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