I will admit that even through my teen years, which was a looong time ago, that I never slept well. But now I am lucky to get 3-4 hours a night. I go to bed so exhausted, fall asleep and am awake an hour or so later. If I am lucky I can go back to sleep for a while, but it is constant tossing and turning all night. Sometimes it is due to pain other times I don't know why. I am always tired, but my body just doesn't seem to want to shut down. I don't drink caffeine or eat at night which is what my dr always asks. I am not really pleased with my rheumy, but where I live I don't have a lot of choices. He doesn't seem to have a clue about SS. He says get on the internet, talk to others. Well I will admit it helps to know others are dealing with the same types of things, but it doesn't make me feel very confidant about him. Does anyone have the same problem and how do you handle it?
Sleep disorders are very common with fibromyalgia - right now, I'm trying 1 mg of clonazepam at night to help, but I was still up way too early this morning :-\ I've tried Ambien in the past and hated the way I felt in the morning. My dr's keep mentioning sleep studies but those are so expensive... and all to tell me I don't sleep well!?
Sorry - I certainly understand how exhausted and frustrated you are!
I get those times often. I usually let it go for two nights before I will do one night of my husband's sleep medicine. (Reminder to myself - send my rheumy a note about what it is he takes so he can get my own prescription). Usually one night with the sleep aid, and I get back on track for awhile. When it hits, I tend to sleep two-three hours then wide awake. And although my body is completely exhausted, I cannot go to sleep.
Sleep issues are complicated and they often are like those dominoes that you sometimes see when someone pushes one it sets off a chain reaction - and then it just becomes a cycle - where what stopped your from sleeping is then made worse because you didn't sleep. The solution means finding all those little things that stop you from sleeping. Have you been checked for sleep apnea or had a sleep study? Worthwhile to have done especially if you snore. I never fell asleep in the evening in front of the TV or did any of the other things people normally do with they have sleep apnea - but when I was tested - I had it big time and with a C-Pap machine I had my first good night sleep in decades - and when I woke up I had less pain and depression, less brain fog etc - lack of a good night sleep affects so many aspects of our daily life. I lost a lot of weight and no longer have sleep apnea but I miss the machine because mine had a reservoir for water to add moisture and acted like a humidifier.
The other aspects to look at are issues keeping you from sleeping - getting control of pain for example. Are you depressed and/or do you ruminate (turn thoughts over and over in your head, analyzing the days events etc.) - a good therapist and possibly medication prescribed by a psychiatrist can help with that. I presume you are aware of "sleep hygiene" suggestions like going to bed at the same time, keeping the room cool etc. All these details can help - and if you can get some of them under control you might be able to break the horrible cycle you are stuck in right now. or at least find some improvement.
I too have trouble sleeping longer than 1-11/2 hours at a time during the night. My rheumy said the sleep is so important to battle the inflammation. She gave me trazadone and I have been averaging 4-5 hours a night these past couple weeks. I forgot how good it felt to wake up rested. Maybe you could try that medicine. My husband's lunesta would get me to sleep, but not keep me asleep.
Good luck
Cdb :)
I HATE the feeling of being exaghsted and not being able to sleep.
I play puzzle games in bed, it stops me from calculating how many hours I can get if I go to sleep right now!
I don't sleep well and tend to stay up late into the early am hours and sometimes don't fall asleep until 5 oclock when my husband wakes up. Then I want to sleep all day. This seems to have been a long time pattern with me.
When I was still working, I worked 8-5 and this schedule wouldn't work then. Often I'd get only 2 or 3 hours of sleep and when I came home hit the couch for 2 or 3 hours of sleep and then go back to bed around 1 or 2 am. I don't know why. I am not ruminating about problems. I have pain meds and am not usually in pain. I probably could use more exercise. Lucy
PS. I think the worst thing to do is count the hours of sleep you could get if you fell alseep now. If you are working, this is a big deal, and a not so good one. With me, I can stay in bed as long as I like. Maybe I should pretend I am working and make myself get up at 8 am.
