Muscle Spasms and Axial Spondyloarthritis
When you google AS, there is a specific number of symptoms and a definition of what you should feel like. But I think this is incorrect. It is different for everyone.
For example, one girl I met through Instagram suffers from uveitis and pain and swelling in her knee and leg from AS. I never have those issues. Sometimes, I have pain in my right hip and right leg, but I don’t have the same symptoms as her.
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View all responsesI suffer badly with upper back, shoulder, and neck spasms, whereas other people don’t. These spasms are very intense. Since May of 2020, I've always had lumps on my shoulders. These lumps are constant muscle spasms that are always there.
I asked my rheumatologist multiple times for an MRI and/or ultrasound on my neck and upper back. I'd been asking since August, but I was always told there was no need. I was told my spasms are caused by my shoulders taking the weight of my lower back and/or the stress from being in pain.
An MRI revealed my cervical spine alignment, the cause of my AS spasms
My cervical spine straightened
In December, my rheumatologist listened and agreed to order an MRI of my neck. The MRI showed that my cervical spine had straightened when it is supposed to be curved. This is why I have constant spasms.
I only found out at the start of this year.
What do my spasms feel like?
The spasms differ from day to day. Sometimes they are manageable, and I can get on with my day. Other days, they are so intense that I am afraid of them. I am afraid to move, turn my neck, or lift my arms, as movement may make them worse. They cause horrible headaches.
On bad days, the spasm will travel up my neck and then down to my lower back, my whole back, or more. Usually, one side of my back and neck will be in constant spasm for hours. And sometimes my legs.
When this happens, I need to limit my movements and activity levels. I will try gentle stretching exercises, but I always end up aggravating the spasm.
Finding temporary relief for AS muscle spasms
The only thing I have found to temporarily stop the spasm is to take Diazepam.1 But this medication carries a high risk of dependence, so it is not a viable long-term solution for me.
Normally, I get a week's prescription of 5mg of Diazepam every 4 months. I constantly think there must be something else to help them. Instead, I have constant spasms for nearly a year, except for 1 week every 4 months.
I have tried physiotherapy, topical creams, and exercises that should help, but they don't help me. Some topical oils, such as CBD oil, help temporarily. The same with physiotherapy. It might help for a couple of days, but I need something that will help my spasms long term.
Have you found long-term ways to cope with muscle spasms?
When you google AS, it does not mention muscle spasms. After intense googling, I may find a few articles written by individuals with AS about having spasms, but they seem nothing like the level of mine.
Do you get muscle spasms with AS? If so, what helps?
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