Just saw my new Fibro/ Pain doctor yesterday for the 2nd time and we went through the list of all the meds I have used for sleep, including melatonin and liquid magnesium. She was amazed that nothing has helped for extended periods of time and I am SO tired. I am still working fulltime and really flared up this summer. Am caught between a rock and a hard place ( ooh, not so fun for us with pain). I am supposed to exercise and get sleep to help end this cycle and help ward off future flares. How do I do this when I am exhausted from getting up from my desk 40-50 times, sitting at a computer at least 6 hrs a day and walking the halls of the school office too many times to count? I don’t even remember driving home some days, let alone go and work out in the warm water pool at the fitness center. My mind doesn’t want to stop working because I personally get satisfaction from work , even though its terribly stressing me out and I see myself making mistakes. I am working with a therapist to get over the mindset of " it won’t operate well without me" and the guilt associated with it. My boss is wonderful and told me to sleep in and come in later, but I know the staff with show resentment. And the human being does not like being disliked! I know I should get over it, but its hard. Doctor says I can’t do any harm physically but am afraid it will. No sleep, increase pain = accident waiting to happen.
Any suggestions for sleep besides the cool room, warm milk( lactose intolerant), warm bath, etc? I am desperate!
I have difficulty sleeping only on occasion. I take so many “sleepy” drugs at night I seem ok. Doesn’t take away the pain or feeling like I never slept at all though. I take xanax, citlopram, soma and gabupentin and am on fentanyl patch and sometimes I take melatonin. I wish you luck, the sleepy, pain daze stinks!
I have tried melatonin, as well as all the other sleeping pills out there and combinations of things, but I just can’t stay asleep. I am constantly waking up - sometimes from the pain - other times just because. I just can’t keep up at this pace with no restorative sleep and increasing pain. Doctor was talking about trying old school med - Dalmane - never tried that, but waiting to get rest of medical records from my primary for the last 12 years first. Will probably take her 2 years to weed through them! Trying to keep my sense of humor but its getting ever so hard.
I tried tryptophan and it works well. I found out about it when I googled Wong he writes about it helping sleep and as an appetite suppressant. Might be worth a try. barb
Have you tried Lunesta? BESt sleep aid ever altho it's very expensive which is why i no longer take it because my insurance wouldn't cover it.
You ever try watching a really boring movie? I know it sounds stupid but I am serious. . .when I can't sleep (which is often) I go online and find either a movie I have never seen before that got horrible reviews. . . or channel surf and find the most gawd awful boring movie and attempt to watch it. I believe that something in our brains know boredom and respond. . .I turn off all the lights prepare for bed, the boredom or stupidity of the movie forces me to shut down and go to sleep. It's not much but It works for me so I hope it will work for you.
Hi Sandi,
The first Neurologist I saw recommended Benadryl, of course this is before any diagosis was made. The fact that I now know I have Sjogrens, which dries you out, would not make taking it on a regular basis a great idea.
Sleep is a big problem for me too, and it is certainly pain related, and pain is always worse at night. Sometimes the morphine works, sometime the Valium works..The GP said I can take both, giving a 2 hour wait. Sometimes even the combo does not help.
The Rheumatologist's office wanted to change my appointment to 8:00, asked if I could make it, I said only if that is at night, that many times I am still up at that hour, and I see I am getting very close to that time right now.
I feel safe in telling you that Renie and Rachel also have this problem, we discuss it often, and are usually up all night together right here!
Hope that between the members and the Doctors that you can find a solution to get a good night's sleep!
Hugs,
SK
Tried Lunesta for about 2 years with some relief, but wasn’t experiencing a lot of pain during that time (yeah!). Insurance company then stopped paying for it unless my PCP wrote a letter documenting need - and instead said let’s try Ambien, which was awful. Then he left the practice and I have been struggling since August of 2011. My job has gotten more stressful with more demands and its been hell since. That’s when I tried liquid magnesium, melatonin and some other herbs for sleep and pain.
After a pt session yesterday with a much better therapist, got a pretty bad overwhelming reaction to electro stim- she hooked it up to my neck and my cheeks, as all was so tight. After about 5 minutes I sort of freaked out cuz the sensation was just so bad, and then last night didn’t get to sleep until 4 AM and had to get up at 5:30 for work. Think the stim fried my chances of getting any sleep. Anybody else experienced that? I have a tens unit and never have a problem, but then I don’t put it on my face or head. Typing this on my lunch - wish I could now take a nap!
Thanks for the suggestions - at this point will try anything!
i have not found anything that gives long periods of sleep. My doctor has me on Trazadone, which will give me about 4-5 hours of good sleep most nights. I was not fond of using a sleeping pill, but my desperation for sleep took over. I can not take most meds used for fibromyalgia, so this was really needed so I could at least get sleep. It is gentle and I do not wake up feeling groggy, it just doesn't last as long as I would like.
