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Welcome to our family. Sorry you are going through one of these frightful syndromes.
I have cidp. So, i do not know if what you are experiencing from gbs is normal or not.
i do know there are some incredibly knowledgeable people on this forum that will be able to help you.
We are here for you to laugh, cry, vent, learn.

Hi Sean and welcome,

Unfortunately (boy, thats not a nice word to start a reply with) fatigue is [I]the[/I] most common residual with GBS, and it [I]may[/I] very well be something that wil[I]l [/I]plague you for most of your life 🙁 – sorry to have to say that.

Very important to remember that when doing PT you must not push yourself beyond what your body tells you you can do. In the case of GBS, the saying ……. ‘no pain, no gain’ definitely does not apply – you have probably read that here already though. At this point in time, rest is still extrememly important for your body, specially since you are so early into your recovery phase. Pushing yourself because you think thats the best thing you can do will unfortunately only set you back.

You are right about the lack of knowlege out there, unfortunately this is so common, and in many cases the patient suffers even more because of that. Great kids of yours by the way! Keep us posted and I hope you find this site helpful in many ways 🙂

hi jones & welcome,

rest, rest, & more rest lying down is the fastest road to recovery no matter how long it takes. gbs stands for Get Better Slowly.

gene, away from home

Hi Sean and welcome: Doctors have not yet caught up with established facts about GBS like residuals which, unfortunately, are very common. You can have fatigue, pain, and what feel like relapses. They are right, though, that noone can predict for you the course of recovery. Some ofus recovery a lot some not so much and some have few residuals while many have more than one. The best advice I can give you is to educate yourself about this disease-read on this forum past posts and perhaps get Dr. Perry’s book. The more you know the easier it is to deal with doctors-you can help educate them. It is your body and you will know what you are feeling-that is most important. And, as others have said, I found the greatest help is rest-lying down before I get exhausted or the pain begins. Good luck. Jeff

Welcome, Sean! I’m new here, and new to GBS with lots of questions, too. I’m starting to wonder about relapses and residuals too…what’s life going to be like now. Seems the common denominator is we experience nearly all the same symptoms, just different levels of intensity. Doctors aren’t sure about my onset since I had 1 episode of tingling and numbness and that “out of body” feeling on 12-6 (thought I might be having a stroke). It started at my feet and traveled up to my head, arms and out thru my fingers. Felt as if I was sinking down into my chair. It went away w/in seconds, the only leftover feeling was fatigue. I had a severe resp. infection at the time. Put on oral prednisone the next day, for next 4 days. Got real clumsy and tired on the 11th (chalked it up to the infection) but had the numb hands and feet and overwhelming weakness the next morning, 12-12. PCP sent me to Houston by ambulance after hearing the symptoms over the phone, neuro in H-town agreed it was GBS but can’t say if episode on the 6th was onset or if it was the 12th. BTW, has anyone had GBS following a flu shot? I had a flu shot the week of T’s-giving, got the resp. inf. 10 days later, then GBS. Any vaccinations we should avoid in future? Thanks for answering my many questions, I’ll try not to ask too many at once.

Best wishes to all and Merry Christmas!

Carla