July 6, 2021 at 9:04 pm
Yes, I can walk with a mild limp. Non stop numbness in feet and 1 hand. I can easily walk a 1/2 mile. After that without a rest, I start limping badly in one leg. I do my own therapy. Very few doctors I trust and even fewer physical therapists.May 24, 2021 at 1:43 pm
Same boat as you, but only 3 years recovered. I still have a type of ptsd from the gbs and then drop the covid on top of that, wow! I got permanent “scars” from the gbs, numbness in feet and one hand.
But like everyone else with a disability, you adapt to it, and stop thinking about it as much.
How about that Fauci trying tell us not to get vaccinated? What a head f***.
Best of luck to you!March 30, 2021 at 3:15 pm
I got the 2nd Moderna vaccine 2 weeks ago. 1st shot felt a little off for a couple days.
The 2nd shot, I felt it “big time” for over a week. But my non GBS wife felt the same way.
So now, gbs or not, I am going to enjoy the outdoor life again……………December 27, 2020 at 2:01 pm
Well you can continue to live in fear, or you can get the covid vaccine, it’s as simple as that. I have chosen to not be afraid. Plus there are more actual GBS doctors telling me to get the shot rather than one misled public servant.December 23, 2020 at 4:48 pm
Fauci was the same idiot that recommended NOT wearing face masks in the spring. Anybody remember that? He should be fired!December 21, 2020 at 7:29 pm
Way to go Dr. Fauci. Now I have to remember to NOT mention to anyone I have GBS to get the covid flue shot. The numbnutz should clarify his statement after reading the “open letter” from the real GBS doctors.December 21, 2020 at 6:59 pm
Have you tried kratom powder? 4 – 6 grams in some koolaid. Works every time for about 4 hours. You can build a tolerance, so I just take it at night when the foot pain acts up. Mild exercise on the treadmill. For me 20 minutes for a half mile, using the handrail bars to control foot pressure. If I go over that, it makes it worse the next day. The lyrica gives me those tardive twitches, I thought I had them permanently, took a couple months to resolve, you could not pay me to take lyrica again.November 1, 2020 at 4:46 pm
I’m close to 2 years into my gbs/cidp/diabetic neuropathy? Personally I think it is all three. I just read that there is some weird diabetic neuropathy disease that 1% of diabetics get that matched my initial symptoms of being a lot worse in one leg, with extreme pain in the thigh. Thank god the thigh pain did leave after about 6 months. I still get bad foot and hand pain flare ups. I avoid lyrica now, due to side effects. I dropped the use of cannabis also for same reason. Just lots of hot baths and advil, and some kind of mental spiritual practice to keep sane. I wish your dad the best!September 21, 2020 at 8:17 pm
Yes, I love doctors too! Don’t trust some top 10 doctor advertisements, trust your own gut feelings.
Just recently, I started watching Billy Graham ministries on cable TV. It definitely helps to get a better perspective on the whole disease experience, there is only so much a doctor can do………April 17, 2020 at 2:49 pm
I have to admit my wife popped my bubble stating that cancer survivors go thru something similar?April 7, 2020 at 1:54 pm
Thanks Tyler, you made me optimistic, curious if you are over 40?February 4, 2020 at 1:31 pm
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.February 4, 2020 at 10:12 am
I am 65 and 14 months into my GBS illness. I just started walking without a “walker” at about 11 months. Have been exercising on a tread mill using the arm supports to lessen the foot pain. I have been taking Lyrica for the nerve pain which is worse in my feet and then my hands. I had twice as much nerve damage on my left side which I am grateful for, because I was able to escape having to use a wheel chair. I did not respond to IVIG at all. Never tried PE. Your father received much better treatment than I did living here in San Diego, USA is all I can tell you. Lots of bad doctors here.
They have a few centers dedicated to this disease, but good luck getting to one. I would try contacting one of those.January 19, 2020 at 12:02 pm
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.January 9, 2020 at 2:49 pm
It’s the BENEDRYL. That stuff makes me wacky. Try some red kratom 4-6 grams in some koolaid to help with sleep. Been using it for almost a year regularly. Kratom got me off of Oxycodone also.
I buy from cali botanicals.