Thanks for all the support and suggestions. I already take 2mg clonazepam at bedtime. I do keep to a schedule and I am not really a worrier. I have told all of this to my Dr and he says that is about all he could suggest. I have not had a sleep study as we have been without insurance for over a year and they are expensive.
I have trouble sleeping during flares. It doesn't matter if I cut out all caffeine and relax myself to death before bed I cannot sleep. I feel like I am tanked up on huge amounts of stimulants. My body will twitch and I will feel like I am buzzing like a neon sign.
When I feel like that, I take the generic for Ambien, 10 mg. After I take it, I absolutely must turn off my iPad and lie down to sleep. Within minutes, I am out like a light. If I am accidentally awake when it takes affect, I will hallucinate. It will allow me to sleep, usually 6 hours. I love that I don't feel hungover in the morning. I can take it for a few days or a week or so, and then stop it without ill effects.
When I am not flaring, I can fall asleep instantly and sleep 8-10 hours easily, unless a little, two-year-old foot kicks me in the face. Who knows, perhaps I have a sleep disorder, myself, but I feel that if I managing at least, then I am not going to pursue a sleep study due to cost; however, if it gets to the point that I am unable to sleep on most nights, then I will running to the sleep clinic.
Yes, sleep has been a persistent problem.
Originally, the main issue was non-restorative sleep. Come home from work and crash for 10-12 hrs and get up for work exhausted.
Then, the addition of wonky sleep patterns. The Rheumatologist I see has Sleep Disturbance listed with my other Dx.
After the neurologist treating me managed the chronic headaches, we addressed sleep. I started Ambien 5mg; worked for 2 nights then nothing. Increased to 10mg and it works intermittently. I really felt little to no effect. I tried taking it earlier without seeing a difference.
DH was in pharma research so I asked him to look at Cymbalta. I was taking it at AM and at bedtime.
We looked at the half life of Cymbalta and I have been taking it at dinner time and have now (knock on wood) been able to go to sleep for two weeks/every night. Instead of being up till 5-7 in the morning.
DH explained that Dr. will suggest taking meds at bedtime so people do not forget to take them, but some people need to adjust for their situation (talk to Dr.)
Quote from: sktaylor on May 15, 2012, 03:32:40 AM
I will admit that even through my teen years, which was a looong time ago, that I never slept well. But now I am lucky to get 3-4 hours a night. I go to bed so exhausted, fall asleep and am awake an hour or so later. If I am lucky I can go back to sleep for a while, but it is constant tossing and turning all night. Sometimes it is due to pain other times I don't know why. I am always tired, but my body just doesn't seem to want to shut down. I don't drink caffeine or eat at night which is what my dr always asks. I am not really pleased with my rheumy, but where I live I don't have a lot of choices. He doesn't seem to have a clue about SS. He says get on the internet, talk to others. Well I will admit it helps to know others are dealing with the same types of things, but it doesn't make me feel very confidant about him. Does anyone have the same problem and how do you handle it?
I wanted to add that I find that having a fan blowing on me helps me sleep. At this time I do not have it in the window as it is pulling in too much pollen...thinking about trying a filter between the fan and the window screen? The coolness and hum is soothing.
Are you getting out of the house enough? Fresh air? Daylight? and Melatonin for circadian rhythms (sleep/wake)
Re: Dr. telling you to go on the net.
The Dr. I see is the Dept. Head of Rheumatology at a teaching hospital/university and she gave me a flyer for this website. Since there is no cure, no one med fits all, posting here and reading is a form of self-investigation/discovery so I can "help" the Dr. tailor my individual treatment. I felt this advice (in my situation) was a definite plus. Rather than a previous GP who was clueless and mentioned "Mind over Body".
You have my sympathy I can be bouncing around the house at 1&2 in the morning and then fall asleep at work despite ever increasing coffee amounts. If you look on the internet you will find repeated warnings that you should not take Melatonin if you have autoimmune disease. Research has been finding that it can actually cause an inflamatory response.
Hello...just wanted to report in. End of week 3 of taking Cymbalta earlier (dinner time vs. bedtime) and have had 3 weeks of Ambien working. Again, this was after having the same dose not work at all and having bouts of being awake more than 24 hrs. I may try cutting the dose in half.