Thanks, all. I am taking notes to talk with her when she calls me. Never tried Trazadone - never heard of it - but will throw it out to her. Dr. Ness said it could be a problem finding one that works, due to how my brain reacts to it. This is the first doctor who is convinced that Fibro affects the are of the brand that controls sleep and pain. Hallelujah! I’ll say it again Hallelujah!!! I wasn’t so sure she was on our side and believed we are crazy - but I think I won the lottery on this one. You don’t know how good it feels to say that after years and years. Not going to throw in the towel now!
That’s why this site is so important - people have such great suggestions and I am now taking control of my Fibro, it’s not taking control of me! (Thanks for that one, Mo 
Grazed one is one of the older antidepressants and is generic so relatively cheap. It made me sleepy and allowed maybe a couple of hours of sleep at the beginning of the night but did not help me sleep all night. But then again, I have suffered insomnia since I was a teenager (probably due to all the stress in my life) and my sleep issues have been very difficult to treat. I take Ambien CR, 12.5 mg, and it puts me to sleep and I generally get at least 7 hours of sleep, maybe waking up on e in the night. When I was in the hospital, I was miserable cuz I couldn’t take anything by mouth and apparently Ambien doesn’t come in IV form so they were giving me Ativan, an anti- anxiety med, to help me sleep. It didn’t help very much, and you already don’t sleep when you are in the hospital, so I was very glad to be able to take it again. Good luck finding something that works for you. Oh, BTW, my doc told me Ambien was not addictive, that if I stopped taking it I would have some rebound insomnia and then the same old sleep problems but there would not be withdrawals.
Mo - I’ve been taking Lunesta for the last 3 nights. My GP had given me a script but it was only 2 mg. and when I used to be on it about 3 years ago I was on 3 mg. the 2 mg. didn’t do anything so chop chop I went and made myself a 3 mg. and the first night I got 3 straight hours of sleep right before I got up - that’s a good thing! The next night - nothing. Last night was better again, slept good from 1-4. It is terribly expensive but if I can get some sleep - it’s worth it. Still waiting to hear from the doc to see what she has cooked up for me. I honestly believe that I can’t or won’t be able to continue to work full time if I don’t get some good sleep.
Sandi, oh how my heart goes out to you ! Do you see a patern to this 4 am crap ? I ask because 2-3 days before my period I am up till 3 am no matter what I do, and then when I ovulate, I can not function without 9 hrs sleep, I was forced to stop working this year( long story) but when i worked I was getting about 6 hrs sleep, always with the help of 1/2 ambien, 1 mg Ativan , my sleepy time tea at bedtime. And lately I put a relaxing app on my phone ( actually a hypnotist ) and I listen to it when trying to go to sleep, always go to sleep at the same point ( at the end he snaps his fingers to wake you up ) the first week I listened i actually woke up when he told me to, lol, but then fall right back to sleep, now I don’t even wake up. Just a thought.
The whole PMS thing that keeps me awake , is treated with a diuretic my GYN said the increase in fluid in our body causes pressure on the brain causing insomnia, and it sounds like the stress at work is effecting your sleep.
Let me assure you, the job can manage without you, your health has got to come first, when I went out, my boss had to do my job because there was no one that could do it, and she didn’t even know how to, they have managed and I don’t have the stress of wondering how am I going to get through the day, it’s putting more stress on you than you think, then it’s a vicious cycle.
anyway I do remember taking dalmane years ago, I hope you can try it. I’m also going for a sleep study next week, have you done that, I’m sure you have tryed everything, but I have a feeling the stress of the job is keeping you wake and that will affect the fibro! Can you work part time, a short leave ? With out sleep the fibro will not get better, when I worked full time and didn’t sleep I felt like I was dying ! Your lucky to have a boss that understands, I also got so much satisfaction from my job, I prob would never have left, I miss it so much, but your so right about the staff being resentful, wow can I relate,
Btw amitriptyline is a great med for sleep
Hope you get some zzzzzzz
Hugs
Wow, Dee - you sound just like my therapist! Can I use you instead if what I’m paying her? Think you have a new career you’ve got me down to a T, the whole work thing and the cycle of pain, no sleep. I find the less sleep I get., the more pain I’m in and the foggier I am and I get very emotional on those days. Can cry over the littlest thing. I never go to bed thinking about work or anything that is bugging me - I have to read before I fall asleep or my brain won’t shut down and then I would. It’s been my first tranquilizer for as long as I can remember! Even when I wake up during the night I don’t go over in mind anything but I need to move around cuz I’m in pain and can only sleep on my back (due to neck & shoulder problems) and I meditate myself back to sleep. Rarely do I lay there for hours trying to get back - but it happens. It’s just I keep waking up all night! During my sleep study I woke up 22 times and didn’t get into REM sleep until 430 and they woke me up at 6:00 am. During REM I only stopped breathing 3 times, which doesn’t warrant a CPAP cuz I don’t get into the deep sleep where apnea would occur.
