Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 10-29-2012, 02:05 AM #1
CWilhite CWilhite is offline
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Confused How do you sleep?!?

Hi guys,
Does anyone have any tips on how to get some sleep dealing with this disease?! It's been two years and I hardly get any sleep at all. My legs feel like they are being pressed against a heater, and the pain..during the day my meds seem to keep my pain, handled I guess you could say but at night it feels like everything gets amplified. I'm on day two of what usually is a four day cycle of no sleep, I'd really love any suggestions or remedies you use to get a few restful hours at night.
Thanks!
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Old 10-29-2012, 07:14 AM #2
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I don't like to take any unnecessary medications but sleep is absolutely essential to handle any type of chronic pain.

So I use trazodone (desyrel). It WORKS. It isn't a magic pill, but it certainly has helped with my sleep patterns. And the side effects profile is pretty darn low which means that most people tolerate it okay.

Good luck to you!

Last edited by birchlake; 10-29-2012 at 04:51 PM.
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Old 10-29-2012, 04:12 PM #3
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Thanks for the suggestion, I will certainly ask my doctor about it. I've used other medications in order to help me sleep but I haven't found one yet that actually seems to work.
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Old 10-29-2012, 04:27 PM #4
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After my RSD spread last year and I got much worse...I went a whole year with anywhere from zero to at most 3 hours of sleep a night and none of it was more than 30 minutes at a time. I was such a mess.

When the doctor put me on amitriptyline I started to get 3 hours of sleep a night regularly and that was usually consecutive...seems like a real blessing. In Feb of this year I started treating with tDCS and after about two months I started getting more and more regular sleep. It has only gotten better. I am off the amitriptyline and generally get 6-8 hours of consecutive sleep a night now (unless I need to get up early for work). I cannot tell you how wonderful it is to be on a fairly regular sleep schedule after a year of basically no sleep.
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Old 10-29-2012, 08:04 PM #5
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I take Tizanidine HCl every night and I'm asleep within thirty minutes. I've tried to go without it but I wake up with muscle cramps.
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Old 10-29-2012, 10:13 PM #6
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Melatonin, soma, ultram and a prayer.
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"Thanks for this!" says:
reluctant@thetable (10-29-2012)
Old 10-30-2012, 02:16 AM #7
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Now my solution is not perfect, but when the weather is cooler/cold I tend to sleep better during the warmest time of the day (typically 2 pm - 6 or 7 pm). So I tend to get off schedule, and nap in the afternoons, but what can you do? I sleep better during the day when it's warmer, than at night. So my solution is black out shades for the day and satellite/cable tv for the night. (Or Netflix.)
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Old 10-30-2012, 06:06 AM #8
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That sounds like what I have going on. It's COLD now and I'm finding it impossible to sleep! I think I will bring up a change of meds to my doc and see what can be accomplished. I would love even a few hours each night, I would feel much less like I'm going crazy..
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Old 10-30-2012, 10:09 AM #9
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Nothing has helped me. Trazadone had to many side effects. I use baclofen, which helps the electric shocks and muscle spasms. I can take from 30-50 mg at night, but it does not help sleep much.

I am lucky to get three hours sleep a day.

After more than ten years, I have adjusted to it.

My 88 year-old Mom lives with me, so I am limited in what I can do at night without waking her. I have a DVR and watch TV, try to read, play online.

You do get used to it given time.

Hoping you find some relief.
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Old 10-30-2012, 10:55 AM #10
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I used Baclofen for a short time, do your muscle spasms seem to be worse at night or when you're trying to rest? It seems like when I'm just starting to relax in the last several weeks my legs start to spasm a lot. It's just very frustrating that these new symptoms are surfacing. Ugh.
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