A person clutches their shoulder in pain while an image of a large muscles spasming hovers behind them.

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. This is incorrect; it is different for everyone. For example, one girl I met through Instagram suffers pain and swelling in her knee and leg, and uveitis from AS. I never have that issue. Sometimes my right hip and right leg would be in pain, but I don’t have the same symptoms as her.

I suffer badly with upper back, shoulder, and neck spasms, whereas other people don’t. These spasms are very intense. Since May of 2020, I always have 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 had been asking since August and 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.

Finally, I was listened to

In December he listened to me and sent me an MRI. The MRI showed that my cervical spine has straightened when it is supposed to be curved. This is why I have constant spasms. I only found this out at the start of this year.

The spasms differ from day-to-day. Some days 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, 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.

What sometimes helps my muscle spasms

The only thing I have found to temporarily stop the spasm is to take diazepam. This is highly addictive so I can't be on this long term. Normally, I get a week's prescription of 5mg of diazepam every four months. I constantly think, there must be something else to help them. Instead, I have constant spasms for nearly a year, except for one week every 4 months.

I have tried physiotherapy, topical creams, and exercises that should help. It doesn’t. Some topic oils, such as CBD oil, helps temporarily. The same with physiotherapy, it might help for a couple of days. I need something that will help my spasms long term.

When you google AS, it does not mention spasms. After intense googling, I may find a few articles by individuals with AS having spasms, but it seems nothing like the level of mine.

Do you get muscle spasms? If so, what helps?

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