'm not the best example of this. Good luck to you!!

Thank you again for the encouragement I really needed it. What program for problems after the Tdap ad you talking about?

I also had one more question. Did you have your reaction after your first Tdap shot or did you have one prior?

You are so welcome! And some reactions from the Tdap vaccine are covered under the National Vaccine Injury Compensation Program. Might be worth checking into.

I have always had the Td booster since my original Tdap vaccine when I was younger so it had been years since I had the Tdap. When I had my injury and had to get the vaccine, the office only had the Tdap vaccine in stock. I believe this has probably been reformulated since I had it last. Did you have a problem with Tdap before?

Thank you I will definitely check it out. Did you use the program? Also just curious was that the first Tdap you got. I had one 6 years prior with no issues and I just came to find out today that the Tdap is a one time thing I should have just gotten the regular tetanus.

I should have gotten the regular tetanus too.  I didn't get the diagnosis until later so my original doctor hurt me with the program. You have the early medical support though so it may be helpful for you.

I've always been pro vaccine but I do believe that some vaccine formulations need to be reevaluated. I feel that these cases are underreported because many doctors are reluctant to say anything negative about vaccines because they save so many lives. I do feel that some of the molecular structures of these vaccines are too close to the structure of the myelin sheath and this molecular mimicry may be causing GBS. I just wish there was more incentive to reformulate these vaccines and more support from the medical community so that others don't have to suffer from this.

Tarhealing,

Hello again.  I hope you are feeling good.  I have another question.  I felt good last week but then i tried to ride a bike and kind of over did it.  My legs felt a little sore the next day but not to bad.  Then the next day i realized again i over did it. Tingling, burnining in my legs and feet.  And my question is about twitching.  This past week my twitching muscles have been crazy.  Almost all day now everyday for about a week. Also it is all over.  Mostly in my calves but I feel it in my arms, chest and abdomen.  Is this how your twitching was or was it just in your legs?  I am really scared now because I looked up twitching (fasciculations) and it showed signs of ALS.  I have never once really worried about all this and just new it would take some time to get better but now I am really scared.  Did your Neurologist or doctors say anything about the twitching?

Also did you ever take anything for the pain?  I didnt want to but being in constant pain for 2 months is taking its toll.

Hi Jeremy!

I had this twitching you describe everywhere (mostly calves, but also arms, chest, abdomen, face, even tongue). My neurologist told me it was a sign of nerve regeneration. It would definitely get worse the more activity I did. I still get them in my legs sometimes after I do more activity but it's much fainter than before.  I just saw a post online that I did asking other people about my twitches on  August 2014 that I had since June. I remember it was so bad in the beginning that it even kept me awake because of all of the activity and I was worried too. I could even see them sometimes. I do feel like it's faulty nerve firing because it got better and better with time. I just learned to live with it but it did get better. I don't think it will ever go away for me. I just don't think regenerated nerves work as well as original nerves. As for ALS, this can be a symptom because of the interuption in the nerve signal as well but it's also a symptom in GBS. I did read that it could be nerve degeneration or nerve regeneration. I think that I had it both times. Now I think the nerves that were affected the most for me (calves) still have trouble after I do activity and just kind of misfire a bit. For me, it's a very small reminder because I can do so much now. And I did struggle with pain in the beginning. I tried anti-inflammatories, acetaminophen, Gabapentin and a muscle relaxer. Massage helped best. Nothing else really did but I didn't want to take a controlled substance or narcotics because I was trying to get back to work as soon as I could and couldn't be impaired in any way to do my job. I remember it was tough but I pretty much suffered through it. My pain went away thankfully though and the twitching got so much better.  

Tarhealing I have a question did you ever get pain in one of your wrists or forearm? It can on for me 2 weeks ago. Almost arthritic pain if possible carpel tunnel pain.

Thanks

Tarhealing,

I have a question about your twitching in the beginning. I had past the 3 month mark and feel I turned a corner. The burning tingling pain is so much better. The question I is was there a time where your twitching was constant even when you didn't over do it. I have been taking it easier hopeing it would make the twitching stop but it is still there for almost 2 weeks straight now. Was your twiching only after working out or pt or did you twitch while taking it easy too.

I saw you talking about twitching and I am also having that issue. I'm a runner and just starting back to running about 6 weeks ago. I've had the twitching in my legs for about a year along with shock type pains, but now that I'm running again it's increased in calves and shins mostly, but allover from just above knees down. How long have you experienced this? I'm only running about 9 or 10 miles a week. My hands and arms go really numb and lots of pins and needles in them. Do you get this too? I'm happy to be running again, just wondering how long this will go on.

My twitching was constant even when I didn't overdo it. It was a very long time before the twitching was no longer constant and I still have it after activity even now and it's been 3 years almost to the day. I'm actually at the beach right now about a block away from where this hit me 3 years ago. I'm planning to run in the morning down the same road where I had to be picked up after my legs would not work. With time, I got fewer and fainter twitches. Now I only feel them after a lot of activity or too much heat. I wonder if I will feel them forever. I'm used to it and it's very minor now. Used to be so strong and keep me awake. Lots of pain too. The pain completely went away for me which was great! I did have some pains that felt like flares of pain at time like the arthritic pain you are saying but that went away too. I feel like the twitches are related to nerve damage and nerve regeneration. Good news is that I can barely feel it now though. I think the 3 month time for me was a big corner turned too but lots of ups and downs after. Don't get discouraged when that happens if it does though. I think that's how it works but it should progressively get better and better!

