Guillain-Barre Syndrome GBS

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M

I was struck down by GBS seven months ago. I just collapsed in the street. No warning. I didn't know what was happening. I was scared. Got myself to the doctors straight away where he admitted me to hospital straight away. Just had over a week in hospital (I was lucky) but then as I came home, I was on my own to cope with this condition or should I say inconvenience. That's when the fun started. I had to have carer's come and see to my every need. Also had to have meals on wheels. (Only in my 50's, I found it so degrading). I have always been independant, now I was forced to be looked after. It's like starting all over again. Learning to talk, walk and do things. Almost going back in time when I was a baby. But, here I am back on the computer, talking, walking (very slowly, still with a stick) but getting there. It's almost like I was doing too much at the time, and it's slowed me down. But, now I take each day at a time. Life's so presious.

For anyone out there just starting to get back to normal. Just keep going and never look back.

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  • Guest
    M

    Posted

    How are you feeling now? Are you fully recovered?

    I had Guilliam Barre in late 2002 at the age of 19. I had a very severe case and was in hospital for 6 months. I found the few years after I came out of hospital very hard, but was just relieved to be back in normal life. My doctors told me that I would never walk again, but I am pretty much back to full strength now.

    The only side effects that I have is extreme fatigue and recurrent pins and needles. Does anyone else get pins & needles?

    I hope you are feeling much better and have made a good recovery.

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    • Posted

      Can you please explain how the pins and needles feel? I have been having burnig sensation and tickling sensation on the sole of both feet for two days. I recovered from flu a week ago. I am worried given my recent travel history to Brazil where GBS cases associated with Zika virus are on the increase. The urgent care folks seemed clueless. Thank you.

       

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    • Posted

      For me, the pins and needles felt like my feet and legs were partially falling asleep and it was ascending over a few days. Started in my toe then moved up my calf in the beginning. I still had feeling though but it was limited. I did get the burning and tickling sensation too. Some people do get it after the flu or an infection or in my case, a vaccine. It's pretty rare so some doctors aren't too familiar. I had plenty of problems with that but kept trying to get help since my symptoms kept progressing. Milder cases can move slower and cause less damage. Is it only in your feet? Any nerve twitching?
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    • Posted

      Thanks Tarhealing for taking the time to reply. Yes, it is only in my feet right now. This is the third day since they began. I do not have any nerve twitching. Would you recommend me to check back with doctor if it persisits?
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    • Posted

      No problem. If it persists, I would check with a doctor but try to go to someone who would be familiar with this or refer you to someone who would be familiar with this. I made the mistake of going to a few doctors in the beginning who didn't understand and I really needed to see someone familiar with nerve issues while I was actually having the initial symptoms. Hope it gets better soon and doesn't get worse!
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    • Posted

      I got it in 2003.  I am ully aware of the pins and needles thing.  Mostly extremeties, left side only...also in face...again left side only.  I have found being totally GRAIN free and keeping my diet to alkalize as most as possible helps me from getting recurring issues.  My GBS started with a flu shot.....
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    • Posted

      I was diagnosed 2 weeks ago after a year of excruciating shock type random pain in both legs and left arm. Also had numbness in ankles and above knees and both hands. Still have extreme fatigue, too but other symptoms are starting to go away. Does this come and go? I'm a long distance runner and am afraid it will come back. I got this after a bout of pneumonia ladt year. Is there anything I can do to keep this frim coming back. Can't mpated to others I feel lucky I wasn't paralyzed, but the last year has been pretty awful.

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    • Posted

      Extreme fatigue still gets me now with longer distances and i'm going on 3 years out. I can run 3 miles though with no trouble 4 or 5 days a week so I'm excited about that. I hope to do the 5k portion of a triathalon in a few months. Whenever I've tried to up my miles or run faster, I tank out. I haven't given up on the idea though. I just might have to increase miles over a longer period of time. Are you able to run the longer distances yet?

