Scleroderma & Raynaud's UK (SRUK)

Spasms/seizures. Any idea?

I don't know if this is in the write section but I'll try. The last 11 weeks I've been ill. I've had streptococcus, ear infection in both ears, off balance, shortness of breath. But my main worry is I've started having massive spasms or seizures. And I mean massive. My whole body starts violently shaking & feels like my muscles are tight & too short for the coresponding body part as well as being painful that I have to talk to myself to keep calm & breath. Otherwise I'd hold my body firm. My GP, paramedics & A&E have seen it but last night got really bad that it kept coming on every 15 minutes. But as my blood came back clear A&E discharged me even though I couldn't walk as my legs were shaken & I was still spasming. Could raynaud's cause this or exacerbate it? I know I need to see neuro but I've been once & they said vestibular neuritis.

4 Replies

Hi Emington

Strange I had the massive violently full body shaking spasm that lasted for hours, a few years ago in the middle of the night. I also suffer with Raynards badly. I ended up with cellulitis in the morning, in my left leg and blisters caused by having both legs swelling badly. I was so scared and the pain was terrible. It happened as I had a really bad cold virus at the time. Not sure if it was all linked. They have since found out I have systemic scleroderma now along with raynards in my feet and hands. People just do not understand these illnesses and why we are always so cold in the summer months too. I hope that they help you and you feel a lot better. I know this will jinx me. It only happened the once to me. But I was so scared, it was the most frightening thing that happened to me. take care


I too have been having what I call the shakes. My left side of the body was the worst. This got progressively worse over the year. My husband video 4 episodes that we could show the neurologist who specializes in involuntary movements. He said the videos were great because he could rule out several things. He diagnosed it as strumming (his term). I have been on Vimpat for a year (2) a day and have only had 4 movements. Good luck hope they can find what can help you


Forgot that I have scleroderma with pulm fibrosis, ph, raynoids, and gastroasis. This disease is ugly


I suffer from esophogul spasms and spasms in my head and arms and ribs. I got so bad I thought I was dying. I lost so much weight and was so Ill. I now have a normalish life due to taking amitripline. I would be a complete mess without it. I still get spams and they are so bad but nowhere near what they were like. For severe spasms I take Valium, it works wonders. I don't know if this will help.i hope you get them under control. I have limited scleroderma.


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