I'm 3 years out and running about 12 to 15 miles a week. I do get the twitching in my calves a little after I've run but it's pretty faint unless I run harder or faster or have done too much. I used to get the numbness and tingling but don't get that now. The heat kills me though. It's like my body doesn't bounce back from adverse conditions as well. I ran after I worked the other day and I could see some of the twitches in my calves and it had been awhile since that had happened. I really have very little twitching now. But I can still feel them when I lie down at night after I have run that day but it's not many and they are very weak. I've tried to up my mileage but I still have trouble. I've been pretty happy though being able to run 3 miles at a time. I'm going to do the run portion on a triathlon team coming up. Hope not to overpush. I've done a few 5ks since but not too many. I bet your numbness/tingling will get better. It's hard to know how to build when you are not sure how your body will take it. The unpredictability is tough. It has gotten much better for me though! I'm happy to be running again too!

Thanks so much for responding. It makes me feel better to see that Imm not alone and others seem to be having similar symptoms. I live in Fl and although I run at 5:30 am it was still 75 this morning. I managed 6 miles but it was rough. Had to walk on and off and both hands were so numb and painful I could hardly grab my water out of the belt, Might have to start using my Camelbak. After my run my hands calmed down, but had bad cramps and tingling in my calves and ankles. Sounds like this is normal. Was worried GBS was getting worse again. So happy at your weekly mileage! That's great! I hope I can get my mileage up be end of summer. Have the Space Coast Half in November. All of this has been very depressing, but I'm feeling better about it. 20 years ago I was injured in a fall. Had a TBI and stroke from head injuy. Also injured back, neck and shoulder. Spent 6 weeks in a body cast, had surgery, 2 months in hospital and another 14 minths in a full torso brace. Took years of therapy to walk without a cane. Just started running 3 years ago and then this GBS happened. Feels like deja vu. Anyway, it helps to talk to others going through this.

Thanks...enjoy your trip!!!

I too have an unconfirmed case of mild guillain barre syndrome. It's only been 2 months since initial tingling that started in my feet and within 3 hours had made it to my arms and eventually my head followed by pain in my back and neck. I had minimal weakness, more uncoordinated/altered than anything. I was just wondering in your experience did you have flare ups? I was getting to the point where I didn't notice the tingling unless at a complete stop thinking about it but the past 3 days it picked up quite and bit and is becoming intermittent. Sometimes it's moderate sometimes very mild. Did you have good and bad days?

Should I be worried about this sudden increase in tingling for a few days? Thanks for replying to everyone especially for years. You're truly amazing. Your posts gave me comfort that I am not the only one.

Thanks for reaching out! I did have flare ups especially that close to when it all began. I would get more tingling and even numbness at times the more I did. When I would feel better, I would do a little more because I so badly wanted to get back to my regular life. I did have good days and bad days. It was so unpredictable. Can you pin point what may cause your flare ups? I still get twitching but it's really mild now when I do a lot more activity and I'm 3 years out. My legs are barely twitching now because I ran 3 miles earlier. I'm not complaining but it's a reminder for me. It rarely tanks me out with any weakness but it still can if I don't watch it and really overdo things. I had a sinus infection about 7 months after my initial problem and had a pretty bad flare up. I thought that I might have CIDP but that wasn't the case. It was just another flare up. I've had other sinus infections after that and was fine. I think that it had not been long enough yet. I would watch the tingling and back off from too much extra activity. Mine would get better then swing back but over time just got better and better. I know it worries you because you are never sure if it will get better or worse. From my experience, it fluctuated and never got as bad as it was initially. It's scary and frustrating though.

I have always replied since because I was helped years ago from this site when I felt like I was the only one. Being able to possibly help someone else is the positive that I feel came from a negative. Do you know what may have triggered your case? Have you had good medical support? 

I have no idea what triggered it. We ran 17-20 vials of blood. Saw a neurologist who sent me for 2 MRIs one of brain without contrast and the other of brain and cervical spine with contrast. Everything came back normal. The neurologist (MS specialist) saw me for 10 minutes and he said he didn't suspect gbs (and never suspected ms) but my primary care physician was the one who mentioned that's what he thought it was. The neurologist is sending me for nerve conduction tests after this last flare which came with urinary urgency and frequency (possible retention). That has gotten much better and is very intermittent/almost gone. I never had a spinal tap or anything. I want answers but I'm afraid at this point I might not get any. I did start lifting weights again and I think that might be was triggered tingling over again. I just don't know. I think doctors don't want to tell you gbs unless you are paralyzed and it's definitive. Liability maybe? I had ascending paresthia starting in my legs and within 3 hours it was in my tongue. I felt like my heart would slow down to nothing at times. I didn't want to go back to the ER with back and neck pain and heart problems and seem like a total hypochondriac but I felt like something was terribly wrong with my heart a lot in the for at few weeks. I go back to the doctor today to discuss my concerns and see if there are any other tests I could run or if for sure he believes it was gbs and now it's too late. This is all so confusing and i was doing so well. Tingling was so mild, almost non-existent and then bam ...back again. I'm so confused. Thank you for replying. I was so happy to hear that if the is correct that this flare is normal.

