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)

Reply
 
Thread Tools Display Modes
Old 04-29-2009, 04:23 PM #1
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
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
asb
AintSoBad is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-30-2009), gardengrl (04-29-2009), loretta (04-30-2009)
Old 04-29-2009, 06:29 PM #2
DianaA's Avatar
DianaA DianaA is offline
Member
 
Join Date: Jun 2007
Posts: 329
15 yr Member
DianaA DianaA is offline
Member
DianaA's Avatar
 
Join Date: Jun 2007
Posts: 329
15 yr Member
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
DianaA is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-30-2009), dreambeliever128 (04-29-2009), gardengrl (04-29-2009), loretta (05-16-2009)
Old 04-29-2009, 07:36 PM #3
angelrsd's Avatar
angelrsd angelrsd is offline
Member
 
Join Date: Dec 2008
Location: murfreesboro tn
Posts: 500
15 yr Member
angelrsd angelrsd is offline
Member
angelrsd's Avatar
 
Join Date: Dec 2008
Location: murfreesboro tn
Posts: 500
15 yr Member
Default

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
__________________
hope this finds all in less pain
.



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




please check out our website to help bring awareness to RSD!


.
angelrsd is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-30-2009), dreambeliever128 (04-29-2009), gardengrl (04-29-2009)
Old 04-29-2009, 08:06 PM #4
Dew58's Avatar
Dew58 Dew58 is offline
Member
 
Join Date: Jul 2008
Location: Oklahoma
Posts: 498
15 yr Member
Dew58 Dew58 is offline
Member
Dew58's Avatar
 
Join Date: Jul 2008
Location: Oklahoma
Posts: 498
15 yr Member
Heart

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
__________________

.


A Positive Attitude Will Assist Me Toward An Active Life, Once Again
.

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.
Dew58 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
gardengrl (04-29-2009), loretta (04-30-2009)
Old 04-29-2009, 08:54 PM #5
dreambeliever128's Avatar
dreambeliever128 dreambeliever128 is offline
Magnate
 
Join Date: Nov 2006
Posts: 2,088
15 yr Member
dreambeliever128 dreambeliever128 is offline
Magnate
dreambeliever128's Avatar
 
Join Date: Nov 2006
Posts: 2,088
15 yr Member
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
dreambeliever128 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-30-2009), loretta (05-16-2009), SBOWLING (04-29-2009)
Old 04-29-2009, 09:52 PM #6
SBOWLING SBOWLING is offline
Member
 
Join Date: Mar 2009
Location: Ohio
Posts: 310
15 yr Member
SBOWLING SBOWLING is offline
Member
 
Join Date: Mar 2009
Location: Ohio
Posts: 310
15 yr Member
Default

I use to have a horrible time sleeping. I like most of you would go days without any sleep at all. I use to take lunesta. One morning it hadn't worn off. Me and my daughter were going to Illinois for a wedding. It was 6 a.m. we stopped for breakfast. My first warning sign should have been when I feel asleep at the table. I was driving west bound in I-70 and feel asleep my daughter was already asleep. We woke to the sound of the car going through the median. It came to rest in the fast lane of the east bound traffic. We didn't hit anyone and no one hit us. I was so shaken by what had happened and the fact that I was facing the on coming traffic. I drove back to the other side and stopped on the shoulder by the slow lane. A semi saw us coming I didn't see him until I heard his breaks and saw smoke rolling from his tires (all 18). It would have hit my daughters side of the car. I remember asking God please spare her this is my fault don't let her get hurt. We made it to the shoulder of the interstate unharmed. We started crying and drove to the next exit stopped at the first gas station to examine the car. It was covered in mudd and grass but was still driveable. We finished our trip to IL. against my husbands demands. He was working his 24 hour shift at the firehouse and wasn't with us. Sorry for the long story I don't take sleeping pills anymore.

I do take .5 mg x 2 a day or Ativan. I take one before bed and it helps me sleep. On the nights I toss and turn I sleep in the recliner. I can't toss and turn as much so I sleep a little better. I try very very hard (some days it's impossible) not to sleep during the day. If my mind is working overtime and I can't sleep. I get up write all my thoughts down on paper (sometimes this helps). When the sheets feel like they are full of glass it made it very hard to sleep. I changed to Egyptian cotton and it has made a world of difference. If the pain is too awful I just ask God for his peace of mind to cover me and more times than not he answers.
Sorry this is sooooooooooo long!!!
Take care,
Sherrie
SBOWLING is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-30-2009), loretta (04-30-2009)
Old 04-29-2009, 11:02 PM #7
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
Default

No answers are toooo long!
Please!
Keep them coming!
Then, we'll have a conversation...
Yea?

I hope so!

Pete
asb

PS Thanks, so much for the kind replies.... Now, you quiet ones!
AintSoBad is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-30-2009)
Old 04-30-2009, 01:18 AM #8
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
Default

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
loretta is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dew58 (04-30-2009)
Old 04-30-2009, 01:21 AM #9
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
Default

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
loretta is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
dreambeliever128 (04-30-2009)
Old 04-30-2009, 01:32 AM #10
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
loretta loretta is offline
Senior Member
 
Join Date: Feb 2007
Posts: 1,090
15 yr Member
Default

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
loretta is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
hEALING THE BRAIN IN REM SLEEP & DELTA SLEEP lou_lou Parkinson's Disease 0 03-08-2009 05:58 AM
pdoc wants me to see a sleep specialist about possible sleep apnea Mari Bipolar Disorder 19 09-30-2008 10:42 PM
UARS/Upper Airway Resistance Syndrome, type of sleep disorder, is not sleep apnea: concerned lady Sleep Apnea & Sleep Disorders 5 11-25-2007 03:08 AM
Do you have to have a sleep during the day?? Lucy Traumatic Brain Injury and Post Concussion Syndrome 24 11-08-2007 11:33 AM


All times are GMT -5. The time now is 04:54 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.