       

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    • Posted

      I was recently diagnosed with heart arrhythmia (I managed to finish the Key West Half Marathon before colapsing at the finish line and taken to hospital in Jan this year) and I will be getting a heart ablation soon. I was having so much pain, numbness and fatigue they wanted to figure out what that was first and now I know it was GBS. My farn right leg has been going numb all the way to my knee for nearly a year and the pain in my left arm was so bad during that half marathon I stopped several times. I got clearance to run as ling as I keep it under 10 miles. I also have asthma. I tend to push through almost anything. My husband says I'm stubbirn. I prefer tenacious. I am currently running 3 to 5 miles a day 3 days a week. There are days I just don't have the energy so I skip a day. At least the pain and numbness are subsiding now. It's been a year like this. Does the fatigue ever go away and do you get flate ups from the GBS? My case seems to be mild compared to others.

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    • Posted

      My case was mild too. And I have experienced flare ups when I overpush myself. I ran a 10 k kilt run a year after my GBS and had problems with my heart rhythm along with more numbness and nerve issues. It finally settled back down and I have been able to run 3 to 4 miles 3 to 4 days a week and working out. When I try to push the miles up, I get extreme fatigue so I've held off doing that again yet. I too push through but this hasn't worked right for me. When I try to push through it kind of backfires so I've been watching it more though that's not in my nature. I haven't had the fatigue in a while so I'm going to try the 5 k race. I know that I will push myself during it though. I'm doing a zumba class once a week but can't run and do weights in the same day or get that same fatigue and zumba is not that strenuous for me just more fun. It's still too much. And don't get me wrong, I am not complaining about being able to do this much activity. I was just used to more and my body won't let me do it like I could before. It's so hard to figure out!

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    • Posted

      Oh, I hear ya! I can no longer do more than one workout the same day. I used to work out at least two hours a day, but that was more than a year ago, Now I'm lucky to get in 3 short runs a week and lift weights on the off days.at least twice a week for less than an hour. Some days it takes me the entire day just to talk myself into exercising. I wonder if you backed off your running to 3 days a week if you could handle a longer run? I ran 5 miles on Friday (it was rough) and then didn't run again until today. I ran 3 miles this morning and had a faster pace. I'm wiped out now, but got a good run in. I had to defer the Gasparilla Amber Challenge until Feb 2018. It's a 5k and 15k back to back and a Half Marathon the following day. I hope by then I can manage it. That Half Marathon in Key West was the most painful and exhausting run I've ever had. I nearly passed out several times before the ambulance took me. I don't want a repeat of that. Maybe we can both experiment with our training and find something that works. Like I said, I think I had a very mild version of GBS, so probably why I can push through some of this. It appears it affects everyone differently. You seem to be about like me, though so maybe we can figure out how to combat this darn fatigue. I'm going to tead up on the autoimmune diet and see if it might help.

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    • Posted

      That is same way mine started . I would go see doctor and mention gbs. They can send you to neurologist. Mine went on for two weeks than it fit worse I ended up in icu . Rehab for a few weeks. I was really fit active healthy before. I had a tb vaccine which caused my gbs
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    • Posted

      I am three months recovering .I am walking much better but get tired easily and I go to.gym or work to.much the tingling comes back in my arms and legs.after sitting for a while I feel real u sore stiff I get up and sometimes muscle pain.
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    • Posted

      The worst pain finally subsided two months ago. I got better in my legs first, but my arms and hands ( especially the left) was horrific pain for nearly a year. I was just diagnosed with GBS about the time things started to subside. I had pneumonia a year ago and all this started then. I'm lucky it wasn't worse, but wondering if symptoms and fatigue go on forever or if it goes away. I get bad calf twitches after running and can't do much arm strengthening training yet. Anything I can do to help? Currently still taking anti-inflammatory and Gabapentin.

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    • Posted

      Hi. I had this thanksgiving last year. Did you relapse? I had my face numb and head pressure I was so sick I didn't eat for almost two months lived off ensures when I could. I was so sick I thought I was dying.

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    • Posted

      I was first hit by GBS in 2012 total paralysis then recovered and was hit again in 2015 this time not as sever as first time but the bouts of fatigue have gotten worse and more frequent recently. The pins and needles in my fingers and toes never went away neither did the feeling of panic at night just as I go to sleep does anyone else get that ? 
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    • Posted

      I've never had any panic issues, but still have the pins and needles feeling, random shock type pain, loss of strength and constant pain in my hands and severe fatigue.  I don't know if it ever goes away, but I'm getting better at dealing with it most days.  I was diagnosed in May this year, but it took about 10 months of symptoms before I finally got a diagnosis.  All of this is fairly new to me.  

