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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)

I fall asleep but can't stay asleep, ever. Any advice?

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Unread 09-21-2011, 05:10 AM   #1
Karen67
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Question I fall asleep but can't stay asleep, ever. Any advice?

Well, here I am, its 4:50am and I have been awake for 2 hours. I have tried every OTC remedy out there for sleep. The best thing I found so far is called Dreaminol (casein decapeptides, 5-HTP, L-theanine, and melatonin are the main ingredients). Problem is, after taking this for two to three weeks it stop working! My neurologist gave me klonapin to help, but all it does is help me fall asleep not stay that way. I am hoping one of you has some type of routine that you do that will do the trick for me. Hot baths are out because the temp. change sends me into a flair. I am starting to think my best bet is my doctor and some kind of hardcore sleeping pill. YIKES! This is not what I want to do. Any and all home remedies would be a great help. I will stand on my head if y'all think it will work. Ok, maybe not. Don't think I can make my body do anything like that anymore, not with RSD anyway. Help please. thank you-thank you-thank you.

Last edited by Karen67; 09-21-2011 at 07:34 AM.
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Unread 09-21-2011, 05:16 AM   #2
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Sleep issues plague a good percentage of people that have CRPS.

If the OTC sleeping pills aren't helping you, (they don't do much for me) I would consider asking your doctor for a mild "prescription" medication. I use Trazodone (Desyrel). It is pretty tame as far as meds as far as side effects go, (I had dry mouth for a while, but that waned over time) and it really helps me. It is widely prescribed for sleep. Trazodone is an oral anti-depressant, but many people take just one tablet an hour or so before bedtime. It may take a couple of weeks for it to work effectively.

With chronic pain, I have found it essential to get as much sleep as I can; we all know that it makes the next day soooooo much better on a pain scale.
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Unread 09-21-2011, 10:27 AM   #3
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Dear Karen,
Routine bedtime, a bit of carbs snack before bed, darkness, being warm, white noise and/or earphones and gentle music are a few of the things that work for me. I can't take sleeping meds because I have a history of sleep walking. Key for me is not being awakened once I get to sleep. I use music and earphones, but white noise of a fan works too, just not blowing on me. I make a plan of things to do when I do get awakened that will eventually make me drowsy again. But I do not leave the dark room or move my body as it needs the rest. But even bumping my feet together will do the waking up. Having things within reach so I don't have to move my body has worked best for me though. My feet and legs need to be up(I sleep in a recliner to keep myself from turning over and bumping my ankles together) for at least 8 hours.

It took me a long time to develop a plan that works for me, and it doesn't always work, but I've stopped panicking about it. But I don't work now so the pressure is less.

Hope this helps a bit.
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Unread 09-21-2011, 10:50 AM   #4
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There is an Rx strength melatonine option I think...

The key here, is what is waking you? Pain? Undiagnosed sleep apnea (taking pain meds can cause it)? Etc.
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Unread 09-21-2011, 10:54 AM   #5
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Originally Posted by gramE View Post
Dear Karen,
Routine bedtime, a bit of carbs snack before bed, darkness, being warm, white noise and/or earphones and gentle music are a few of the things that work for me. I can't take sleeping meds because I have a history of sleep walking. Key for me is not being awakened once I get to sleep. I use music and earphones, but white noise of a fan works too, just not blowing on me. I make a plan of things to do when I do get awakened that will eventually make me drowsy again. But I do not leave the dark room or move my body as it needs the rest. But even bumping my feet together will do the waking up. Having things within reach so I don't have to move my body has worked best for me though. My feet and legs need to be up(I sleep in a recliner to keep myself from turning over and bumping my ankles together) for at least 8 hours.

It took me a long time to develop a plan that works for me, and it doesn't always work, but I've stopped panicking about it. But I don't work now so the pressure is less.

Hope this helps a bit.
A small carb snack helping put you to sleep is a sign that you might be having blood sugar issues...
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Unread 09-21-2011, 11:03 AM   #6
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Quote:
Originally Posted by LIT LOVE View Post
There is an Rx strength melatonine option I think...

