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    Old 08-04-2005, 10:12 AM   #1
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    Budko HB User
    RSD and Insomnia

    I was looking through some posts and found that some of you can't sleep.

    Ok, so here is my deal, I would like for you all to let me know your experience with sleep.

    I get very tired, but can't sleep. At, night no matter what I do, unless I take a Tamazepam, I CAN'T SLEEP. I stay up watching TV allllllllllllllllllllll night. The funny thing is that I never break down due to lack of sleep. I just keep going. I have explained it to Docs as being on Auto Pilot.

    During the day, I am tired but can't lay down, I just wander around the house, finding little things to do, but not really being productive. Sound familiar?

    So, the SNS plays a big part on your sleeping habits? I get jittery and shake like I have drank 6 cups of Starbucks Coffee.

    Do any of you know how to take care of yourselves? or does your Doc help you get through it?

    Alright, who took the RSD Manuel off the face of the Earth?

    I think that if I can't get to a point where I can say Don't do this and don't do that, but so far all I got is "NO ICE, NO COLD, NO HEAT", I would feel more in control (Ok, if you have'nt seen it yet, YES, I am a control freak!)

    Much Love and Wishing you a ZERO,

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    Old 08-04-2005, 01:04 PM   #2
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    Jewel2 HB User
    Re: RSD and Insomnia

    Hey Kim,
    During my first 6 months or so of RSD (maybe longer) I would pull all-nighters all of the time. Like you, I would not even be tired the next day. It was really weird. I used nortriptylene for a while to help me get to sleep and reduce the burning pain, but I hated the way it messed with my head and I stopped.

    HOWEVER, now I am chronically fatigued. This has been going on for a year. There was a transition period where I had a hard time falling asleep even though I was exhaused - Tylenol PM took care of that. But now I easily fall asleep and sleep well. Even with a good night's sleep I usually have to take a nap during the day, or at least lie down for a while. And even if I nap, I am a zombie a lot of the day and I say (or write) dumb things, can't recall words and cry easily. I am exhausted.

    My doc is as frustrated as I am about my fatigue and has stopped just short of saying I have Chronic Fatigue Syndrome as he does not want me to get labeled with that. He just prescribe Provigil to combat the fatigue. I should start that in the next few days.

    Sorry to digress! Yes, RSD definitely messes with sleep. The sympathetic nervous system supplies signals to the Limbic part of the brain, which controls sleep, judgment, emotions, etc. It has affected me differently at different times. I really despise this part of RSD most. I've learned to live with my atrophied hand and the pain and burning, but I hate that my personality has been so altered. I don't feel like 'me' anymore.

    Whoa - really digressing today. A bit introspective. Hubby's gone for 5 days and I don't have anybody else to focus on right now. I need to have the grandkids over!

    Wish I could give you suggestions to help you fall asleep, but nothing really helped me (except the norTRIPtylene, but not good otherwise).

    Best wishes,

    Last edited by Jewel2; 08-04-2005 at 01:07 PM. Reason: Just read paragraph 2 & you'll know why! LOL

    Old 08-04-2005, 01:31 PM   #3
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    Re: RSD and Insomnia

    Ok, so here is my deal, I would like for you all to let me know your experience with sleep.

    Budko, here goes.. Wait.

    I must say that for me, there is no "rhym or reason" and/or I cannot predict my sleep/non-sleep cycles. Okay, I'll take a shot...

    I did not sleep at all last night. Not one wink. The pain was too extreme. This happens only about once every 10 days. I take Remeron to help me sleep. It is a rather strange drug. Sometimes, it works. Sometimes, I sleep poorly. For me, chronic insomnia sometimes just becomes a cycle. (How can I explain it?) Chronic insomnia leads to fatigue, and fatigue makes the pain worse.

    I am an avid reader, but many nights that I am up I simply cannot concentrate on the book. This frustrates me. Late-night TV is one long commercial.

