Insomnia- Fibro, RLS and with central nervous system hypersenitivity

Does anyone else suffer from this I have had sleep studies done and I wake up every 2 hr. to reposition myself and I move my legs about ever 20mins. I need sleep and nothing I try can keep me asleep for more than 2hrs. my doctor know that the pain is the reason that I reposition myself so often and without restorative sleep my body cause restore itself. We haven't found a pain med that helps so far. I take sleeping pills but I still wake up every 2 hrs.

17 Replies

oldestnewest
  • Hello Rosetta. Has your doctor tried you on Amitryptiline, It helps quite a few of us with both pain and sleep. Also is it possible that you could be suffering from restless Leg syndrome. This is something that would keep waking you up to move your legs and there is treatment for this.

    Hope this helps sue xx

  • Hi Rosetta, i too take amitriptyline, same as Mayrose. But what i found helped me was vitamin d prescription. Hospital checked my vitamin levels and found them very low. Apparently this occurs a lot with fibromyalgia, it affects the muscles and lack of it causes more pain and spasms and restless legs at night. I hope you get some relief and some much needed sleep soon,

    Shazzzy

  • My Vitamin D levels were very low so I was prescribed Vitamin D2 50,000 units capsules once a weekly. I have been on it a year unfortunately it doesn't help with either pain, cramps or insomnia. But I am really glad they help you.

  • No I never heard of amitriptyline but I will ask my GP, my vitamin D levels were low but I'm now taking 50,00 unit /wk,

    Thanks Much

  • My sympathies go our to you as I am exactly the same. Without sleeping pills I am lucky to get 2 hours through the whole night. With them I probably get about 4 but just like you wake up after 2 hours, drop off and then get another 2 hours and then that is it. I always find myself in a different position and in pain so I reckon it is the discomfort that is causing it. I have to put my hands up to say I have always been a poor sleeper but as you say we all need our restorative sleep with this complaint.

  • Hi Rosetta2014

    I am so sorry to read that you are suffering in this way and I genuinely hope that you can find some resolution and relief to these issues. I am an insomniac and as a result I never sleep more than 4 to 5 hours a night. I sit up all night writing mostly as it is more desirable than just laying in bed waiting to sleep!

    My fatigue has given me 'confusion and memory issues' just recently and I have been having tests undertaken to make sure it was not dementia. Luckily it wasn't! I am really sorry but I have not got an answer for you apart from what the others have said about Amitryptiline?

    I want to wish you all the best of luck with finding the answers that you desire and deserve.

    All my hopes and dreams for you

    Ken x

  • Thanks Ken, like everything else about this disease there is no answer. Well I stopped laying in bed trying to sleep I just continue on with my day and eventually I will nod off in my chair at the computer or watching T.V or listening to music. I have a hoveround chair because there are times when my back gets so bad I can't walk or stand. I also found out that I walk in my sleep when I don't sleep for days. My husband discovered this the next morning when I had yogurt in the bed on the floor from the kitchen to the bedroom and all over my gown So after we figured out it and had a great laugh. See I had to have gastric bypass because my thyroid was making me gain and they couldn't stop it, it got up 8 to 10 lbs a month. Well we figured that because I was to exhaust to eat that day and I must have at least 60 to 90 grams of protein a day I was trying to get the yogurt it has 13 grams. thank god I didn't try to make a protein shake. LOL

  • Hi Rosetta2014

    It is funny that you should mention sleep walking, as when I do manage to sleep I suffer with night terrors and I am all over the place! I have one specific recurring nightmare and it is really weird! Maybe it is par of the course with the illness?

    I genuinely hope that you can get this sorted out for yourself?

    Good luck

    Ken x

  • Ken, that's funny I don't even think I dream. LOL

  • I'm on nortryptiline because I sleep so badly, but even on that I wake up every 1 - 2 hours. I listen to audio books all night, they help relax me so I can doze a bit even when I can't sleep. I use headphones so I don't disturb my OH. My local library get them for me. I do recommend them to anyone who can't sleep.

  • I do sweetheart, I went to a pain clinic and take Opana ER 10mg twice a day, and it helps the Fibro, and RLS. Hope this helps!!! xxx Mitzi

  • I hope you don't feel insulted that I ask if you have done internet searches fo get advice on treatment and causes. If you read them, you might be able to discuss it with your doctor better. (But you've probably done this already.)

    Some people respond to muscle relaxers. I can't take them. They give me morning headaches and icrease my fibro fog, lol.

    I have on rare occasions had RLS, though I don't have a clue why, where my legs not only felt uncomfortable and sensitive to the touch, but would involuntarily jump off the bed.

    Whatever you need, I hope you find it soon. ((((0))))

  • I don't feel insulted I glad you care enough to ask, and the answer is yes, that is why I ask the Fibro community to see if I was missing something.

  • Try 10 mgs of cyclobenzaprine its a muscle relaxer that puts me in a near coma. Help the muscle pain too, take hour before bed and don't plan on functioning at all. Perhaps mention this option to your doctor.

  • 18 years ago I was prescribed Flexeril (cyclobenzaprine) my first muscle relaxer and it did nothing. So they tried me on Soma for a while among others and they helped a little I am now on tizanidine (Zanaflex) It helps a little more. but it does nothing for RLS and pain it barely helps the muscle spasms. I also take trazadone as needed for sleep the problem is I will go to sleep but I won't stay asleep I only sleep 2 hrs. no matter what maybe 3 on a very good night.

  • I don't know if you have seen a specialist. I don't know what kind this would be. But if you are only dealing with a general practitioner, you might need more consultation. I am sorry that nothing has worked for you so far and I can only hope that a resolution of your pain is not too far off.

  • My Doctor is a Pain Specialist and and Pain Psychiatrist who also does research in Fibro he took me on because nothing has worked for me I have be with him for 6 months now and so far 100 mgs of Sevella twice a day is helping with my fibro and a new med I started 3 days ago Buprenorphine 8mg is helping with my back and fibro pain I have a Neurostimulator implant in my neck and back the one in my neck is find but the one in the back no longer works it was problematic from the start it stopped working 5 days after being implanted but my doctor tried replacing the lead which resulted in it stopping again and having to be removed month by a Neurosurgeon. So I was a mess when he got me and he explained I needed agressive therapy which none of my other pain doctor was willing to do they all worried about me becomming addicted to a drug before even trying it. So we are making progress with the pain. But he is very concerned that I keep waking up every two hours because I not getting restorative sleep.

You may also like...