How Much Do You Sleep With Fibromyalgia & Chronic Fatigue Syndrome?

It seems I can never get enough sleep. I, like you, suffer from insomnia. However, since I no longer work I do what they advise against and sleep whenever the urge finally hits. Otherwise I just get more and more cranky and the pain gets worse.

I am constantly fighting fatigue. I usually stay in bed for 6-8 hours, but am awake on and off during that time – usually from pain or pins and needles. Sometimes sleep will not come and I have to wait for that last blast of fatigue. You know the one… where you get hit so hard, so fast that you have to find somewhere to sleep NOW. I’ve had what I thought was at least 7 hours of sleep and still been hit by this sort of fatigue and woken up 4 hours later… still wearing my gloves, hat, winter coat and boots. (I was just leaving the house when it hit and I had just enough time to get to my bed.) Lately though, by 3pm I’m wanting a nap, by 4pm I’m grumpy, by 5pm I need to sleep. A few hours later I’m fine – but then it makes it all the harder to sleep at night. It’s extremely hard to stick to the advice of not sleeping after 2pm during the day – especially when trying to force yourself to do that doesn’t actually stop your body from saying, ‘If you’re not going to bed – you can drop where you’re standing.’ I have finally been referred to a sleep clinic – but who knows what they’ll find.

is this the work week or the weekend? i am forced to sleep less due to work, so that sleep averages 7-10 hours a night. when the weekend arrives, i may be up a few hours, then down for a nap, which is a pattern i will repeat over the weekend. i don’t consider myself as having a ‘life’ when i only have two components in it–work, sleep, work, sleep. my doctor has me on melatonin, but nothing for the pain of fibromyalgia that has any effect. falliing asleep is not a problem, but staying there is! unrefreshing is the word.

Just for the record, insomnia is a psychiatric term and if you have ME/CFS or fibromyalgia, the inability to get enough rest is unlikely to be purely psychiatric if at all.

Doctors often prescribe a low dose of trazadone for sleep (not depression) and that combined with gabapentin or cyclobenzaprine for the pain can help patients stay asleep. Others prescribe Klonopin (an anti-seizure drug), doxepin (a tricyclic drug) or maybe a hypnotic like Ambien. Dr. Lapp has had some success with using low doses of melatonin at night and bright-light therapy in the morning.

Note: Melatonin helps some people, but there are a minority where it acts like speed – and if you have these diseases you know all about weird side effects.

Make sure your doctor monitors your liver and kidneys if you end up taking meds for years.

There’s no magic bullet, just trial and error.

From Your Guide: It’s not accurate to say that insomnia is a psychiatric term. It’s a medical term used to describe a sleep disorder with many possible causes that can include physical, psychological or lifestyle components. ~Adrienne

As a holistic doctor who has worked with Fibro patients for over two decades, I have discovered that the prescription sleeping pills, even though they might knock you out, never give the patient a feeling of resting. Melatonin can help in cases of minor insomnia, but I’ve found it mostly helpful in cases of jet lag. Stronger herbs and combinations are in order for someone with chronic insomnia like the Fibromyalgia experience. I use a combination of b vitamins, amino acids, herbs and natural neurotransmitters that helps a lot, especially when combined with appropriate minerals taken throughout the day. It sounds like a lot, but it’s all combined into one pill, so it isn’t taking a lot of different things. My patients sleep well!

It is hard to sleep with CFS therefore I take 15mg of Mirtatapine/Remeron 1/2 hour before bedtime. I sleep 8 to 81/2 hours. If I sleep longer it will take me longer to go to sleep the next night. Remeron was perscibed to reduce the headache that comes with CFS but it also aids in sleep and calms the nervous system down some. Hands and feet will be less cold as for relaxation of blood vessels. Cold feet and hands have been a problem for me since onset in 1990. Adalat had been used in the past for my cold feet as it is a vasodilator. Remeron is an antidepresent also used to treat pain syndromes which some Doctors may not know but I found in a persciption drug book after trying other antidepressents which are used for pain. The other ones had more unwanted side effects.

