Responding to Terry S. I am 14 months in recovery, and my goal is just to be able to drive my truck again. What stops me, is my concern about my general energy level and how far can I walk without getting overwhelmed with foot nerve pain. I was forced to do some back yard weed wacking for my little dogs. I worked for about a 1/2 hour till I was totally exhausted. I was down to just 2 – 25 mil. Lyrica’s a day. The next day my foot pain was so severe I went back up to 150 mil. of Lyrica and even that did not work. This pain has lasted 4 days now. I was wondering if I should “get back on the horse” (former marine) and try it again in a few days, or just stick with the basic treadmill exercising I have been doing for about 6 weeks without any major pain? Its a waste of time talking to a doctor about it, they are clueless.

Hello Cathy, hope you are doing better at this time. My “band tightness” has slowly subsided, I still get it but minor though still scary, at this point. (14 months post initial symptoms). I thought today I would try the CBD for my hand and foot nerve pain instead of lyrica. That stuff will make you daffy after awhile. If you need a bathtub “elevator” let me know, I will ship it to you free of charge. Amazon link description below.

Thank you for the heads up on Cipro. I had a work buddy went to the E.R. due to it. It puts me into some form of “toxic shock” after a couple days of usage. I will be cautious moving forward with all prescription drugs. (1 year post GBS)

I still deal with daily discomfort at this point not as much pain. Numbness still exists in my feet and hands and occasionally my diaphragm muscle. (thats the scary one), and this is a full year post diagnosis. I only take 100mg lyrica a day. Kratom’s like drinking a couple beers at its best. Pot is a good pain distraction. Trick is to find the right strain. (Some strains can make you more sensitive to the pain) Looking forward to the day that I can stop all three “meds”. Best of luck.

Nothing personal, and sorry I was not more uplifting. I was in the same boat as you as far as walking. I could always hobble around using a walker too. I learned more about this disease from my IVIG nurse. (it made me worse). She covers all of southern california. This disease is much more prevalent than I thought. She told me that since I was able to actually hobble around that I would be fine. She was right.

If Kratom is not illegal in your state, I would suggest it. I can supply a good link for purchase.
Worked wonders for me in combination with Lyrica, which is dirt cheap now having gone generic.
I also smoke alot of pot. I am officially a year in, and just trying to get to the point where I can drive again. I don’t trust myself yet, as my one bad leg can still numb up pretty good and I get just physically tired fast. Stress seems to be the biggest setback mechanism. So avoid it at all costs.

Here’s my go to pain relievers after getting off of 3 months of oxycodone initial usage.

Lyrica – down from 150 to 50 mil. max per day due to side effects. At least there is a generic now.

Kratom – down from 16 grams to 8 grams per day of the red vein. There is absolutely no type of withdrawal from this stuff. Don’t trust what the web says, and it is legal except in about 5 states.

Cannabis – the “gorilla glue” strain works the best now, you don’t give a crap about anything. (I’m retired) smoke it all day (San Diego). I remember thinking the THC extracts I used to smoke had given me the disease. Ha Ha

I did use 50/50 CBD/THC vapes which are all over the place in California, and it worked somewhat.
But the gorilla glue trumps it at this point.

I can almost walk normally at 10 months post GBS. Even though feet are still half numb, and two fingers on one hand still numb. I remember when I couldn’t even open a soda bottle. Mentally I feel 100% recovered.

Currently going thru a high dose vitamin D regime as my doctor said it was only 12 out of a 30 – 100 blood test range. I also read on web that the government did a study of people with some type of neuropathic disease and they all had low vitamin D? I do feel better from it.