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 02-05-2010, 04:14 PM #11
hannah1234 hannah1234 is offline
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yeah i havent taken tylonel in a months.. i tried it for a month, and it was too much. I think i have to do that to myself, get up early everyday. Its the dragging my feet out of bed... I need to make myself a more routine... the problem is I was getting up early all my life 5 am since i literally have been born and rsd came and it left me. I sometimes wont fall asleep till 3am, and then getting up at 6 was impossible because I would just be grouchy all day. Thanks for your responses... I am going to ask my doc if i can maybe try a muscle relaxer at night before bed so my body at least will relax!! Thank you for your responses. I am just so exhausted i cant function. its like im tired of being tired...
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Old 02-05-2010, 07:29 PM #12
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Good luck...that's a horrible feeling ...try to work slowly towards an early morning wake-up routine if you can. I know the Skelaxin is what made a big difference for me - I can sleep a straight 5-6 hours with it before the pain wakes me. That's big!! Sandy
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Old 02-05-2010, 08:22 PM #13
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Wow...I have been having sleep problems since this started. I normally get 2-4 hours of sleep a night. Every once in a while I will just crash and be out for a whopping 6 hours. I am sorry that you are going through this trouble too. I usually fall asleep around 3ish...after the first infomercials start...lol! I tried some Sudaffed nighttime while I was sick and have tried tylenol pm with no success. It seems the best thing for me is when I push really hard with my PT exercises at home and get myself tired out. Then at least I usually sleep all though my 2-4 hours without waking up constantly. I was so happy when I slept 6 hours the other day. They were not consecutive and I was awake for 2 hours in the middle...but I DREAMED. I can't remember the last time that happened. I used to dream all the time before my accident that caused the RSD and I always remembered my dreams. Anyway...I look forward to reading more ideas that people have because I have the same problem.
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Old 02-05-2010, 08:48 PM #14
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Your not alone in this department at all. Many patients who have crps (rsds) do develope sleeping disorders do to the fact that the inflammatory system and the sympathetic nervous system is all fried up. I have had this demon for a little over 14 yrs. now and have not had a decent night sleep. what I consider decent is anything over 5 hours. I usually fall asleep at no certain time of the day or night. I tried the "Get on schedule" routine but. it was all in vain. Funny how the doctors tell you to get into a schedule and stick to it when they themselves don't wear our shoes. ever meet a doctor who suffers from CRPS? AS for me, I was prescribed Trazadone @ 100 mg. I take 2 around 1 hour before I want to pass out. It helps to a degree as far as helping to calm the system. reduce the level of pain and allow my body to just calm down. It is not a miracle by no means but, it works to some degree. I have been on several different types of sleep aid over the years and this has been the one that wirks the best. I still only get 3 to 4 hours of rest but still times of a tender sleep and not a deep one. This medication is actually designed for seizures but helps in the aid of sleep. Try talking to your doctor about it. I also attempt to take naps during the day when possible. Usually the pain level determines how much and when i sleep. But some is better then none. Good luck and hope my reply helped you. Keep safe and have a pain free day/night...mellowguy
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Old 02-06-2010, 12:20 AM #15
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I have a lot of trouble with sleep and have to keep a routine to even have a chance for a good night's sleep. I quit all caffeine 6 hours beforehand and then try to wind down the last couple hours. Food stops about 4 hours beforehand and liquids about three hours.

I go through all the preps like brushing teeth and setting the alarm starting about half an hour before and taking the medication that makes sleep possible. This is especially the tizanidine (6 mg) but also seroquel. I have to stop the other medications by four and a half hours earlier or they'll interfere. I also take everything that makes me groggy or doesn't bother me at night but that's just norvasc now.

This seems to work much of the time but some nights I'll use aspirin if I'm fidgety, valium if anxious, tylenol 3 if pained. If the pain is persistrent then it's tramadol ER and if it's sudden flare then tramadol APAP. Some of these can't be mixed though.

I've tried everything and these seem to almost always work. Sometimes I'm just still wound up and then I don't take anything and just wait it out. I try very hard to get up at the same time every day even if I got to sleep late.
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Old 02-06-2010, 04:28 AM #16
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THANK YOU everyone for your replies... it is something that nobody mentions to us and it rarely is talked about. Helps to know I am not alone... I love hearing about how everyone gets themselves ready. I try to read a book, and listen to some wordless mind music to calm my brain down from the day, but the past week have been horrible and I cant sleep-- So i just give up and end up replying to everyones posts!!!! Hope all slept well, and thanks again. I truly appreciate it and any others who recommend any medicines I can bring up to my doc this week would be awesome. Thanks.
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Old 02-06-2010, 04:45 AM #17
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Sorry to hear so many others a aflicted with the same beast that I have been tortured with for the past 11 years I have just learned to live with it and it also help's that I have a very understanding wife(spouse) that tries to run interference for me when I have had a real bad Night Sometimes week or more but I do really apriciate the times when I get more than 4 hours sleep a night all I can tell you is just try to relax the best you can and do not eat or exercise before going to bed as that will usually add the time it takes to get to sleep

Best regards

Mark

Sleepless in WI
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Old 02-06-2010, 09:32 AM #18
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Hey Hannah,

Before Lindsay was diagnosed with RSD, she had sleep problems for three years. She went through a sleep study and they diagnosed her with sleep delay disorder. They say it is the same as a person who works a night shift. During the sleep study she woke up on average of 17 times per hour, they said it was pain related. Imagine that! I will find the web page that they gave me to help to turn her sleep around. You have to follow, it is called sleep hygiene, many of the posts have bits and pieces of the sleep hygiene. So if you follow it, you may be able to get some sleep. It takes at least a week or two to get on track.

