Reply To: Lots of Questions

Hi CJ

Sorry to hear you are struggling. My case was not as severe as yours, so please take my advice with this in mind.

‘For folks with sensory nerve damage and severe nerve pain, what meds have helped and at what dose?’
-I took Lyrica for a long time. I don’t think it helped much and just kept me stoned for a year and a half. Who knows? Maybe this in itself helped me, but I would never recommend addiction to anyone. When I switched neuros, my new one said I shouldn’t be taking them. For me, getting off a max dose was long and brutal at times.

‘Is the muscle wasting likely now permanant, or can that be reversed with exercise?’
I know the wasting is caused by the nerve damage, but I firmly believe that inactivity is a factor too. You sound like you are keeping busy, that’s fantastic. No doubt, getting c-diff was no help (hospital gift I reckon?)

‘Is there anyone on this forum who had tremor that went away, or is tremor likely permanant?’
I used to get tremors, especially at night when just getting into bed. I found they increased the more fatigued I became.

‘Still spending a lot of time in bed due to pain – severe pain. Force myself to be up for 4 hours daily. But that’s about all I can do. Is this normal for recovery at 15 months?’
Everybody’s different. The rest/activity balance is difficult for everybody. Just make sure you get plenty of both.

‘What is a reasonable amount of time to be up and moving each day? to be exercising each week?’
Rest when you need it, be active when you can. Not a lot of help, am I?

‘What supplements have helped others?’
Shark liver oil or some kind of fish oil, B-12, B-6, D, Ginseng, Maca, Glucosamine Sulphate, Probiotics (for a healthy gut), everything else from healthy eating. I tend to eat a lot of protein for muscles.

‘Has acupuncture helped anyone on this forum?’
It didn’t do a thing for me and I felt ridiculous. Maybe you have to believe in it more? I dunno. I have found massage therapy to be extremely beneficial.

‘Am also experiencing hair loss. Is this something that people with GBS typically experience?’
I didn’t but I haven’t heard this from others.

Nothing you could say here sounds stupid to anyone. It can be good to talk to someone who has made the best of life with residuals. I have met people who feel they have made a full recovery. However, they were younger than me when they were struck. I have also met folks making the best of life despite having residuals. I like to think of myself that way.