I strongly refer you to Jax1964. She got Fibro after a very serious car accident. She got lost of information and experience that you could probably benefit from. She and I correspond all the time. Tell her I sent you, and write me back, please. Go to "forums" and type her name under "people".
Sorry, mean't that last comment for lovesbostons & everyone in conversation! I'm new to the forums & still figuring them out.
Hi. Have you gone in for a sleep test? Ironically, to get the pain levels down enough to sleep well we must sleep first!
I've had fibro since I was 13, 26 years now. My sleep cocktail works better then it ever has! I take a small dose of trazadone, a large dose of luvox (both SSRIs) and a small dose of Mirapex (for muscle spasms). Two nights in a sleep clinic showed the need for the Mirapex, an anti-spasmatic.
For pain, the only thing that helps (and thank goodness it does) is Advil Cold & Sinus. I too have resisted anything strong as a pain killer for fear of what I'd do next if it stopped working. I also find that getting up, stretching and/or massaging trigger points can ease things enough to get a few more good hours of sleep in.
I wish you relief!
Oh, boy, I sure do understand the sleepless nights! Sometimes it's the fibro flare and pain that just won't let me sleep, other times it's the migraines. Lately, it's been really bad allergies. I just do what I can to make do or it would get me down and depression would only make the cycle worse and create a deeper hole that is hard to crawl back out of.
Another wonderful fun-filled night!
So last night I couldn't sleep even with low pain levels - sleepwalked (and drove) thru the day. Went to bed at 10:30, took meds, settled in - no sleep! Finally dozed off sometime after midnight, then the pain kicked in. Worst ever since being diagnosed. It went back to my hips & glutes which haven't been in play for a while, in addition to all the usual places.
sometime around 5:30 I woke up from a dream in which I had run for miles and was waiting for a car to pick me up that didn't come. I was standing and limping in pain.
When I woke up, the first thing I thought was: well if I had a dream I must have gotten a LITTLE sleep!
Have to go to the gym today - haven't been in a week & no one wants an out-of-shape trainer. This is not a good start!
Thanks all, just wanted to vent to those who get it!
OH wow... I am right there with the rest of you!
I do the same thing with taking half of a Xanax and just hope for any sleep at all! If I get 6 hours of sleep - interrupted or not - I consider myself 'lucky'!
Definitely work with your Dr to find something that helps you!
Oh can I relate! Last night I turned out the light about 11 (early for me) then laid there awake til 2:30. Finally at 2:30 I took half a xanax, dozed off around 4 and slept til around 8. Once the dogs knew I was awake again, that was it for the morning. I probably should have just taken the xanax in the beginning, but I'm trying to use a natural sleep aid when I can because the xanax makes me foggy in the morning, and I'm already foggy enough from lack of sleep & general fibro fog.
None of the other sleep meds work as well as xanax for me, and as you can see, that bar is not set very high! Ambien & lunesta etc will help me fall asleep but I wake up after 2-3 hrs and am WIDE awake. With xanax, I wake up, but I can usually retain enough of the sleepy feeling to fall back asleep.
What's especially frustrating is a lot of the nights I sleep the worst, the pain is usually not that bad. At least that would give me something to blame it on!
I'm sorry you have such trouble sleeping. Believe me, I can relate very well! With me, I typically cannot fall asleep until at least 11pm (usually more like midnight or after) - wake up several times during the night and it is RARE, RARE, RARE for me to sleep beyond 5am. My average is about 4-5 hours a night. On a rare night I can manage about 6, but again, that is 6 hours of being in bed, not necessarily sleeping the entire time and on average, I would say I wake up 3-4 times a night, either because I am uncomfortable and need to reposition, or I need to use the bathroom.
I do take Ambien at night and some nights it does help me to fall asleep faster, but it doesn't help much to KEEP me asleep. I used to use the Ambien CR and that did a much better job of that, however, my insurance no longer covers the CR and since there is no generic for that one, it is cost prohibitive for me, so I stick with the "regular" Ambien.
Have you talked to your doctor about trying a sleep aid? It's not uncommon for fibro patients to need them - insomnia is a HUGE part of fibro/cfs. It's definitely a vicious circle - we can't sleep because we hurt and we hurt more because we're not sleeping well.
I was on Lyrica for about two years before I had to stop taking it due to severe side effects. I've tried both Cymbalta and Savella, but can't take either one - they make me VERY hyper, make my heart race, make me dizzy and actually increase my pain and trouble sleeping. I have that same type of reaction to all the SSRI's that they've tried me on that sometimes help fibro patients. I do take narcotic pain meds, but I do also have other chronic pain issues (severe arthritis, DDD and lupus) in addition to the fibro. If you think narcotic pain meds might help, don't be afraid to discuss this with your doctor. Definitely start off on the lowest dose of whatever that you can get away with and I would also say to try not to use the narcotics as a first line of defense against the pain - try OTC meds when the pain is not as bad and then use the narcotics ones when you're having a more diffcult day. If you're concerned about the meds not working after a time (very common with narcotic meds), this should help reduce the possibility of this happening. Also, everyone is different - everyone handles medication differently - one person may get "tolerant" of a medication faster than another person - and some people are able to stay at their original medication dose all their lives. The important thing is to work with your doctor to find what works best for YOU. As I'm sure you already know, finding the right medication/s to deal with fibro is a lot of trial and error, so please try not to get discouraged - just keep working with your doctor until you can find a med or combination of meds that work well for you.
Best of luck!