Are you getting any sun during the day? Natural melatonin? I know that you should sit in the sun for at least 30 minutes per day. If you can't get sun, they have sun lamps. There was also a part where you should eat your meals on certain sides of the house. Like breakfast on the east side, etc... I will find more info for you. It has been a couple of years. It did work when she followed it. But, unfortunately as everyone on this board knows, sleep issues are part of this awful disease. Now she just passes out from not being able to sleep for sometimes two days at a time. If any one else would like this info, I will post it as a new thread in the next few days, and I will pm it to you Hannah...Didn't you just go through Ketamine infusions, that should have helped some. I am sorry that you have to go through this so young. xoxoxo
Sandy Here is the web site try it for a while make it work for you...Let me know how this goes

http://www.sleepdisorderchannel.com/...reatment.shtml



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Originally Posted by hannah1234 View Post
does anyone have problems sleeping??? I can't fall asleep until 3ish in the morning and then, i toss and turn all night long and then I dont wake up until like noon the next day. I can't keep going on like this because I need to be up in the morning. I have tried baths, meditating, reading, sleep tapes, I take remeron for sleeping- but when i take it i sleep for 14 hours. And that is WAYYY too long I wake up feeling worse than if i didnt sleep at all. my family around me just gets frustrated with me because at night i could fall asleep about 6pm or 3am... I cant fall asleep any time in the middle. When i go to sleep at 6pm i wake up at like 3am... and then that is just too early to be up. I see my doc this week and have been suffering this problem for about 9 months, and dont know what to do from here.... any help would be nice

Last edited by SandyS; 02-06-2010 at 09:38 AM. Reason: added
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Old 02-06-2010, 01:38 PM #19
ALASKA MIKE ALASKA MIKE is offline
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Norepinephrine is destroyed by COMT(catecholamine-O-methyl transferase). However, patients with chronic pain do not have adequate COMT. the only other substance within the body which is known to destroy Norepinephrine is melatonin. The problem is that melatonin is produced by the pineal gland in the presence of adequate VIP and cAMP(cyclic adenosine monophosphate), which are produced by nerves. Since these nerves are not receiving adequate oxygen, the VIP and cAMP are not being produced in adequate amounts to create the melatonin to destroy Norepinephrine. In addition, melatonin is produced after 4 PM due to the body's circadian rhythm. At approximately 4 PM, the body's blood cortisol level, blood beta-endorphin level, and blood pressure decrease. At approximate 4 AM, these levels increase. This helps explaine why chronic pain patients have insomnia and increased pain in the evening and are able to sleep better during the daytime.

Have you tried a sleep study?

experimenting, sounds like you need to find something that puts you to sleep and something to keep you in deep sleep.

I have tried all the sleep meds and they dont help me much but give me a huge hangover effect. amytrptoline has been around for years and is very cheap and is the only med that doesnt give me such a hangover,plus it is used for treating depression, pain, all sorts of stuff.

dont drink caffine after 4pm.

what is your vitamin d count? try get it above 50. you take a hydroxy25 test in your next bloodwork. try 50,000units twice a week for a few months. d2 or d3, it doesnt matter.

horrormones???your illness or your meds can affect this so make sure your testosterone and estogen are normal.

most narcotics and muscle relaxants can put you to sleep but wont keep you in deep sleep. sometimes they work for me but most of the time they dont.

when i did a sleep study i could not get to sleep so they ask me to take something that would keep me in a sleep. i took a norco10/325,ativan2mg,valium10mg,zanaflex4mg tab,dilaudid 4mg.(luckly, i no longer have to take this concocsion for sleep) this knocked me out but only put me into stage 2 the whole time. you need stage 4 to get to rem sleep which is also called dream sleep.

sometimes a glass of milk-cold is fine, works...

if you dont mind getting fat you could eat a giant carb meal. this will knock you out but wont keep you out. plus if you make it a routine you need to buy new clothes.....
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Hoping you feel better,

ALASKA MIKE
ARACHNOIDITIS,CRPStype2/CAUSALGIA since 2004
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Old 02-06-2010, 05:25 PM #20
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Hannah, I think the majority of us have problems with sleeping. I do take most of my meds at night but someone here once posted that Hemi sync makes a CD to help. I got " sleeping through the rain" for people with pain to help sleep. I ordered it and- it was funny- my husband told me he hasnt slept like that in a long time. It does help me. I couldn't believe it. I also use the epsom salt in a foot bath or a bath before bed to relax me. If I wake i am able to get back to sleep much easier. So maybe it is a combination of all of the above. Sleep well. momof4
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