Night spasms and insomnia

[Singalong1]

Hello. I have back spasms every night, causing serious sleep disruption and some distress. This has been going on for the past 5 months. I get only 2-3 hours uninterrupted sleep and I’m exhausted. I had thought I’d try Melotonin to help with sleep, but I hear it’s not advisable to take when on Pred. I’m frightening myself with possible causes for the nightly jerks, such as MS or ALS!!! I called my GP and he advised me to contact Physiotherapist at Kings (London), who I had seen before re back problems (disc bulge that has since resolved itself). I wait to hear back from him. In the meantime, does anyone else have this symptom? Could it be related to PMR? I’m feeling very anxious right now.

[piglette]

I never sleep for more than two hours at a time since being on pred and it takes ages to get to sleep.

[Singalong1 in reply to piglette]

Thanks Piglette. Sorry you also experience poor quality sleep. Do you also experience back jerks at night? This is what’s particularly worrying me at the moment, as I fear it could be symptom of something more serious. But I have also been a poor sleeper. Currently, I’m reducing Pred (from 15mg December 2019) to 6 mg. So slow taper. Have you tried Melotonin? Can someone remind me of the problems with this supplement, and Pred please?

[PMRpro Ambassador in reply to Singalong1]

It is thought that it might reduce the immunosuppressive effect of corticosteroids so it might make the symptoms worse again so you need a higher dose.

Have you tried different sleeping positions? Such as on your back with a pillow under your knees or on your side with the pillow between your knees? I get back spasms too but never at night! Something that keeps the area of your back that spasms warm might be helpful - that's what I use during the day, I sit against a hot water bottle. And have you tried taking magnesium supplements? They are recommended for night cramps so might help.

Has your doctor any opinion about the cause? Has he done basic blood tests to check your electolytes and calcium/magnesium and so on?

[piglette in reply to Singalong1]

I get jerks at night occasionally, but I think I had them before pred. I used to sleep fantastically, I could go to sleep, anywhere and it usually took me about 7 seconds to get to sleep. Steroids put a stop to that. The only thing I have tried is cognac and the BBC World Service.

[Singalong1]

Cognac plus BBC sounds good, Piglette! 😊My body ‘jerks’ are every night, (and when I lay down). Had this symptom for 5 months and counting. Mysterious.

Thank you for your advice, PMRpro. I’ll hold off on the Melotonin.

I usually sleep on my back with a cushion under my knees, and when I turn on my side (which I do quite frequently, as I l’m awake for several hours), I place the cushion between my knees. A more comfortable position for the back, but does nothing to alleviate spasms. I take a magnesium, zinc and calcium supplement. I try to stay hydrated. Can’t think what else to do! I rang GP, he didn’t suggest blood tests. just advised me to contact my Physiotherapist. Which I did; he called me earlier today. He will refer me straight on to neurologist for assessment. However, he advised me to ‘sit tight’ as an appointment could be a long time coming! In the meantime, all I can do is continue with slow taper and hope the spasms subside and sleep improves. And try not to worry!