Hi Guys -

So frustrated. I've been working with a sleep Doctor for about 9 months and no diagnosis yet. She is very confused about my sleep study results.

I have RSD/CRPS Type 2 with nerve involvement - Severe small never fiber neuropathy. I manage way better than I should some days and I feel like even though I have issues I'm so much better than 9 years ago me when I had the injury. Lately I've been a wreck in the sleep department though and trying to figure this out.

My husband says I move my legs every few seconds and kick and cry - probably in pain as my RSD is primarily legs. I have a restless leg syndrome diagnosis, but I'm not sure if we can differentiate. This carries over into Periodic Limb Movement Disorder while asleep - which can be its own diagnosis or a symptom of others. I wear a fitbit to watch sleep trends and out of a 9 hour sleep night it gives me roughly 3-4 hours of "sleep", very broken. The sleep study confirmed that this was pretty accurate, though it didn't record as many leg movements as I know I have based on my husband's feedback. In any case, it gave me the PLMD diagnosis but we don't know what is causing it.

I did not respond to RLS medications. My Ferritin levels indicate RLS and we've been bringing that up with super doses of Iron but it is not helping. We did a trial of narcotics and if it was RLS that hypothetically should have relieved symptoms but it did not. We're looking into Narcolepsy next, but I don't quite fit there and the testing is months away. I'm just not feeling this. The Doctor said it could be an RSD/CRPS side effect but that's lazy Doctoring right there. There COULD be a link for sure so I am turning to you guys to see how your sleep is and if anyone has received a diagnosis.

What we see on my sleep study. I go right into REM sleep, so she said that suggests chronic sleep deprivation. The REM sleep is too short. My sleep gets progressively more broken as we get closer to morning. The leg movements often proceed jumps in brain activity and wakefulness which is atypical that the brain activity is lighting up the way it is and preceding the movements. My guess is that it's a pain signal? I could be wrong. I did move quite a bit and had some apneas but I did not drop O2 levels during the apneas so they are not true apneas and I was told to sleep only on my side moving forward. I do have good dreaming activity - and a small amount of acting out dreams.

If any of this is sounding familiar to anyone please let me know and any other symptoms you have regarding sleep and diagnosis if you're lucky enough to have it. I'm so frustrated by this, I just want to fix it. No sleep makes me cranky!! ZzZzZzZz

I have Crps2 and sleeping is a huge issue. For a while it would hurt to lay down. Constantly waking up w insane pain, and then I would get worse as the day pogressed. The cycle was never stopping. After taking ldn, my pain stays more cold. So being warm at night helps. But as we all know our monster doesn't like us to be too comfortable, so when the sheet starts to hurt etc.... awake.
I also wake up a lot throughout the night because of limbs getting numb/falling asleep. So I toss and turn a lot.
Don't think this helps but this is my nightlife now.

Thank you for your reply.

I don't know if the RSD contributes to mine directly. In the beginning I know it did. Sheets hurt so bad. I don't have as much of that now, but it is not gone by any means. A lot of my dreams focus around things biting my legs or sitting in pricker patches by accident, brushing up on stinging corals while diving or even people trying to chop my legs off, so I know that there is some pain associated while I am asleep that I don't feel as much when I am awake but the sleep Doctor said this does not account for what she sees on my sleep study.

My husband tells me that I move and kick nearly constantly so it suggests RLS but our trial with narcotics says this is not the case. Somehow brain activity is involved. I wonder if our RSD contributes to lighting up certain parts of our brains or if the pain alone can do that? When I'm awake I'm really good at lying to myself and saying that pain isn't there. Maybe that gets thrown out the window when you're asleep because the unconscious takes over?

I know for sure there are other RSD/CRPS folks out there who sleep terribly just from the disease itself. How could we not sleep terribly? I also wonder what other diseases or conditions could manifest as disorders because of RSD. RSD/CRPS seem to cause so many issues outside the scope of the disease.

Also interesting about your temperature observation. I sleep much better when it is freezing and I have blankets. Maybe I'll have to set the AC really high and see if I can sleep?

Yes this is true in part for me too.......fan on high and warm blanket. But then when I get the turnic feeling I end up ripping everything off.
I dunno what else it can effect. I recently learned tics are common. Thanks bio.....this is weird cuz mine started w the medication. Or was it due. One of my bones just broke and my molars have dissoved.....have you experienced any 'weird'/other symptoms?

Theo,

I was sleeping in spurts day and night. No position was truly comfortable, but I would get exhausted enough to fall into a coma like sleep throughout the day from which I could not be awakened.

I used a folding stool to keep the covers off my feet. It also forced my feet to stay upright, because they were trapped under the stool. I know it sounds weird, but it helped with the pain.