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    • Posted

      I found going grain free, soy free and dairy free lightened the reactions - the nerve damage, the tingles in limbs...   my gbs triggered tremendous autoimmune issues that I try to keep at bay Best I can.  Inflammatory foods trigger it still as well as stress.
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    • Posted

      Karen I’m really hoping you get this message as your experience is similar to mine. 

      May I please ask a question and I’m thankful for any feedback or suggestions. Apologies for the long message but docs are at a loss right now and so I’m hoping those suffering / surviving or hopefully with changes thriving, may have suggestions. 

      Around 8 weeks ago I suddenly became ill. It felt flu like (but no cold symptoms). I had debilitating fatigue and severe muscle aches. I just collapsed on the sofa and did my best to cope,thinking it was a virus (still may have been). I then started to have shooting nerve pain all over my body. On the Monday I felt a little better but in the Tuesday I had nerve or muscle pain in my *L* foot it was acute and very painful after a few hours I went to ER. My right foot started with a mild version of this. Two days later my *r* leg suddenly went (right leg) our from under me and for around 5 mins I was screaming it was like something exploded, excruciating. My poor son called an ambulance. For about a week I then had shooting nerve pains and severe muscle, then joint pains. Plus other neurological symptoms (jerking, twitching). Needed strong opioids to deal. I then moved on to Gabapentin. I’m still weak particularly on right side. Mri of brain ok, bloods so far normal, muscle and nerve test ok. No explanation how I can go from normal to not functioning well. At one point I couldn’t hold my cell or raise my arms due to weakness. I can now walk but have gone from fit and normal to barely making it around the block. Initially I could only walk a few steps Muscle and peripheral or possible small fiber nerve pain is still bad but less intense and my knee joints now pop/rub. I’m seeing neuro, rheumatoid and cardio docs and tests reveal nothing. 

      How were you finally diagnosed? My neuro is awful and hates being questioned m (i am on wait list for another). Your scenario sounds so much like mine but I don’t know what to ask for to find an answer. Please help 

      .

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    • Posted

      Arabella, I was admitted to the hospital and underwent numerous tests before I was diagnosed by a neurologist.  He did several tests including a nerve conduction and another type of nerve test along with several lengthy MRI’s.  Usually a spinal tap can give the diagnosis of GBS.    Your symptoms sound very much like mine.  Not every doctor is familiar with GBS.  I complained for months before things got so bad my husband took me to ER.   I described the pain like getting hit by a jolt of lightning.  It would make me scream and my legs kept giving out.  I’m much better now (26 months since onset of symptoms and 14 months since diagnosed) but I still have symptoms.  I had a mild form of GBS. I sure feel bad for those that had it worse.  If you can’t find a doctor that can diagnose you maybe you should go to ER.  I had a whole team of doctors running tests and sometimes that’s what it takes.  Spinal tap and nerve tests seem to be the best method for diagnosis or to rule it out. So sorry you’re going through this.  I know I felt a sense of relief once I finally found out what was wrong.  Not knowing is stressful.  Not sure if I helped you, but I wish you the best and let me know if you find out anything.  
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    • Posted

      I had worse gbs ever (Gillian Barrie ) I collapsed 10 days in out hospital . My kids thought doctors thought I should of died but they finally did spinal tab . I was paralyzed head to to on life support . It’s 3 years now still have numbness in feet legs . Same doctor 10 days telling me I’m having axiety depression took them 7 days after to do spinal tab . There wS nothing left of me they put me on life support plasma . I was in hospital 1 year . They transferred me to physio rehab Center . Had Psw for 2 years they took that away from me when I still couldn’t move much . Waiting on nerology again cause of issues they closed my file cause they figured I didn’t need them told my dr you send me there been 6 months still nothing . Gillian Barrie is like having ms as they say I’m still using walker have use wheel chair for long distance I go to the gym try to over come you need to exercise daily . 
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