Coping with Muscle Spasms and Cramping in MG
Muscle weakness is the hallmark of myasthenia gravis (MG). However, at Myasthenia-Gravis.com, community members often discuss a variety of symptoms they have experienced since diagnosis, including muscle spasms and cramping.1
We had the opportunity to hear from our Patient Leader Jodi Enders about her experiences with muscle spasms and cramping with MG. Read on as Jodi shares how she copes with these symptoms.
Muscle spasms after an MG crisis
I started experiencing muscle spasms immediately after my first MG crisis began, characterized by spasms down my legs. This sensation forced me to stop and take a break when my legs weakened too much. It did not require repeated movement to spasm – the spasms would also occur when I went to walk after sitting in the heat and sun for too long.
Over time, my weakness improved as I was on Mestinon, prednisone, and CellCept. After almost a year, I no longer needed the Mestinon and began decreasing the prednisone. The muscle spasms in my legs stopped after about 6 months.
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View all responsesLeg and neck cramps since diagnosis
However, I have noticed leg cramps every night since having MG. I used to take melatonin, but I learned that melatonin is not recommended for people with MG because of the risk of adverse effects. It helped put me in a deeper sleep to where the cramps were less noticeable. Now, they keep me up a lot of the night. They feel like shin splints but from my upper thighs to my feet. I was hoping once I was off of the Mestinon that the cramps would stop, but that was not the case.2
I also notice neck cramping every day since having MG. I believe this is from my neck weakness from holding my head up for too long without resting it against something.
Trying to talk to the doctor
My neurologist does not associate cramps with MG. However, since moderating on Myasthenia-Gravis.com and advocating for MG, I realize MG doctors do not often associate much other than the primary symptoms as being MG related. However, it seems many of us with MG have cramping, pain, and urinary issues.
My doctor suggested I could have fibromyalgia in addition to MG. I have not followed up with this as my MG was confirmed with testing. All my symptoms are associated with MG and are often experienced by others with MG. It could be a possibility I have both.
Coping with muscle spasms
When I experienced muscle spasms during the day earlier on in my MG journey, rest helped. I haven't found too many options to help the nightly leg cramps other than a massage before bed. But that's hard to convince the boyfriend to do after he is sore from working outside all day.
I have wanted to get a leg air compression massager and heat therapy electronic device. Last year, I traveled around different state parks in a van with my boyfriend and cats; space was too limited to have them. Before then I had not thought to look into such a device. Now it won't work with my budget but hopefully soon.
Relief for neck cramps
For my neck cramps, I have found that Taspen's Organics "No More Aches PLUS Relief Cream" is the only thing that will provide some relief. The ingredients include herbs of arnica, calendula, St. John’s wort, and more.
After getting to know a boutique owner and MG coming up in the conversation, she gave me a sample jar of this stuff to try. It is very different from most muscle rubs as there is no harsh smell and you don't feel like you're going numb from it.
Also, if I am consistent with my yoga practice, I notice my neck cramping less.
Impact on activities and sleep
The leg spasms I used to have made it difficult to commit to any physical activity, like paddle boarding or fossil hunting. It was unpredictable when the cramps would hit, and I was worried about a crisis or situation while far from my car.
Most significant are the nightly leg cramps that make it challenging to get enough quality sleep. I need a total of 8 hours at a minimum for my body to function as well as it can and so I am not grumpy all day. But I also do not want to mess up my routine and schedule by sleeping past when I planned.
My body never feels good from the moment I wake up, probably from tossing and turning all night to try and find a comfortable position where the cramps are less noticeable. No position helps, so I end up in funky situations all night that leave me feeling sore with tight muscles the next day.
My neck cramps bothered me so much that I avoided leaving the house. Now I am a bit more used to the sensation of the kinks and I notice them less, making it easier to distract my mind.
This or That
Have you tried any of these coping mechanisms/tools before?
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