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.

Hi Cindy

Sound like you are struggling, but your attitude will serve you well. I don’t think non-musicians could possibly understand how much is robbed when you can’t create music anymore. I tried to never give up. At first in my illness my djembe was my only solace. I remember putting on really heavy music, like Black Sabbath and TOOL and sitting there as long as I could. It didn’t sound very Ghanian at all, but it served to help ease my initial rage.
Wow, you sound like you have some very nice guitars. That Alvarez (Yari) sounds and looks beautiful! Does yours have the beautiful abalone work done around the soundhole? My only acoustic is a decent Yamaha that I had a bone nut and saddle installed on. I know what you mean about the 12-string, I already sold mine. It was nothing special (just an Art and Lutherie) and I figure if I change my mind I can always acquire another one. Sorry you sold the Gibby. I love the ES-335! I have a great Japanese copy, but I think I may trade it away for a lighter axe. I like the idea of a Gibson SG with P-90s (think Santana, Terry Kath, early Tony Iommi!).
My fingers lock up and don’t do as they’re told as well. For some reason, I have the worst time playing a basic D chord because my ring finger almost NEVER makes it where it’s supposed to go (it always hits the third string, if I’m lucky I muffle the second!) Hand stretches help somewhat, there is a good youtube video called ‘Essential Hand Stretches’ that I learned a lot from. I also have found that warming them up before hand can help a bit.
Have you seen ‘It Might Get Loud’? This is a very cool movie and tribute to the electric guitar. Jimmy Page (Led Zep), The Edge (U2) and Jack White (The White Stripes) are profiled. The movie explores their individual styles but also brings them together for a soundstage summit where they trade licks and talk influences. Seeing the look on the Edge’s and Jack White’s face when Page teaches them ‘Whole Lotta Love’ is worth watching alone (hint, they look like humble children in awe). You might like it, I really enjoyed it (and no you don’t have to be a fan, there’s plenty to like in this movie fr ANY musician).
Rory doesn’t know where he got CIDP or how. He just keeps plugging along and I’m really proud that he doesn’t give up. I’m glad you haven’t either. You may have to change how you play, but there could be a possibility. Perhaps the piano is your best option. Synthesizers can be fun too (I have an old Roland JX-3P).
I hope we can stay in touch. if you wish we can ‘meet’ here or I can send you my e-mail address.

P.S. Your Dad is Mikmaq? I suppose that means you are on the East coast?

Best

Hey Mark

I’m back part-time starting in April, hoping to get back to full duties by the end of the year.

spammer^^^^^^^^

Missed you Tina!

Thanks!