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 12-27-2015, 06:58 AM #1
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Default CRPS & Nightly Sleep Patterns

Do you remember when you and I used to be able to sleep at night, prior to coming down with CRPS? I can, but it has been quite a few years now, since I've slept through an entire night. And once again you guessed it; last night I didn't sleep a single wink. So, I thought that I would do a little discussion type of survey for those of us that might be interested in finding out how we compare with one another in the amount of sleep we get and our sleep patterns, as patients who suffer from CRPS. Please find listed below a variety of time frames. If you are interested, please tell us which one is the closest to describing the number of blocked hours that you get to sleep. Also, if you'd like please add your own description along with your post to tell us what sleep is like for you. Is it restful, beneficial, do you still feel worn out, etc? That way, we can all respond and compare what is going on with us as individuals or as a group. Here goes:

A. I get the same amount of rest now as I did prior to coming down with CRPS.
I consistently get 7, 8 ,9, or more hours of sleep every night.

B. My sleep patterns have altered some due to CRPS. I'm now getting about 6 hours of sleep every night.

C. My sleep patterns have altered considerably due to CRPS. I'm now getting 4 to 5 hours a night.

D. My sleep patterns have altered a great deal due to CRPS. I'm now getting 4 hours or less of sleep a night.

E. My nightly sleep patterns have been completely erased due to CRPS. I never get any sleep at night. My sleep consists of falling asleep on and off through out the day.

As for me, I used to love night time. But not anymore. I dread the night. For some reason, my pain is better in the morning and much worse after sun down. And I used to be spot on with the amount of sleep I would get per night. I was always right around 7 hours and felt very refreshed, and I never took naps through the day. Now I'm a combination of a couple of the above categories--namely D & E. I get a maximum of about 3 hours of sleep per night, if I am lucky. And when that doesn't happen, I doze on and off through out the course of the day, when either my pain levels go down or when the pain simply gets so bad that I simply fall asleep, because my brain can't handle the pain any longer. When I sleep because the pain gets so bad, I don't wake up feeling very rested though. I feel more like I got hit by a bus, and I drag through the rest of the day. So, when I add all of the total numbers of hours I sleep together, I'd say on average I'm getting about 3 hours of sleep per night and between 3 1/2 to 5 hours of total sleep per night & day combined.


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Old 12-27-2015, 09:26 AM #2
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My sleep became severely erratic due to pain. There was no comfortable position to rest in, I had to keep the covers elevated above my feet. I needed a heating pad positioned just right to keep my feet warm. When I finally fell asleep I groaned constantly.

Neurotin eliminated the electric shocks that would jolt me awake, so I sleep better and deeper now, but I still find it difficult to get into a good position.

Yesterday I went to an extravagant movie theatre with amazing seats which did not leave me to pay for it in torturous pain for hours afterward. I was thrilled, but it made me think is it possible that our beds and chairs are contributing to our agony.

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Old 12-27-2015, 10:30 AM #3
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Old 12-27-2015, 07:41 PM #4
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When my RSD spread and got much worse a few years ago I went to group E...got almost no sleep...never more than 15-30 minutes at a stretch and basically fell asleep due to pure exhaustion after several days of no sleep. Then the dr put me on amitriptyline and I went to group D...getting a solid stretch of 3 hours each night which isn't much but compared to the hellish several months prior I felt a lot better. Then I did tDCS treatments and I was able to get off the amitriptyline and was getting 6 hours a night consistently...occasionally more with just occasional bad nights during flare ups.

In October I fell off the top of a 10ft ladder at work and tore my rotator cuff...Right before thanksgiving I started physical therapy which made the shoulder much worse. Now...for the past month...I've been back to group E and it SUCKS. Can't sleep at all with this new pain even with the pain meds. They gave me flexoril for a couple weeks in the beginning to help me sleep but once I ran out of that I've been in hell with my sleep patterns. Insomnia is now my constant companion again and it's taking a hell of a toll on me where my pain levels are concerned. My RSD has been flaring more often and I've been house bound for a month now. Using the Quell device helps a little but I can't do many of my other pain management things at home due to those same things hurting the shoulder. We all deal with so much pain and I am used to that...but this shoulder pain on TOP of everything else has thrown me into a tail spin. Hoping it gets better soon because I will tell you that sleep makes a HUGE difference in my ability to cope with the RSD day in and day out...it's essential and not getting it right now is a killer...
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Old 12-27-2015, 08:15 PM #5
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Quote:
Originally Posted by catra121 View Post
When my RSD spread and got much worse a few years ago I went to group E...got almost no sleep...never more than 15-30 minutes at a stretch and basically fell asleep due to pure exhaustion after several days of no sleep. Then the dr put me on amitriptyline and I went to group D...getting a solid stretch of 3 hours each night which isn't much but compared to the hellish several months prior I felt a lot better. Then I did tDCS treatments and I was able to get off the amitriptyline and was getting 6 hours a night consistently...occasionally more with just occasional bad nights during flare ups.