I am back to gym also. After lifting weights I start get tingling back arm and leg. I walk to much or do to much I get exhausted. Before gbs I had lots energy not now. I had gbs in Feb until April than I was sent home. Maybe to early yet to see more quicker improvements

Hi Allan. I am so glad to hear this reply from you and I'm glad to hear youre okay. It sounds like your case was quite acute. Were you hospitalised? Did you have IVIG treatments? My case was never figured out. My family doctor was the one who mentioned that he suspects it was a mild case of gbs. The neurologist I saw disagrees but is sending me for nerve conduction tests at some point because of my flare up in tingling. Honestly mild gbs makes so much sense to me, it follows the pattern of ascending paresthia with back pain and slowed heart rate and blood pressure. To be fair to the neurologist he literally saw me for no longer than 5-10 minutes and was actively looking for ms symptoms as that was my worry at the time. I had never even heard of gbs until googling my symptoms after they checked me for a stroke in the emergency room when it all started. The tingling is slowly going back down after my flare over 2 weeks ago. Tingling just goes up and down throughout the day since then. I'm comforted to know someone with confirmed gbs has small flares too as it would be considered normal and in my mind seems to confirm the suspect diagnosis from my family doctor. I just want to say that those who reply are such a blessing because I honestly don't feel so alone in this. I have two young kids and a husband that can't make heads or tails of this and neither can I. Some days are harder than others with no definitive answers and even if it turns out to be something else I'm glad you took the time to reply with a sense of understanding. It really makes me feel a whole lot better. 😙

Yes I was in icu for 5 days blood pressure up up and out off control.one point my heart rate hit 38 I felt like I was dying. Pain in my back . Tingling in my arms legs. I was in icu 5 days than on second floor for 8 days in Aberdeen new glasgow. I was not able to stand or walk. I than was sent to rehibilatiin center learn how to walk again. They figured be 6 months to a year but I was able to get walking again in 6 weeks. I still have issues with my knees and legs feel stiff sore .I workout at gym they tingle. My legs felt sometimes make me feel like I am 80. It's frustrating but I stay on gabapontin 900 mg a day. I am still only going on 4 months so anything could happen from here on in. Least I am walking and not waiting for months. I was very active gym 4 to 5 times a week and swam all time at pool before this happened. I am back to gym but I am limited still but hoping time goes on I be completing healed. I was diagnosed by neurologist whom did 3 hours off tests, poking my nerves with needles and shocked me alot on my legs and arms . Hope all goes well for you

Hi Jill323

How are you doing?  Have your doctors considered CIDP?

I had a post vaccine reaction (tingly, burning, cold, numbness) that affected my fingers, arms, feet, legs and face, scalp.  My neurologist thought it might be mild GBS.  I am at the 4.5 week mark after initial symptoms.  Very scared that it might progress or might be CIDP instead.

Mary

Mary,

I had the same reaction after a tdap vaccine. I am 4 months out and improving very slowly. What vaccine did you get?

Hi Mary,

Which vaccine did you have? I had the Tdap. It affected my arms, legs, and face too. They believe I had mild GBS. I did not end up with CIDP but it took awhile to recover. It is very scary!

Jeremy,

How are you doing? I did great the other day with the 5k of a Triathlon Relay. The heat didn't get to me too bad and I bounced back after about a day and a half. A little extra twitching in my calves but no crazy fatigue. It was so encouraging!

That is awesome. I have been doing alright I have good days and bad. Physical therapy has been a huge part. I am starting to lightly jog and I can tell it is helping. My legs are still twitching but it doesn't bother me as much... I must be getting used to it. I still have the burning pain in hands and feet. I am just hoping it goes away with time. Thanks for checking in on me I appreciate it.

Hi Mary,

I am alright and CIDP was never discussed. I had nerve conduction studies done and they were all normal. As of now my tingling is very mild to mild at worst. I don't notice it unless I focus on it or am at complete rest. Both neurologists I saw are confident it will resolve given time. I am hopeful. I really don't want to have to go back! I don't deal well with the unknown but I'm trying my best to not ruminate on the possibilities. I am taking sublingual b12 as my b12 is on the lower end of normal. No harm in optimizing health. I'm taking care of myself as best as I can and treat everyday as a gift as I don't know what to expect with this weird phenomenon. It really is an emotional roller coaster with these things!

How are you? Everything settled?

Warmest regards,

Jill

I had almost everything you had but few months in didntour muscles twitching a lot at first but now not so much?

When did your legs start twitching? During recovery or before? Mine have since couple months since being sick but milder now hoping it goes away.