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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I've had RSD for 25+ years now, and seem to be collecting other medical issues. I realize this is the RSD board, but I'm really hoping some members may have gone down this road and could have insight or suggestions - or maybe just support.

I injured my R knee and woke from my first surgery in horrible pain. Needless to say, that was in 1985, and was the start of my RSD. I've added chronic migraine, Meniere's Disease (an inner ear/vertigo/hearing condition), Narcolepsy, Insomnia, and Fibromyalgia.

My current "biggist problem" is my chronic so-tired-it-hurts issue, which was labled Fibro. I had the overnight sleep lab study, which ruled out sleep apnia. Unfortunately, they found I have Narcolepsy - I never reach stage 4 (the period of delta brain waves which are when your body does it's healing). So now I have the issue being so horribly tired, pain that runs through my entire body (thus the latest guess of adding Fibro to my conditions list), and insomnia.

I was (and am) on 150mg Lyrica 2x daily, 30mg Oramorph (aka MS Contin/Morphine Sulphate) 2x daily, and 20mg Celexa 2x daily. Due to my inability to get out of bed, my doctor added 36mg Concerta 1 upon waking, and 1 at lunch. Now I can get out of bed, but even sitting on a couch is still exhusting- I seem to need the support I get for my spine by sitting in my adjustable bed. I force myself to get up and move around some, but simply going to a movie with my husband is exhausting. I don't take naps, and I usually spend at least 1 48 hour period awake per week. I've tried skipping the Concerta, but then I am even more lethargic.

Anyone else batteling RSD & Narcolepsy & Insomnia ...either Fibro or RSD full-body?

More importantly, what have you tried? What helped, or made things worse? Somehow I feel my Narcolepsy perhaps isn't being treated correctly. My neruo doc went ahead and gave me Concerta so I could try and find relief-maybe force my body's clock to reset. (The sleep center at Kaiser lost the outside lab's report, and luckily I had been sent the report summery, which I gave to my neurologist.





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