Research Brief
New research demonstrates that the sleep problems associated with fibromyalgia have a substantial impact on quality of life, suggesting that sleep problems may need to be more of a focus for treatment.
Fibromyalgia is frequently accompanied by sleep disorders, including:
However, another sleep problem is suspected of being a core feature of the illness. It's called "unrefreshing sleep."
In this study of nearly 2,200 people with fibromyalgia, researchers report that:
- 11% reported no symptoms related to sleep difficulty,
- Nearly 26% reported one symptoms related to sleep difficulty,
- And 63.5% reported two or more such symptoms.
The more symptoms people reported, the worse they rated their health-related quality of life. The impact of sleep-related problems was significantly greater for people with fibromyalgia than for health people in the control group, suggesting "a uniqueness of the burden of sleep difficulties" for people with this condition.
Researchers concluded that sleep problems should be emphasized more by doctors and patients when deciding on treatments.
My Perspective
I whole-heartedly believe that our sleep problems should get more attention. Some experts won't even diagnose fibromyalgia in someone who doesn't have disrupted sleep, and some researchers believe the illness may be the result of long-term sleep dysfunction.
While that may not be true of every case, I think it applies to at least one subgroup. I've had sleep disorders my entire life, and I do believe they lead to poor healing, chronic pain, and, eventually, fibromyalgia.
Most of us know that the better we sleep, the better we feel - and vise versa. However, the goal of treatment for most of us is alleviating pain, with little consideration for the fact that improving sleep quality may well be the best way achieve pain relief.
A few years ago, I saw research calling for sleep studies as part of the fibromyalgia diagnosis and treatment process. While it's an expensive and, quite honestly, grueling process, I agree with that. (See: Getting a Sleep Study with Fibromyalgia
Have you focused on getting sleep problems diagnosed and treated? What helps you sleep better? What sleep treatments haven't worked for you? Leave your comments below!
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Funny that I stumbled across this article. I was diagnosed with FM about a year ago, I did my 1st sleep study this past week. I have not gotten the results yet. I am curious what my Dr will have to say. I swear if I could sleep better, my life would be better!
I have had sleep studies done and get very little Stage 4 and Rem sleep. I did take Xyrem for several months and it worked but it cost over $400 a month with a prescription plan. I went off it to try another program and when that failed I went back on it but could no longer tolerate it. How do we get Rem sleep?
When I was diagnosed with FMS in 1993, the MD who made the diagnosis told me it was a sleep disorder. He said that my body wasn’t getting enough stage 4 sleep and without it the body can’t release certain chemicals needed to heal the every day stresses on the body. He was confident that with lifestyle changes (strict sleep schedule, increased activity, lower stress levels and less alcohol & caffeine) and medication to help me get quality sleep that the majority of my symptoms, especially the pain, could be controlled. He was right. I didn’t have another major FMS flare until 2008 when multiple factors including mold exposure, stress and a virus caused a cascading effect on my health that I’m still dealing with. However, the FMS flare itself only lasted through 2009. I got it under control once I started focusing on sleep quality again rather than other theories of the disease. In fact, before Fibromyalgia became a well-known disorder, I simply told people I had a sleep disorder.
Marcia, I’m on Xyrem now, have been for over 5 years. Luckily my copay is $35. I go onto medicare in a year, and I will probably not have a good enough prescription plan to get it. I have also started taking amitriptylene 25 mg at bedtime. And it also makes me sleep very deep. I was on melatonin and tramadol for a few years before the Xyrem and that helped too. My daughter takes klonopin for sleep at night. there are other alternatives, just takes awhile to figure out which ones work the best for you.
I’ve had fibromyalgia for almost 5 years but was diagnosed only 3 years ago. Last January the pain specialist I see who treats my fibro recommended I get a sleep study done because of my complaints about always being extremely exhausted. I try to get a good nights sleep but was always waking up exhausted. I would have days where I would almost nod off sitting at my desk at work. Weekends I would sleep most of the day and all night . My son had told me for years that I occasionally snore in my sleep so I decided it was a good idea.
I got the results last May and I was surprised to find out I was diagnosed with moderate sleep apnea. The morning after the first night I used a CPAP machine I woke up with the sensation of being able to breath freely – which was very uncommon for me! I reluctantly purchased a CPAP machine. I immensely dislike my CPAP machine and it has taken months to become accustomed to it. BUT I can feel a difference in my body when I use it.
When I use the machine I feel more awake and alert, and the achyness and soreness from fibromyalgia is noticeably less (although not gone). It makes a big enough difference that I reluctantly use it on a regular basis. I truly believe that there is a link between “unrefreshed sleep” and fibromyalgia. I am still tired a lot, I think it’s going to take a while to get my body back to where it should be. I must have spent years and years being sleep deprived by my sleep apnea.