Neurotin also helped. I was often awakened in the night by jabbing electrical pain, as if there was a thunder storm in my legs and feet. I recall lots of screaming. (I experienced this the other night for the first time in a long time and it was short, but still horrible) I have giant allover body spasms and big twitches when I am falling asleep.

Heating pads helped me calm down my legs. If my RSD leg got too cold I could not sleep and I would moan and groan. I put the heating pad next to my feet under the stool. I know taking a heating pad to bed is not recommended, but I did not know what else to do.

If my husband couldn't massage the bottoms of my feet I used an infared massager. I still do. I think it helps.

I cannot abide the sound of an air conditioner or a fan, but I know I sleep better when there is a breeze.

Like Enna I sleep warm, even in the summer.

Just thought i would chime in on this issue. I havent been able to sleep since 2009 when i was in a car accident and was injured. Then in 2010 had spine surgery and ended up with crps II. It's painful to lay down. Weird sensations in my legs, burning pains, electrical shocks, non stop. How can i have burning pain yet ice cold toes? So i have been taking sleeping medication every night for years. New doctor put me on extended release gabapanten which helps and has the added benefit of making me drowsy at night, then i take a muscle relaxer to help with muscle spasms from the searing pain. So I'm not taking the sleeping med for now. Anyway, i do get the limb twitches, arms jerks, even my abdomen will suddenly spasm .just a part of this whole crps thing i guess. I cant imagine just falling to sleep and resting like a baby.

Hi Theodora,
Sorry you're battling this monster.
My neurologist prescribed Amitriptylene for my sleep issues and it helped. Just saying...

Thanks for the responses!

I'm glad Gabapentin and Topamax work so well for you guys. I was put on Gabapentin at really high doses (9000mg/day or something stupid high) along with Topamax in high doses at the same time. It fried my brain so badly that I had to drop out of school. I couldn't think. I couldn't learn new information and I couldn't even read a page in my books without, #1 - falling asleep and #2 - having to reread over and over again and I couldn't tell you what I had just read. It was like there was a hole in my brain and my thoughts were just falling out. It took years to recover. Even after I complained extensively my Doctor kept me on it until I had a collection of Doctors who had told me that both of these meds cause the type of neurological issues that I was experiencing. I went for months on them with what I felt was no brain function. It was like I had alzheimers. I was not employed at the time due to RSD issues but I couldn't even function to cook dinner. I would forget what I was doing. Years later I think my brain is still slow, maybe 90% recovered, but I'm not the same. That's a lot of words to say, those meds will not work for me, unfortunately. So many Doctors want to give them to me but I just can't go down that path again. I felt dead inside and that's worse than RSD, at least by a little. I'm glad they work for you guys - I wouldn't take them both together or at the doses I was at as a precautionary but I do appreciate the suggestions.

I found this device: http://myrelaxis.com/ and I'm torn on it. It would work for RLS right when you fall asleep, but it shuts off. The other part is that I can't imagine vibrations on RSD legs. OUCH! But I do wonder about it interrupting nerve pain issues. The trial only costs you $50 after the rebate so it's not a huge loss if it doesn't work.

I tried turning the AC up super high last night and snuggling under a blanket. I ended up too warm anyway so I may just have to wait for cold weather for that theory. Seems like RSD is heat sensitive no matter what.

I also have no circulation. I can be under a pile of covers and a heating pad for an hour and my legs are still ice cubes if people touch them. The other interesting thing - I can't sense temperature with my arms or legs so I don't know if I'm cold or hot. I got frostbite in my toes once because of this. I had no idea they were even cold! Boiling water or touching pans in the oven do not register for me either. I usually have burns on at least one hand at any given moment. So the temperature thing makes sense for me somehow with sleep, I am almost always cold, but I hate being hot and I get hot when I'm asleep. I still think there is something there about regulating the temperature.

I tried making blanket stands to keep sheets off of my legs in the beginning but I always kicked them down, usually with quite a bit of pain. I don't cover my legs now when I sleep unless it's super cold so nothing touches them.

I love all of the ideas. I think we'll find something neurologically in the end but I know the sleep Doctor doesn't understand RSD so if the link is there, I'll have to find it. Thanks for the help so far.

What works yesterday doesn't work always.....I don't do well with those meds either. For a while too I wondered about my CRPS being quite....for me this monster was always present but not always aggressive. Waiting for anything to trigger it's ugly head.
Yes, I get super hot at night.....but for some reason as of late I can tolerate that at night only. If I get hot during the day I am uncomfortable in my skin. The ceiling fan is usually on at night too....
But for this week I ve been ice cold feet and hands. I read somewhere that cold numb hands lack of vitamin b12....dunno if true or not. And the stinging is from head to toe....especally at injury sights, face, arms and torso.....
So T keep us posted with you story, success and not so.