Intense Muscle Spasms every since Shingles

[Sarahlm]

Almost 3 years ago, I developed shingles. It was a really bad case. Every since then, I have had intense muscle spasms. I get muscle cramps all over my body constantly!!! Neurologists have done everything, "within their power" to figure this out, I have no insurance, I am self pay, I am only 27, (( it first started when I was 24)) I have had a catscan, ekg, you name it, seems as if I have done it!
My diagnosis is "Chorea"(( I have involuntery muscle movements frequently daily my toes move all by themself as well as my fingers. I also have my twitches all over my body constantly)) but no medicine seemed to work for longer than 2 weeks, I am tired of living with this pain, everyday, for the past 3 years, waking up in the middle of the night with severe charlie horses that lasts for most of the time at least 8 minutes. The other day I had a very bad episode. My whole body was cramping all at once!! It was the worst pain I have experienced in my life! Today, I had another episode with the same scenerio, just crying and screaming like a baby, I cant move, it seems as if I dont have any control over my body! Very frusterating, very painful, and it is very old!
If anyone has any suggestions, or input, please... PLEASE! Let me know, I would really appreciate it! Thanks for reading...  

[Quietthyme60]

I had shingles in June this year. Now I'm having spasms like you and Sarahim. I' m on gabapentin for neuropathy,DDD, herniated and. Uldging disk at every level in my back. I also have an implanted neurostimulator for my nerve damage, due to my back problems. My friend had a cream made for her by a pharmacist that contained, baclofin, gabapentin, lanocain.  She tried it on me and what a blessing. I know how excrutiating that pain is. I only go to an er as a last resort but the pain was so bad I was thinking about it. But thought what would they do? I am on opioids due to chronic pain, nothing was touching the spasms,you could see the knots under my skin all over the left side of my body from neck to toes. Hope this helps.

[des97cass99]

I too have shingles (reoccurring) for the past 15 years. In the last 2 months i have had shingles 4 times -- now I am getting painful leg and feet cramps especially at night. Exactly as you are described. Excrutiating pain, wondering if anyone else has this with their shingles. And who do you see? I went to a pain management doctor yesterday who gave me lyrica and basically blew me off. Funny -- I go to the ER and they give me more sympathy and understanding than the PM doctor. Uggghhh

[LivingInHope]

I am sorry you are having such awful pain!  Have they made sure you don't have low potassium (which can cause muscle cramps)?  A friend of mine took neurontin, tried acupuncture and used ice for his shingles.  He still had flare ups on his head where it bothered him last I knew and was using a soft ice pak.