Ambien then lunesta and lastly trazadone. They all worked for a short period of time then lose effectiveness. Two weeks ago I was issued a medical marijuana card (I’m in California) After 6 years of various sleep aids and all their side effects I have been eating a marijuana brownie about an hour before bedtime. I took my last Rx sleep aid on the first day of the medical marijuana. This is absolutely the best sleep aid for me. I am now back on a regular sleep routine for the first time since coming down with cfs. To bed around 10pm and up around 6am and sleep pretty solid through the night. Getting a good nights sleep is certainly not the cure for CFS but it sure seems to improve my odds of having a “good day”. I have discontinued a total of three prescription medications. I know this is controversial. I did not take this decision lightly. The last time I smoked pot before this Richard Nixon was still in office. Of the twenty or so meds that various have prescribed this has helped the most.

Sleep is a difficult thing to achieve. I vary from 3 to 8 hours depending on the barometric pressure and its movement. Due to severe back pain, I was resorting to sleeping in my lift chair. I just recently purchased an adjustable TempurPedic bed with massage. I’m in heaven! If I can sleep related to the weather, I sleep so much better, and longer. I can get out of bed, standup and walk without the difficulties I was experiencing before. And it is better quality of sleep. I highly recommend finding a bed that meets the persons needs physically, to achieve that elusive thing called SLEEP!

Sleep, as monitored through an EEG recording revealed a marked loss of deep sleep sleep in my own case of M.E. Consistent with this finding was that of very low levels of growth hormone for my age, all since developing M.E. following a viral infection. As sedating antidepressant drugs and/or hypnotic drugs fail to restore the correct sleep pattern, they only have a transient benefit until the maximum dose is reached, and the insomnia returns.

There is now research pointing towards the use of drugs associated with Narcolepsy, namely Xyrem for deep sleep, and modafinil to remove the classic daytime sleepiness that is so common with M.E./C.F.S.

Until I started using Xyrem, 4 years ago, I could not stay asleep. I was always exhausted, had brain fog, and had given up reading, driving, living a normal life.

Once I started to get deep, restorative, Stage 4 sleep, and with the help of my vpap machine, I can exercise, drive myself, and be active again and responsible for myself again. This is all due to the off-label use of Xyrem, (sodium oxybate). I just wish all fibros could try this regime. I go to bed at ll every night and wake up when the meds wear off, between 1-3am, and then with the second dose, I sleep till 6:30 or 7:30 a,m. It’s been a life saver for me, honestly.

I don’t notice side effects, it doesn’t taste or smell bad, as some have written, and I’m not in danger of date-rape. Since I’m sleeping in my family home with husband, daughter, and dogs.

I’m a 61 year old man, who’s had CFS symptoms since I was 51. Before that, I was a very fit, very healthy eating, young-for-my-age person, who worked out regularly.

I’ve slept better since starting the (old-school) tricyclic, Desipramine about 4 years ago. I’ve had CFS since 2001.

Desipramine (300mg daily) is the only thing I can say has had a noticeable positive effect and after about 2 years it felt more like “health” rather than “drugs to mask a symptom”.

I know I can’t extrapolate out to other sufferers, but desipramine was a surprise find after years of taking every antidepressent under the sun, as well as nearly every other strategy and tests by specialists and family physicians.

Sleep was work, before the desipramine. My classic pattern was:
4 hours sleep – wake- 2 hours sleep – wake – 1/2 hour + 1/2 hour+ 1/2 hour, until I tired of trying and finally dragged myself out of bed.

I got my 7-8 hours, but it took 10 hours of work. Bedtime became unpleasant drudgery, which probably didn’t help the situation.

I rarely sleep unless I take Ambien. Then I can maybe get 4-5 hours. If I don’t take anything I can be up for a couple of days at a time and end up being a zombie. The worst part is the lack of sleep makes the pain worse and the worse I hurt, the harder it is to sleep.
I’ve come to realize that the depression & insomnia I was diagnosed with nearly 20 years ago was most likely the fibro this whole time. I finally saw a specialist about 5 years ago. Both my mother & sister also have it.

Although I fall asleep easily, either a bad night sweat or bladder wakes me up every 2 hours. Rarely do I sleep through the nite. If I get 10 hourws in a day it is becuase I nap (I can nap in my office, thank God!)

What I’ve found that works is a combination of magnesium (600-1000 mg), 5-HTP (50-100 mg) and Calm’s Forte (1-3 tablets). I vary the dose by how “wound up” I feel towards bedtime. Occasionally (as I’ve had in this past week) if I have large cortisol surges due to stress, even these remedies don’t seem to help. I then just endure, and then attempt to recover as I have this weekend. DLPA (DL-Phenylalanine) is another amino acid that I have begun to see if it can help with some of the pain.