The key here, is what is waking you? Pain? Undiagnosed sleep apnea (taking pain meds can cause it)? Etc.
Hi L.L., actually, my husband snores. He has a c-pap machine but the new mask he has is too small for him. I think I need to find a way to measure his nose and mouth so he can get the correct size mask. But to be honest, foot pain is doing the majority of the damage to my sleep pattern. I have another symp. nerve block on the 30th of this month and I am going to ask my PM doc about it. Both my Mom and my Aunt take trazadone (sp?) and they both swear by it. I just feel kinda funny doing the suggesting of a medicine to my PM doctor. Not sure why, but I do. maybe for now I can try sleeping in the guest room. Karen
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Unread 09-21-2011, 11:51 AM   #7
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Quote:
Originally Posted by Karen67 View Post
Hi L.L., actually, my husband snores. He has a c-pap machine but the new mask he has is too small for him. I think I need to find a way to measure his nose and mouth so he can get the correct size mask. But to be honest, foot pain is doing the majority of the damage to my sleep pattern. I have another symp. nerve block on the 30th of this month and I am going to ask my PM doc about it. Both my Mom and my Aunt take trazadone (sp?) and they both swear by it. I just feel kinda funny doing the suggesting of a medicine to my PM doctor. Not sure why, but I do. maybe for now I can try sleeping in the guest room. Karen
Wow Karen!!!! You simply must get over feeling like you cannot suggest a medication or a treatment to a doctor. If he/she is not comfortable with your increasing knowledge, which may well include treatments/meds that are unfamiliar to him/her---RUN LIKE LIGHTNING!!!!!!! The same holds true for meds or treatments that you have determined through your own research not to be in your best interest. This is particularly true in the case of pain management doctors who many times make the lion share of their money doing procedures, which sometimes, and particularly in the case of CRPS can benefit the physician more than the patient.

If you are just not experienced in making suggestions to doctors and being a "saving consumer" when it comes to your health, there are lot of us who can help you become more comfortable!!!!

What you want to develop is the ability to be a partner with your doctor. A partnering relationship sets the tone for self advocacy, part of which is questioning, doing your homework, and at times dragging the medical profession behind you.

It sounds like you may be in an ideal situation with a doctor who treats many CRPS patients. (Although numbers can be risky since some physicians who treat CRPS are the one way docs, your are the nail and he/she is the hammer).

Getting suggestions from folks here at NT is only a start. Get busy and do your own research and go to original sources. You might start by reviewing clinical trials and journal articles. Some of the research is a little heavy and difficult to interpret if you don't have a background in evaluating research methodology, but you will learn from the process. Also, check the references at the end of the articles.

You Go Girl!!!
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Unread 09-21-2011, 12:23 PM   #8
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Well, I read somewhere, a dr suggest that eating a carb snack an hr or less before bed, will aid in the 'drowsy' factor. I don't use it all the time but when my brain is going 100 miles an hour close to bedtime I do pull it out of my tool box. 1/2 cup of cereal or a couple of small cookies and some milk. Before I had a system, I was really panicking about not sleeping, which was making it all the worse. Once I discovered it was part of the CRPS, I began approaching it more as a discipline I needed to follow.

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Unread 09-21-2011, 03:41 PM   #9
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Quote:
Originally Posted by Karen67 View Post
actually, my husband snores. He has a c-pap machine but the new mask he has is too small for him. I think I need to find a way to measure his nose and mouth so he can get the correct size mask.
My wife uses a c-pap because she snores. It's a combination of the right mask + correct pressure that keep her from snoring. That and a sharp elbow to the... (no, no... just kidding.... ) She has the type of mask that covers both nose & mouth (mine just covers nose). Surgical supply stores (or whoever supplies your c-pap stuff) should have options for him to try for style & size. If not, check online sources as well!

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Unread 09-21-2011, 05:29 PM   #10
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Karen,
I just saw my neurologist and one of things I told her was that I was being woke up a few times during the night in pain. She prescribed Nortriptyline to be taken at bedtime.
I'm going to start tonight and if this is like your problem I'll let you know it goes.
If you like?....
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