Melantonin: I did read that melatonin increases immunity. And could increase inflammation in those with RA. But, as it is produced by the human body and decreases with age and I KNOW that lack of sleep sets off a domino effect: sleep lose ----> physical stress ---> mental stress----> crash w/o restorative / quality REM.
Lack of sleep is a major trigger that will incapacitate me for days up to even a week. I decide to use it and my Dr. knows that I do. I just started using it again after a hiatus and the mental clarity ....feels liberating.
http://en.wikipedia.org/wiki/Melatonin#cite_note-pmid3783419-28 the references at the bottom are more interesting.
I have a fan blowing on me all night. It really helps me. Melatonin also helps me fall asleep. When I wake up I read until I fall asleep again. I look at it as reading time.
Also, I found out that any caffeine kept me from sleeping for about 15 years. (Now I can use it to stay awake in the daytime and still sleep -- eventually.) Try going cold turkey, or at least tapering off to nothing for about a month and see if that helps.
Sharon
Sleepless nights have become the norm for me the past few months - since Feb.
Have been on .5mg clonazepam (Klonopin) and on/off Ambien 5mg. The Ambien helps me to sleep but leaves me feeling like a zombie! I've tried Trazodone, Remeron - all leave me feeling the same.
It's like I'm between a rock and a hard place with sleep these days. Got an infection so went back on the Ambien for the past few days but really don't like it. I use it mainly as a "crutch" to get through the bad physical symptoms. Been to a sleep doc who recommended sleep restriction - only be in bed for as long as you sleep, then get out and do things. I tried it but ended up more exhausted and sick! If I was feeling better, I might try it again. I'd love to sleep naturally without all the drugs.
Yeah, hate the sleepless nights....especially when you have to work the next day, ugh. Some days I can sleep 4-5 hours straight and feel like a million, other days its barely an hour and then awake for the next 30 hours; misery. I'm on trazodone, and sometimes it works okay, other days not at all (get headaches from it though).
Hang in there Sktaylor and hopefully your doctors will be able to figure it out and help you soon.
Take care of yourself -
Patze
Thanks Patze. I got about 3 hours last night and now have a migraine. Plus the 90+ temps don't help any. I hope we will have insurance within the next four months. Then maybe I can get some of the tests done they are suggesting. But then again, how do I know which ones are truly necessary?
I sleep well most nights .. by taking...
200 mg of trazodone
1/2 Ambien
1 timed release melatonin
when I wake up in the night I take the other half of the Ambien
SLEEP is essential to the human body! :)
Quote from: jazzlover on May 28, 2012, 08:29:34 AM
I sleep well most nights .. by taking...
200 mg of trazodone
1/2 Ambien
1 timed release melatonin
when I wake up in the night I take the other half of the Ambien
SLEEP is essential to the human body! :)
Jazzlover....was wondering why you take 1/2 Ambien and time release melantonin?
I take the same combination. 10mg Ambien and cheap generic OTC 3mg melantonin (when they are on sale 1/2 price; I pick up two). Sometimes I'll wake 6-7 hr into sleep for water, then go back to sleep.
I require about 10 hrs of sleep to function. With this combo I wake alert and refreshed. So my theory is that my body need the 10hrs. of
RESTORATIVE sleep. Even then when I overdo...my body may need a nap.
At the onset of this syndrome...I would sleep for hours (I might as well have been an absentee Mom :'()....and get up stumbling, weighted, disoriented, .... so fatigued I wanted to cry.
Then, after a time only adding plaquinel......I could not sleep, the pain increased so we increased Cymbalta, and I really could not sleep even with the Ambien.(I moved the pm dose to 5pm, rather than bedtime...and now can sleep).
I was told Drs. instruct patients to take meds in the morning and at bedtime so that patients do not forget or skip a dose = better compliance. However, some patients metabolize, can respond differently to meds and taking them at a different time can be the simple solution. In my case with Cymbalta, I did not need to reduce/adjust dose.
You can look up the "half-life" of a med, and talk to Dr. to see if a time adjustment is warranted.