My sleep doctor said that using a CPAP will help speed up my metabolism and help with weight loss – I’m all for that! I’m hoping that the more I use the CPAP the more I’ll see the benefits of it.
I had a sleep study and was told I was fine by the technician. 3 months later I got a letter from the doctor who actually “read” the study who stated I had moderately severe sleep apnea and had to return for a second study, this time with a CPAP machine. I took my melatonin, turned my iPod on at it’s lowest setting listening to my mellowest music and had my best night’s sleep in years. The tech had a hard time waking me.
Now I’m back at work but I work a very late swing shift and my sleep problems have returned along with my pain. Even with the CPAP, I wake several times during the day and frequently cannot return to sleep. Let me tell you, day sleeping and fibromyalgia do not go together.
I have been using Xyrem, (sodium oxybate) for sleep, the last six years. That aand my vpap machine, gives me the kind of sleep, stage 4, restorative sleep, that I cannot make on my own. Without decent sleep, the pain was so great that my pain meds kept me groggy all day. Still, no sleep.
After finding a sleep specialist and getting good counselling, my life was salvalged. I go out most days now, take exercise: Pilates, Yoga, and Feldenkrais. My pain levels are so down, that I need and use much l.ess opiates. I can read books again, am taking a college class and am so grateful to my sleep Dr., to Xyrem , from Jazz Pharma. in Palo Alto, CA.
This illness can steal our whole life we are not vigilent, if we do not have a good support system, if we are not offered the best professional help. Now I am able to travel and visit grandchildren. These last few years of my life are so improved, Blessings to the makers of Xyrem. A drug that is FDA approved for Narcolepsy but not for Fibromyalgia. I use it off label. Wish all my fiberfriends could use it, too.
First, I would like to know how the above readers get Xyrem, because it has never been approved for FMS, only narcolepsy, and they will not prescribe this very controlled drug otherwise. It has been studied, and proven that Xyrem is the BEST sleep medication for CFS/FMS, but the FDA never approved it for those reasons I can’t sleep for several reasons, mainly pain. I even have an adjustable bed! I adjust it at least seven to ten times a night, trying to get comfortable. I’m thrilled if I get five hours sleep!! I also use a CPAP machine, and that wakes me also with all the leaking, even though I have gone through countless masks. Finally, sleep is NEVER refreshing for me. I might not as well wasted my time. Wish I could do something, this has been going on for years. The pain is unbearable!!
I have always been a light sleeper but my sleep has been getting worse and probally what led to my finaly being diagonosed with FM & CFS/ME you get so sick of waking up tired. Interestingly both my mum & her sister (both who also has FM) have been diagnosed with sleep apena (my mum only recently) and i have just been diagnosed and am about to have a sleep study done so will be interesting to see what they say (the doc thinks mine might be fixed with a plate/mouth gaurd thing rather than the machine which would be good). Its a vicious cycle of bad sleep leads to more pain which leads to worse sleeps
FM is bad enough and when you don’t sleep the pain is worse – I have found relief with fabric in Goodnighties. I’m not the only on either – I say go for whatever works
I have had 2 sleep studies done, with findings of mild sleep apnea. I am also going thru peri-menopause/menopause as well as suffering from Chronic Fatigue Syndrome, Fibromyalgia and Chronic Headaches. I rarely fall asleep before 2am. I average about 6 hrs of sleep a night. I wish I knew exactly what was causing my insomnia. It could be anyone of the conditions I listed. I have found that the new Zzzquil does help me to fall asleep, but not every night.
hot flashes that seem to last forever.zzzzz product is just benedryl.
rather than taking tylenol pm cause it has acetamine which is bad as it accumulates in the liver, so I decided to take just the benedryl part. 2 benedryl tho makes me too thirsty to sleep right away. But what can u do?if u don’t get any sleepyour muscles won’t relax and if u get 3 doses of meds and u r up for 36 hours before your body finally goes to sleep
it’s just hell. Families expect the same from you everyday weather u r in so much pain u want to cry or not. They just think u r faking or a hypercondriac, u look the same. I don’t ever want my kids to see me cry.
I do thank the makers od cymbalta tho, wish I had it 18 years ago”
I only rarely, like once a month get into rem sleep. I can’t seem
to get past stage one even with benedryl.they have ” no dyee” benedryl at walgreens for anyone that might druel when u do sleep” if u do get pink on
your pillowcase from reg. red benedryl , u can get it out with oxyclean
but Iwould wear gloves if u r lettig it soak in the sink. I found out out I am allergic to it. But my favorite pillowcase is beautiful again.
you need to keep your muscles warm. I found having a warm mattress
pad with a waterproof sheet on top of that with a flanel sheet above that. I used electric blankets and they last about a year tops for e. I have had
this warmig pad for a couple of years and it has really helped. it has dual controls? I wouldn’t go over number 3 tho.
as to what didn’t work: meletonin, any teas,warm milk, anything