Muscle spasms/tension decades after GBS
March 7, 2023 at 1:05 pm
I had GBS in 1992. I was not on a ventilator, but most of my body was affected with numbness/weakness/paralysis. I seemed to recover fully, but then had what seemed like a mild relapse in 1998 – I mainly had trouble standing and walking for a couple of months.
For the past decade, I’ve had a lot of trouble with pain in my back and butt area. I deal with almost constant muscle spasms, but no clear answer as to “why” I’m having this pain. I’ve been prescribed a number of different medications with minimal or no help. One medication, gabapentin, actually made the pain/spasms worse.
My current neurologist thinks that my problems could be due to having GBS all those years ago. I’ve had recent nerve conduction studies, and he said he can definitely see from the results that I have residual nerve damage.
I am just posting this to see if there are others with a history of GBS that deal with muscle pain/spasms, and if anyone has found something that has helped them.
November 20, 2023 at 6:25 pm
Just saw your post. My onset of GBS was ten years ago and very severe. Wasn’t intubated but had a limited recovery. Showing extensive axonal nerve damage all over my body. Wheelchair dependent at first then progressed to a walker, then two forearm crutches now only one. Gait and balance issues. Spasms are better by using magnesium I take CALM. Works fairly well.
So for me I have had to deal with moderate to severe nerve pain especially from waist down. So while I have learned to cope It goes up and down but Never ever stops. Unfortunately my problems have worsened and with testing it is indicated that I now have CIDP and will be starting treatment very soon. Hoping you can achieve a degree of manageable recovery David
February 27, 2024 at 3:20 pm
I had gbs 18yrs ago. Wasn’t ventilated, no treatment because I was told it was anxiety. It was not.
I still have out of the blue weakness in my legs and sometimes arms. And, I often have muscle spasms in legs and lower back. The muscles will also start burning as if I overdid a workout. The only thing that’s worked for me is Cyclobenzaprine, warm Epsom Salt baths or a good magnesium supplement. These don’t work to relieve 100% of the problems, but helps keep it at a tolerable level. Since it’s been so long, I don’t think I’ll ever not have these residual issues.
February 28, 2024 at 10:37 pm
Fairly odd mother,
I have slowly cut back on my drug use for GBS pain. What is definitely working for my leg pain now – Tramadol HCI ER 24HR 100 MG – this is a 24 hour time release. I take two.
The medication is great. However, it has been a real pain in the ass to deal with at the pharmacy since I am retired military, local military hospital does not carry it, and Tricare for some reason won’t pay ……. but Tricare are being total jerks and keeping it to precisely 30 day. They day I run out – is the day I can get it refilled. And if that falls on a weekend I have hell to pay even with a civilian pharmacy.
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