    It is ULTRA frustrating to go to bed and realize that my beloved bride has fallen asleep in 1 minute while I toss and turn and toss and turn and…

    But I am glad she doesn’t have The Plague (RSDS), so I’m glad she can sleep.

    That’s my experience right now, but it changes (rather, in the past, it was different). It makes me angry...

    Old 08-04-2005, 03:10 PM   #4
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    Re: RSD and Insomnia

    Most nights I don't go to sleep until very late. When I do sleep, it's very broken. I wake up off and on the time I'm in bed. I have bad night sweats and that makes it worse.
    I take Tylenol PM to help make me tired. Some nights it helps a little other nights it doesn't do anything at all!! I still have some Ambien hanging around that I take for the super painful nights. It will help me sleep a bit but the pain always breaks through when it's that bad anyway.
    I end up feeling so tired some days but can't lay down and go to sleep though which really sucks. That wandering in a daze thing......hate that!


    Old 08-04-2005, 07:14 PM   #5
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    Re: RSD and Insomnia

    Oh, yeah, can definitely relate to this!!! My entire life before I got RSD I used to sleep like I was dead for at least 8 and often 10 hrs. per night. When my husband and I first got together, it just unnerved him - he kept thinking I was dead and would wake me up to make sure. Always said if the Soviets nuked our local SAC air base at night, I wouldn’t even know until I woke at my regular time the next morn. Now I am lucky if I can get to sleep before 2 am and extremely lucky if I can sleep an hour at a time before waking up whimpering because I am laying on something wrong, the foot is cramping or one of those lightning bolt pains hits. The lack of restful sleep is really getting to me. Starting to feel again like I did when in college carrying 20 credits and working 3rd shift at a truckstop - like a zombie. The lack of sleep can make you really weird and retard healing. At this point, I would give nearly anything for just one night of uninterrupted sleep! Bet I would feel at least 1,000% better if I could.


    Old 08-04-2005, 10:25 PM   #6
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    Re: RSD and Insomnia

    My husband (who has RSD in both feet, and now his right knee) also has trouble falling asleep because of the pain. (Once he falls asleep, he can sleep for 12 hours, though, and has trouble waking up.) The doctor gave him Zanaflex, and that usually works within 30 minutes. It is actually a muscle relaxant, but it takes away the pain and puts him to sleep. He did need to increase the dose a little because his body got used to it.
    Hope this helps.

    Old 08-05-2005, 10:33 PM   #7
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    Re: RSD and Insomnia

    Hi Everyone
    . Very interesting to bring up the sleep subject. Yes I think we all have had our own horror stories on sleep. When I first got injured the sleep was the first to go. You are in soooo much pain that you can't get comfortable. Then mix in the temp changes the body and your home thermostat has and you have an all night tv nightmare!I used to dress in layers when I slept. Oh and let's not forget the PILLOWS!! I have 20 pillows of all shapes and sizes. They cover half of the bed, and then I have them on the couch and one even in my car!
    Meds affect different people. Remeron was the best for me, but when I closed my wc case and had to buy it, it cost $85 for a month. Now I've switched to amitrptlyne 50 mg. I also find that a muscle relaxer or xanax taken at bedtime usually knocks me out.
    But since I've been on the STS machine, in March 2004, after 3 treatments, I slept for the first time since I had RSD!!! That's when I bought the machine for home use. To get my sleep back was heaven and well worth the price of the machine. Now I sleep pretty well, as long as my stress levels are down. I don't work, but I am a single mom.
    Lately though, and this just started, that when I get up to go tho the bathroom in the middle of the night, my right leg (non RSD one) is completely numb. This is really freaking me out. I sit there for t0 minutes and I can't get up!! I don't know why. When I try to grab on to something, my weight just gives ooout on the numb leg and I fall. HAS THIS EVER HAPPENED TO ANYONE ELSE???? It happens every 3 nights, that I got to get my cane out of the trunk of my car and use it again. Very scary. Once I get into bed again, then I'm awake and turn on soft music and spray my sheets with lavender mist, but I refuse to turn the TV on again. I pray those days are gone. Any input I would deepl;y appreciate it. Aloha Skooze

