3 replies to this topic

[Janet P]

Hi, I'm new here, was diagnosed with Narcolepsy about 11 months ago after nighttime and daytime sleep studies. My main symptoms were hypersomnlence, EDS, and sleep paralysis.

I was able to get back to work after a brief period on disability, mostly stress exhaustion, when the neurologist prescirbed Provigil for day and zolpidem for night. I hadn't been feeling much better and was about to give up on myself, when a call to suicide hotline led me to check out some other troubling symptoms. This was about three months ago...
A rhumatologist diagnosed me with fibromyalgia and added Lyrica to my regime. Then, 2 months ago a neurologist found problems with my cervical spine effecting my hands and I had two epidurals in the neck, with some kind of steriods. To top it off I have been unsuccessful on two different antidepressants.

I feel like I'm a jumble of problems and, at 46, just want to curl up in a corner and sleep forever. I've been a member of the Narcolepsy Network for a long time, but never felt like reaching out before.

Can someone tell me if it is normal to have Narcolepsy AND fibromyalgia, and if so has anyone has anyone with both been able to lead a productive, maybe painfree life? I just don't know what to do next.

Thank you,
Janet

[stmartingal]

Hi Janet,

I'm also new here and haven't even gone to a sleep study yet. I am actually a Lyme disease patient with lots of sleeping problems. I have never slept well since I was a child (and I'm a little older than you now). I never wake up feeling like I have had a good night's sleep. After my Lyme disease symptoms appeared almost 3 years ago my sleep problems got even worse. I was only sleeping 2-3 hours a night after taking sleeping medication. I now manage to get about 4-5 "decent" hours of sleep a night (if you can call it that), but then wake frequently and have a lot of bizarre dreams. I wanted to reply to you to ask if you have been evaluated for Lyme disease. Many patients who are diagnosed with fibromyalgia actually have Lyme disease. Lyme tests at the regular labs like Quest and LabCorp are generally not reliable and most Lyme-knowledgeable doctors use other specialty labs.

I have been told that some of my sleep issues sound like narcolepsy so I am going to schedule a sleep study. (My Lyme doctor is sending the prescription.) I attended a Lyme disease conference a few weeks ago and met a doctor who is on the board of this web site. He works with many fibromyalgia patients and has had a lot of success in helping them sleep. I'd be happy to give you more information if you would like me to.

[Narcolepsy Network]

Hi Janet:

Others DO share your dual diagnosis of narcolepsy and fibromyalgia. While I'm not one, I do know several people who have found a good deal of relief from both the pain of FMS and narcolepsy symptoms with Xyrem. You'd do best to seek out a sleep-certified physician experienced in treating patients with this dual diagnosis because success does seem to depend very much on different titration and dosing protocols.

Best wishes in finding effective treatment!
Sharon

[Janet P]

Thank you, Sharon! That's very interesting. I will ask my sleep specialist (neurologist) about that because my rhumatologist and he don't communicate as far as I know. Is Xyrem similar to Lyrica or might they be taken simultaneously? Thank you for your time and help!
Janet