Better Sleep Month Series
A primary feature of fibromyalgia is sleep disturbance, and we frequently have one or more diagnosable sleep disorders. (I have 4 diagnosed plus another suspected.) The most common sleep disorders we have are:
- Insomnia
- Sleep apnea
- Restless legs syndrome
- Bruxism (teeth grinding)
These can develop at any time - my insomnia pre-dated fibromyalgia, but the rest have showed up at different times after my diagnosis. A certain amount of fatigue is normal in us, but if you have a high level of fatigue, or if your level of fatigue suddenly changes, it's definitely something to talk to your doctor about. Getting proper treatment for sleep disorders can make a huge difference in how you feel.
What sleep disorders do you have? Were they diagnosed with a sleep study or based on symptoms? How have you dealt with them? Help us all learn by leaving a comment below!
Photo © Barros & Barros/Getty Images
I was diagnosed 11 years ago with fibro, over 30 years ago with CFS and have suffered from insomnia since childhood.
In all these years not one of my doctors have suggested that I have a sleep study done. And when I suggested it, I was told I didn’t need one or that it was a waste of time.
I have all the symptoms mentioned, and more. What do you do when you can’t get anyone to refer you and poo-poos the studies as a waste?
I’m EXHAUSTED!
The most common sleep disorder in fibromyalgia is “alpha-delta sleep”, also sometimes called the “alpha-EEG anomaly”. It describes the intrusion of rapid alpha brain waves (associated with wakefulness) into the period of sleep which should be dominated by the slower delta waves. The best estimates are that about 70% of fibromyalgia sufferers have this sleep disorder. The usual sleeping pills and assorted supplements that people take are fairly useless for treating this, but fortunately there is a solution: Xyrem. It has been well documented that Xyrem dramatically reverses alpha-delta sleep, which is presumably why it is the most effective drug there is for fibromyalgia. Unfortunately, some doctors are hesitant to prescribe it and it is ridiculously expensive. But people should keep in mind that this problem can be diagnosed by a sleep study and fixed with Xyrem. The published evidence is overwhelming.
i’ve been using xyrem for almost three years now, twice a night. it has enabled me to start living again after 23 years of fibromyalgia. the deep sleep,the restorative stage 4 sleep, took away most of the pain and therefore i could reduce the use of pain medication and begin exercising and shopping and going to movies, and all that because of xyrem and my sleep specialist.
I was diagnosed with FMS two years ago after many years of various medical problems. I’ve suffered with insomnia for years. Two and a half years ago, after a “fuzzy” spot on a brain MRI, the neurologist thought I had sleep apnea, but a short sleep study showed that was not the case. He ordered a longer sleep study as he then suspected narcolepsy. The study finally showed Restless Leg Syndrome and Bruxism. This article only confirmed my suspicions that all this is related. Thanks!
I have had FMS for many year, but only diagnosed 2 years. My problem is day sleep. I sleep all night, wake at 9 am and somdays and really! have to sleep at 11 am. It’s embarassing to tell my daughter or husband I sorry but I have to sleep NOW. Sometimes I wake 1/2- 1 hr feeling better only to NEED to sleep at 3 pm. I have taken Imovane for sleep for 10 years. Do you think maybe I’m dealing with something else. I blame FMS for everything that’s wrong with me. FMS will not kill me, what I really have that’s diagnosed as FMS will.
I’ve suffered from varying degrees of insomnia most of my life and my dentist told me I was grinding my teeth years ago. I was diagnosed with fibromyalgia about 5 years ago after many years of pain. A sleep study was not ordered until about 18 months ago. That diagnosed sleep apnea.
I am now on CPAP and it has helped. I still have frequent migraines but I am not waking up with them as often. I use Ambien CR and it along with the CPAP gives me at least 4-5 hours of restful sleep. I’m still fatigued and painful to one degree or another all of the time but I think the CPAP has made a difference in my mental function.
I really was starting to think I had early Alzheimer’s and I’m only 60. So, the improvement in mental function has helped me feel a little better about myself.
I think that people with fibro should also be treated for depression if at all possible. Fibro took my life away and it the hardest thing I have to do is be hopeful. How can anything so life altering not cause some level of depression?
Bev,
Some thoughts for you:
First, with the day sleep, it sounds like you either have ME/CFS or narcolepsy. Here’s a post about how similar they are: Chronic Fatigue Syndrome or Narcolepsy?
If it seems more like narcolepsy, you might want to try a gluten-free diet. There’s not a proven connection, but enough of us have gluten-triggered narcolepsy symptoms that it’s worth a try.
sandford girl. I agree with you about the depression component. Fibromyalgia is LIFE ALTERING. It took me many years to come to terms with the changes in my life. Lack of really good sleep added or may well be the single factor for the sore muscles we have. I have been on Ambiem now for over nine years, half a pill every night. I would probably have some awful withdrawals if I ever went off them. I have never had a sleep test.
My dentist told me I had a bruxism (teeth grinding) problem a few months before I got my fibro diagnosis.
I have non-restorative sleep. I’ve had a sleep study done and they ruled out sleep apnea and breathing problems. I don’t think I got any specific feedback other than yes, I have some kind of unspecified sleep problem. My sleep efficiency was about 70%, which doesn’t sound bad but in the morning after the study, I was in a terribly foul mood — insisting the study was useless because I didn’t sleep at all. When they told me, yes, you’ve slept, I thought they were just trying to get rid of me.
It felt like I’d laid there all night telling myself I had to sleep. I did not feel like I slept and I felt like time was passing and I was just lying there.
I wish they were less breathing-oriented and could have given me more specific feedback, but I’ve been helped by trazadone and Soma at night (I have bad muscle spasms without a muscle relaxant).
Zyrem did nothing for me but an allergic reaction. I was hoping it would work, because it would have helped to eliminate my different pills. I do hope it continues to help other folks. As for now, my nightly cocktail is Lyrica and Ambien.
I was dx with Fibro 10 yrs ago, but 2 yrs ago started having brain zaps just as I was falling asleep. Had insomnia long before that but never the zaps. Happened after I went on Wellbutrin, so it may have lowered my seizure threshold. Anyway, sleep study confirmed it is happening all night and even when I don’t feel them. Like mini nocturnal seizures with leg jerks.