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 04-29-2009, 04:23 PM #1
AintSoBad AintSoBad is offline
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Default Sleep/RSD

Are there any here who Don't have sleep issues?

I use a CPap machine, sometimes I attach an O2 concentrator. (Well, I have a TBI also, so the thought is, the O2 helps the pain and healing of the brain).
Need meds to sleep.
Something to wake.

Anyone ever take Provigal? I find it to be the Devil's own drug.
(I do take aricept and the like, which are for altzheimer's), it's great for the TBI, but Provigal is just speed to me, and really cranks up the pain.

Of course, the CPAP makes me feel like I"m in an alien movie with a "face hugger" stuck on me. But, It REALLY helps me with alertness the next day! And generally feeling rested.
I've used cervical pillows, and etc...

Who has sleep woes, and what do you do for them?

Pete
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Old 04-29-2009, 06:29 PM #2
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Default Sleep?????

Pete,

Sleep! What is that? I have no idea, what that is? I am burning up the computer all the night. Sleeping and laying in bed can be so brutal. I just make the best of it. Sleeping meds make me feel so bad in the morning, but I do use them at times. I am prescibed Seroquel for sleep and it works.
Di
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Old 04-29-2009, 07:36 PM #3
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im like diana i have no idea what sleep is.. i forget what that is like LOL i also have CFS so when i do sleep i might as well not have..
i have 4 pillows under head.i take lunesta for sleep and zanaflex at night to help stay asleep with the lunesta .. when it works its great but that is not very offten.. i tried to take the 50mg a night of that nortriptylne and was unconscience for 13 hrs so that isnt gonna work for me LOL so i take 25mgs at night .. i have had sleep issues since rsd.. i used to be the one that could sleep early then sleep all day.. i wish i was still like that

carrie
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rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,,




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Old 04-29-2009, 08:06 PM #4
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I had not slept more than 3-4 hrs in a row since 2007. As of last night, I slept 8 hours in a row, and I owe it to my new pain med Opana ER. Amazing..one dose..and out I went. Heck, last week I had appx. 9=10 hrs sleep..in a 7 day period!!!

I have Ambien CR; however, it does not work for me.

I felt so good this morning once I woke up..I left the house and had hair and nails done at the Salon. Hubby was shocked when I ask him to drive me..he was grinning ear to ear when he drove me..and then when he picked me up
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.

Last edited by Dew58; 04-30-2009 at 09:33 AM.
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Old 04-29-2009, 08:54 PM #5
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Default Hi,

I was like Carrie, I use to take 3 hour naps in the daytime and then sleep for 12 hours at night. Now I don't sleep at all. I try. I can't sit up at the computer enough to stay on all night. I lay in bed and toss and turn all night. I have cronic fatigue syndrome so I have trouble sitting up a lot.

I tried ambien and other things to use to sleep but nothing worked.

I also have a cpep machine but I cannot get use to the tube in my nose. If I'm going to die, it might as well be in my sleep, I won't know it. LOL Sick joke, I know.

I get frustrated because I can't sleep. I have pillows all round me too but I can't get comfortable.

Ada
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Old 04-30-2009, 01:21 AM #6
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Hi Ada, Have you tried the little blow up pillows for your neck people use on airplanes. I put mine in a pillow case and blow it up about 1/2 way and it really helps my neck, which the RSD has gotten into from ruptured disk. Hope it helps, if you try it. Your friend, Loretta
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Old 04-30-2009, 01:18 AM #7
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Hi Dew, so glad to hear you and OpanaER are doing well together. Wow, 8 hrs sleep, I'm so happy for you! big grin. Ambien CR is worthless to me. I never get to sleep until about 4-5 in the morning and then sleep till 10-12. Vicodin really isn't working anymore. I really want to get out of bed and live better quality of life. Will see how my tests come out. A friend just found out she has bad liver, she's been on drugs for extreme pain for 20 years. Is on Morphine and Oxy. The best neurological institute here, Barrows just told her a pain pump won't work for her.
My Dr. represents Serequel Pharmeceutical Co. and we talked about me trying it for sleep. Maybe I'll try it. I'm getting my hair done Friday no matter what!. Have a great evening. Loretta
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Old 04-30-2009, 10:43 AM #8
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Quote:
Originally Posted by Dew58 View Post
I had not slept more than 3-4 hrs in a row since 2007. As of last night, I slept 8 hours in a row, and I owe it to my new pain med Opana ER. Amazing..one dose..and out I went. Heck, last week I had appx. 9=10 hrs sleep..in a 7 day period!!!

I have Ambien CR; however, it does not work for me.

I felt so good this morning once I woke up..I left the house and had hair and nails done at the Salon. Hubby was shocked when I ask him to drive me..he was grinning ear to ear when he drove me..and then when he picked me up
Dew, I think Loretta created a positive post about Opana. I did show my wife that post and she said she may run it by her PD. The wife, half the time, falls asleep sitting up because of the pain, maybe Opana will help. Keep us posted on the benefits and pitfalls of Opana. Thanks
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Old 04-30-2009, 01:32 AM #9
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Hi Diana,
Sorry yo haven't heard from me in a while, I'm just getting back to the land of the living. My laptop has been down, which I use in bed and I have to come upstairs to my husbands office to get on the computer. We are getting a new laptop this weekend. I liked your thoughts on the HBOT, No, I haven't used ityet. The clinic is going to open real soon, then I will. There were good thoughts about it at the RSDSA annual conference I went to a month ago. I met a lady that has one in her house like yourself, and she is off her meds. I got her number and will talk to her more about it. The conference will be available on DVD soon they said. There were about 135 of us there and the next day, was DRS. day. They said 50,000 new people get RSD every year in the US. I may ask my Dr. for Seraquel, he is actually doing a study for the Phar. Co. on this drug. He is into research and teaching. A man at the conference asked me to ask My Dr. if he would see him and my Dr. said he is just too busy.I know the 2 new clinics and schooling for the HBOT is keeping him extra busy. Hope all is well with you. Take care, Loretta
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Old 04-30-2009, 09:08 AM #10
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I used to crave sleep but only be able to sleep 1 night every 2 days. It was horrible! Now I sleep every night in bursts of about 3 hours. I usually go to bed between 10 & 12 PM, sometimes at 8 PM, even 6 PM. I wake up every 2 to 3 hours, usually the first 2/3. It's not set in stone, I can wake up anytime, actually. If I'm lucky I'll sleep 4 hours but usually I am awake for the rest of the night until it gets to be 5/6 AM, then I finally sort of crash and sleep for a longer amount of time, until noon and most times lately even beyond noon. It's like I'm in a different time zone. It's very hard to wake me when I crash. I have tried getting up in the middle of the night, avoiding the crash sleeping that I do, but it upsets the whole balance because I'll start falling asleep at noon if I do. I do tend to fall asleep during the day too no matter what. I have gotten very tired in the last couple of years or so, I don't know where it comes from. Maybe it's the lack of a good sleeping pattern.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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