I hope the forum revives. My work blocks FB.

[QUOTE=jessicah]Good luck to you! I got mild GBS after the H1N1 flu shot 2 years ago. I am doing a lot better, but not 100%. It morphed into chronic viral issues, causing ongoing joint pain and fatigue. It is not ideal, but it is tolerable.

I have worked the whole time though. Worked at home for one month after the onset of symptoms and then went back to the office, an hour commute by train. I have 2 kids under 5, so they were 18 months and 3 1/2 when it happened to me and I kept up with it. I was never hospitalized, always mobile, but had lost reflexes, arm weakness, lost 25 lbs, numbness/tingling etc.

I wanted to give you some hope, that you will get better. I rested a LOT that first year, basically on the weekends and evening when I could. Make sure you rest when you are tired, do not push yourself or you will relapse with fatigue. I learned that the hard way. Hang onto hope….GBS will teach you a lot about patience, and what really matters in life. I am type A and I had to learn to accept that I can’t do it all and to be happy with what I can do.

Hang in there and stay strong!

Jessica[/QUOTE]
Your story sounds like mine, except my “mild” GBS started while I had the flu, not after a flu shot. I say “mild” because, although I was not incapacitated like so many here, I was absolutely terrified of what was happening to me. The skin on my entire body felt like I had electric current running through it all the time. I couldn’t sleep, eat, work or function well as a father & husband.

After my diagnosis, having an answer calmed me a bit. Still, it has never gone completely away, it simply varies in intensity. As long as I get plenty of rest, it’s tolerable (and sometimes I don’t even notice it for hours!). I’ve learned to accept the annoyance, and go on living my life. And life is good! 🙂

I still have some numbness in my scalp, varying in intensity from barely noticable to maddening. It sometimes spreads down to my face and neck.

There was another thread discussing “sensory GBS”. I’m not sure I fall into that catagory, but the title sure seems to match my symptoms. I’m still cold-sensitive (never was before), and my skin still feels like it’s sunburned, or like I have a fever.

I had been dealing with a prostate infection for a few weeks, caught the flu and that’s when it started for me.

It’s been a painful week for me, too. I was doing ok for a while, but for a few days now the tingling, shaking, weak legs, [B]sensitive skin [/B]have been working overtime…whew!

Thanks! I’ll be watching, too.