In October I fell off the top of a 10ft ladder at work and tore my rotator cuff...Right before thanksgiving I started physical therapy which made the shoulder much worse. Now...for the past month...I've been back to group E and it SUCKS. Can't sleep at all with this new pain even with the pain meds. They gave me flexoril for a couple weeks in the beginning to help me sleep but once I ran out of that I've been in hell with my sleep patterns. Insomnia is now my constant companion again and it's taking a hell of a toll on me where my pain levels are concerned. My RSD has been flaring more often and I've been house bound for a month now. Using the Quell device helps a little but I can't do many of my other pain management things at home due to those same things hurting the shoulder. We all deal with so much pain and I am used to that...but this shoulder pain on TOP of everything else has thrown me into a tail spin. Hoping it gets better soon because I will tell you that sleep makes a HUGE difference in my ability to cope with the RSD day in and day out...it's essential and not getting it right now is a killer...

Oh my goodness. WOW. To me, your situation is an example as to what makes CRPS such a Monster. With this disease we can be doing so well, and yet be set back so very quickly. You made such great strides along the way only to be set back by one major accident off of a ladder, which others would suffer from too, but would also recover more quickly from after the initial fall. But as for you, your CRPS ramps up along with the added pain from the fall, and tosses your sleep patterns back in the tank. How very frustrating!!!! CRPS really is a MONSTER! errrrr

You, my friend.. are definitely in my prayers. Thank you for sharing your situation. WOW
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Old 12-28-2015, 07:16 PM #6
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Thanks. I guess the worst to me is that even for those of us doing "well"...it's such an incredibly delicate balance. It doesn't take much to completely throw you off and set you back...a stray breeze...someone bumping you or stepping on your foot...road construction outside your house...someone driving by with the bass way up on their stereo. So many things we can't control that wreak havoc on our lives.

I'm very lucky I wasn't hurt much worse in my fall...I try to keep that in mind. I've had some really rotten luck this year in that I've had a bunch of accidents and medical issues...but on the flip side each and every one of them could have been so much worse and I am lucky for that. This will pass and eventually I have faith that things will even out again with the RSD and the sleep. But this really brings home to me the importance of getting sleep to manage the pain because it is darn near impossible to manage without rest...
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Old 12-28-2015, 09:14 PM #7
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I feel for you!

I have not slept in 2 days and I don't know when I will fall a sleep.

I need stronger meds for pain and for breakthrough pain but my doc can't see me till another week. So what if I don't sleep between now and then. I could have a car accident and I have to work to support my family or I may as well be dead.
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Old 12-28-2015, 10:34 PM #8
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Quote:
Originally Posted by guitarguy View Post
I feel for you!

I have not slept in 2 days and I don't know when I will fall a sleep.

I need stronger meds for pain and for breakthrough pain but my doc can't see me till another week. So what if I don't sleep between now and then. I could have a car accident and I have to work to support my family or I may as well be dead.
Hugs...sorry you have to go through this...hopefully the week goes by quickly and then you are able to get something that will help with the pain and allow you to sleep.
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Old 12-29-2015, 01:57 AM #9
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Quote:
Originally Posted by guitarguy View Post
I feel for you!

I have not slept in 2 days and I don't know when I will fall a sleep.

I need stronger meds for pain and for breakthrough pain but my doc can't see me till another week. So what if I don't sleep between now and then. I could have a car accident and I have to work to support my family or I may as well be dead.
Sir,

Have you tried to speak to your doctor's nurse? If she could pass on the information that you just shared with us, your doctor may want to either see you earlier or get you the necessary meds to tie you over until your appointment. I hope that you and your family had an enjoyable Christmas, despite the obvious horrific pain you are experiencing.
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