Muscle twitching

Hi everyone! I’m new to all of this and I had no idea there was all this support out there. I was diagnosed with Chiari and had spinal decompression surgery in 2009. My only symptom when I was diagnosed was my left hand was deforming. Also, I noticed I could not run and I could not step down hard off a step or jump without feeling severe electrical pain throughout my back. I have a sryinx almost the entire length of my spine. NOW, it’s been 4 years since my surgery and I’ve been having migraines for several months (about 2-3 per month) and bad neck pain. My most pressing matter that my doctor hasn’t really addressed is the SEVERE muscle twitching that keeps me from sleeping. It is the worst in the back of my left arm. It spasms so badly that you can see it if you’re looking at my arm. Anyone experience this? Not sleeping is driving me crazy. Despite this and my other body pains, I have never been prescribed with any medications.

Hey Stefanie,

I also have a syrinx and the only symptoms I had when I was diagnosed about a year ago was bad back/neck/joint pain. I have also experienced twitching ALOT for the past few months. I get them in my legs, fingers and arms. I don't know about you but I also get them in the bottom of my spine for some reason so my whole body jolts. Ive heard a lot of Chiari suffers have the same problem, but I have never been told why it happens or if its a problem. I haven't been put on any other medications other than pain killers. Hope you, we, get some answers!

Thanks, Emily! I hope you/we get some answers soon also! It seems as though my body is falling apart all of a sudden so it’s nice to know I’m not alone with what I’m experiencing. I also have the twitching in my hands and my legs but not my leg twitching isnt that bad. I just feel like it’s such a waste of time and money to keep being ignored at the doctor or just going for what seems to be pain management without actually knowing what’s going on.

I feel exactly the same way. I'm 18 now, but I feel like I'm stuck in an 80 year olds body! Everything hurts, and doctor just says I shouldn't do surgery. To me, going to the doctors just feels like one big circle. I go in with pain... we pay for tests... then they say 'Sorry cant help. Bye' and I go home with nothing. If only there was a magical pill, or maybe that's just being naïve.

Abby, thanks for the helpful info! Emily, I understand completely! I was 19 when I was diagnosed and had surgery right away. Conservative doctors will say no surgery because you are young and they don’t want you to end up with more problems and additional surgeries your whole life. But i understand because I’ve been there and at 18 the last thing you want is to deal with symptoms and chronic pain that nobody understands or believes. It’s been 4 years since my surgery and in that 4 years, I was pretty stable until now. I’m 23 and I’m not interested in more surgery but I think it’s a sad reality for alot of us.

You’re a lifesaver! Thanks so much! I’m going to try it all out.

Me too!