not enough sleep

[RajSangha]

I have never been much of a sleeper, but lately it has I have noticed I'm sleeping less and less about an hour here and there about four to five hours over a 24 hour period, if that is not bad enough I have started to drool when I do sleep and lets not forget about the cramp in my legs something new everyday but on the bright side my I,m getting out meeting friends again enjoying life

[Hidden]

Are you taking steroids? They can mess with sleep patterns. And as for the drool, well I know that one too, worst is when you fall asleep in public and do it. Try naps, it's not perfect, but they help.

[RajSangha in reply to Hidden]

yes currently I'm taking 60 mg daily, and I do take naps during the day

[Hidden in reply to RajSangha]

It'll be the steroids. Li Jo says, take them with breakfast, it helps, but you will still have some issues with sleeping until you taper down.

[bon-bon]

I don't sleep well any more either. I am up every couple hours during the night for washroom, then can't go back to sleep. I have the drooling problem as well. My facial muscles have been affected as I also now have a tremor in my jaw.

[Jo-Goode Administrator]

Most likely the steroids, take them as soon as your up in the morning.

[Hidden]

Hi Raj. No surprise you are not sleeping on 60mgs steriods. I remember it well. I was completely wired up on them and got no sleep and I became very anxious. I used to listen to Radio 4 on earphones or watch the TV to get through the night. Take the steriods about 5 am in the morning do that they have worn off a bit by late night and you can sleep. Buy yourself a cheap pocket pedometer from Amazon or Argos and walk each day, as the inflammation goes down you will be able to increase the steps and try to get it up to 10.000 steps a day, you don't have to do it all at once, work up to it, it will help your lungs, your muscles, your sleeping and your mind. The docs will start to taper the steriod as your blood work and strength improves, tapering the steriod is another journey but we can help you through that too. Walk, rest, eat good food that is well balanced. You will get there Raj, it does take time and patience and it's very early days for you. Best wishes. Mary

[RajSangha in reply to Hidden]

I usually take them about 9am with breakfast, but I am up at 5 so for cup of coffee I will take them then thank you

[Hidden in reply to RajSangha]

Hi Raj. Have a slice of toast as well as the coffee before you take them. Mary

[RajSangha in reply to Hidden]

at the moment I go for a walk once or twice a day normally for about 20-30 mins before I start feeling tired and weak

[Hidden in reply to RajSangha]

Hi Raj. It's great that you are walking but do only what your body allows you to do. It's important at this stage that you don't stress already over stressed muscles. Do what you can but don't push it, as your blood work improves you will know when you want to do more. Moving is an essential part of getting better. As my condition improved and with the permission of my Rheumatologist I asked my GP to send me yo a Physiotherapist to get me exercises yo do at home. I still do these exercises five years on. It's too early for you yet but it's in your future. Have a good day. Life returns after treatment for Polymyositis. Mary

[KevinBrennan]

I've had IBM for at least 10 years, finished taking steroids about 3 years ago but as the IBM progresses it affects sleep patterns. I would say for me it is the discomfort I feel, general muscle pain and soreness and cramping in leg muscles that just keeps my awake. Napping does help but can be inconvenient!

[Hidden in reply to KevinBrennan]

Hi Kevin, I'm interested that you report having muscle pain with IBM... the info sites seem to say that muscle pain is not usually a feature of IBM. I don't have a diagnosis yet but thought that my muscle pain perhaps made IBM less likely for me, seems your case proves there can be exceptions to the textbook symptoms. Have you tested positive for any autoantibodies?

[KevinBrennan]

I don't believe I have been test for autoantibodies, but I do have a confirmed sprIBM diagnosis.

I've had pain since the early days, mostly feels like cramps. Having met with many specialists it seems that there are some common issues with folk with sprIBM but also some folk suffer symptoms that are not common to all!

Not sure this helps