I am 54 and have had Friedrich’s Ataxia for 22 years. Recently I have found that I am so stiff that I find it difficult to sleep on my side. This is a worrying development as I have always slept on my side and have never had serious problems with my sleep. I have been trying to sleep on my back but so far I just can’t get to sleep this way. Does anyone else have this problem and do you have any tips to help?
Hi Jonny Marchesei It’s nice to see you back here. I don’t have FA but I’m also suffering from increased stiffness, I find it awkward turning in bed, and stiffness sets in after I’ve sat in one position even for a short time. I’m in two minds as to whether it’s due simply to lack of exercise, or muscle atrophy due to progression of my ataxia. Currently, I’m not taking medication, but I’m aware that there are medications for those who want to try them.
I also have FA and can’t sleep on my back. I’ve tried everything but as soon as I’m on my back I’m awake. If I do manage to start falling asleep i’ll get a little nauseous or feel like I’m falling then am wide awake again. I can only fall asleep on my sides or stomach but those positions either hurt my neck or hips after a while so I find myself changing positions a lot when I sleep. I’m in the same boat as you, Jonny!
Thanks to both of you for replying. At the moment I still sleep on my side with difficulty but one day I assume I will have to learn to sleep on my back. By googling ‘how to sleep on your back’ or ‘sleeping positions disabled’ I have found a lot of advice on learning to sleep on your back. I have just ordered an orthopedic pillow, which is supposed to make sleeping on your back more comfortable. And further down the line there is always the possibility of getting an adjustable bed.
You might a pillow under your knees. Might help.
I sleep on my side & also have FA. I have also been having trouble as my hips & shoulders feel stiff & sore in the morning. I have now started sleeping with a small pillow between my knees & a pillow behind my back. I try to twist my torso a little, so I’m resting my shoulder on the pillow behind me. It also helps if I need to turn over at night. Hope you find a way that helps!
Thanks for the tip,Sheryl. I already sleep with a cushion between my knees. I might try the pillow behind my back too.
Hey JonnyMarchsi, Like you I find it extremely difficult to sleep on my back. I also googled “how to sleep on your back” and one idea involved tying or taping marbles to your pajamas so you’d wake up to turn on your back again. I can’t do it! Have you found better solution? BTW, get that adjustable bed! My wife is in love with it. Happy wife… happy life!
Hi Henry. I bought myself a special orthopedic pillow, which is supposed to provide better support for your neck. I don’t think I’ll be able to sleep on my back until I get an adjustable bed. I have a riser-recliner chair which allows you to elevate your legs and head and I can sleep on my back in it so I guess an adjustable bed would have the same effect. I’m sure it would take a while to get used to sleeping this way but hopefully it will be possible in the end. For the time being I sleep on my side.