My first try at sleep meds was with amitriptylene, which worked for a while and then it was on to many other antidepressants in low doses, and other sleep meds. Some would help for a few months and I’d be back sleepless and in more pain. I have a drawer full of meds that haven’t expired so I’m doing a little experimenting with trying some again for a few nights to see what happens (I called my Fibro doc to get the ok while she gets all my records to see what I’ve been on a for how long). Last night I took an Ambien and I didn’t have any horrible dreams ( like in the past) and I was able to stay asleep until my husbands alarm kept going off at 4:40am. Had to get up and yell at him to shut it off! Then was hard to get back to sleep on my day off. A real bummer I too take hydrochlorathiazide with my blood pressure meds and it acts as a diuretic. Am luckily past menopause ( Yeah) but they still want me to take.
Still woke up with pain but no fog (let the sunshine in!!!) so I might tackle painting my bathroom today. Dee, thanks for your comments - I am really working hard at saying no and working at a slower pace. I just got my D-Ribose in the mail yesterday and took one last night (maybe that helped me sleep) and am going to go chew another one. I wish I had found this site eons ago!!!
Hi Sandi,
Like SK said, I'm right there with you on insomnia! I actually rarely get tired at all... usually only after being awake for more than 36 hours or so. I literally have to knock myself out to go to sleep, and they only way I can is with either benzos (xanax, klonopin) or Zanaflex, the muscle relaxer. For some reason I'm very sensitive to it.
Ambien is horrible with me... I can only sleep for 3 hours, and then I jolt awake in severe pain that only lasts for a few minutes, but it's excruciating when it happens. I'd rather just stay awake!
Doctors are moving back to the old-school tricyclic antidepressants in treating FMS, since there have been many studies showing that we don't respond to opiates for pain relief. They feel that we actually get more relief from NSAIDS or Tylenol than we will a narcotic. So they are back to using amitriptyline and nortriptyline, which helps FMS and sleep.
I see you had a sleep study, did they give you any final determinations? Did you have an appointment with the sleep doctor himself beforehand, or just ordered by your own doctor? Here when we have a sleep study, it's ordered by your PCP or pulmonologist, read by the sleep doctor, and then you follow up with the first doctor. So we never get to actually see or talk to the sleep doctor, and he doesn't know our issues and what to look for. We are usually only referred with a form stating "insomnia" or the symptoms of apnea, but not much detailed info. In larger practices, they have doctors that have appointments before the study, and it's so much more productive because they know what they are watching for. Plus, they are knowledgeable about the disorders that cause misfiring in our nervous systems, and can give us some help. is that available to you?
Wishing you a visit from the Sandman !
Hugs, Renie
Have you tried flexeril in combination with amitriptaline? That knocks me out. If that doesn’t work I add Xanax which does the trick. Good luck!! xx
PS I didn’t qualify for cpap by insurance rules so I rented a unit. It might be worth a try to rent one and see if it helps!
Yep, that is what the rheumie put me on. I was already taking flexeril at night with clonazepam. Didn’t make a difference except give me a dry mouth during the day. Been experimenting per my pain doctors instructions and retrying Lunesta for a few days and then trying Ambien for a few. I seem to get longer sleep periods with Ambien, without the horrible nightmares I experienced when initially trying it. On vacation this week so my stress level is wayyyyyyyyy down - love it- so will so how it works while I’m working.
Hi, for me tryptophan works. it’s over the counter and worked straight away. If you google Wong he write on it. Barb
I will start googling! Anytime I can get something over the counter its a great day. Thanks, Barb.
My pleasure. barb
hey mo i dont know if u know about persription programs. they will say that is u have insurance u would qulifiy but when i did have insurance they only covered $250 a year on meds. so i get the form for the med i needed and i told them i would not be able to afford it. since they will ask for your insurence info they will b able to confirm that your insurance will not cover Lunesta.
i am not sure if it will work but its worth a try. make sure to include that u have tried other meds with no luck.
to get the form u need go to lunesta's web site or a perscription assistace site and get the form fill out your portion and make sure u look for other things they need like last years tax forms and pay stubs. differernt companys require different things. then u will need your dr to fill out his/her portion. i hope u quilify.