    Old 08-06-2005, 05:44 PM   #8
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    Smile Re: RSD and Insomnia

    Hi Skooze,

    My left leg turns numb a lot too, but I've always thought it was from the bupivacaine in my pump. It usually happens when I sleep on my left side or when I sit for too long. Now that you're saying it happens to you (and you don't have a pump), it's making me think it might NOT be the pump?? IS VERY annoying. Sometimes it takes an hour to go away. I've fallen too because of it. Oh well.


    Old 08-07-2005, 09:20 PM   #9
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    Re: RSD and Insomnia

    Hi SHARON! Thanks for your reply. I just saw another specialist from Oahu on Saturday, and I took the results to my masuesse who could read all the medical lingo, and it's in a post all of it's own. But I know my leg goes numb if I drive too much, but I always sleep on my back. So check out the abnormal MRI post. I just try to breathe.Aloha Skooze

    Last edited by Skooze; 08-07-2005 at 09:21 PM.

    Old 08-08-2005, 05:27 AM   #10
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    Re: RSD and Insomnia

    it seema like everyone withrsds is having the same problems with sleep ,i am a widow living alone and have had many bad falls always in the night or early morning , many all nighters just like everyone else ihave not been able to sleep in my bed since the rsds started ,i have been resting in one of my recliner chairs with pillows above and around me ,isay resting because, sllep just does't happen and if it does it is only for about 1-2 hrs ,probably get this just from being exhausted. the lack of sleep has really taken it's toll.iam angry ,frustrated and miserable all of the dr has me on clonazapan3 times a day but it does not help i would give anything just for one good nights sleep. ps. sorry about the typing errors ,have been up all night again. peace and freedom from pain sandy chick58

    Old 08-08-2005, 08:47 AM   #11
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    Jewel2 HB User
    Re: RSD and Insomnia

    Hi Sandy,
    I know more than a few people who sleep in recliners since getting RSD. They must allow you to adjust your body more than in a bed.

    For me, now that the initial terrible pain has subsided, the residual emotional/sleep/cognitive problems of the RSD are the most difficult to manage.

    Take cae,

    Old 08-08-2005, 10:09 PM   #12
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    Re: RSD and Insomnia

    Hello everyone,

    Yes, sleep can definitely present a problem. I take a 1mg. zanax every evening at bedtime for sleep. I still wake at times but if need be I will take another 1/2. I think everyone on this board wants to live as normal of a life as we possibly can, and if that's the case than we must sleep. I've tried ambien, but I only sleep for a few hours with it. I hate the thought of anyone becoming dependent on a drug for any reason, but if it makes the difference in my functioning normally or not, than I choose the drug. One problem I think everyone has and may not realize, is that they get in a habit of not sleeping. You must make yourselves go to bed at a reasonable time. Take something to sleep and if you wake up than take something else. Just please get it ok'd with your doctor first. Don't want anyone dying from my advice. lol Take care, be strong, and you must learn to control the rsd and not let the rsd control you. Think positively, it's amazing how thinking positively can affect your control over this disease. I've gone from a wheelchair to walking normally, through my faith in God, a lot of hard times, and the will to beat this condition.
    I have no idea where I might be a month from now, but today I got up, took my daughter to her 1st day of school, went to work, ran errands and I'm getting ready for bed to do it all over again tomorrow. Yes, I hurt this evening. Used my tens, took 800 mg. of ibruprofen, and have loritab to take if that doesn't work. I know that many of you hurt much worse than me, but please don't give up. Just see yourself doing something tomorrow than you couldn't do today. Visualize it and do it. And the day after that do it again. You can get better. My heart is with all of you, as are my prayers.

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