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Adrienne Dellwo

The Torture of Sleep Deprivation in Fibromyalgia & Chronic Fatigue Syndrome

By June 27, 2012

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As I sit here awake at far-too-early o'clock, after getting to sleep at far-too-late o'clock, I can't help but fixate on sleep. I suppose it's more accurate to say "sleep deprivation" than "sleep," however.

When you have fibromyalgia and chronic fatigue syndrome, sleep deprivation is a part of life. Paradoxically, we're sleep deprived no matter how much time we actually spend asleep. More on this in a minute.

We're so accustomed to being exhausted that it seems normal much of the time - until we have a particularly bad bout of it like I'm having this morning. Here's something to put it in perspective for you: sleep deprivation is a torture device. It's used to break prisoners of war and to coerce confessions from criminal suspects. It can make a tough man break down and cry. And do you know why? Because it gives them a taste of what we live with.

In studies, researchers have demonstrated that sleep deprivation can cause fibromyalgia symptoms in a healthy person. The brain fog, the heightened sensitivity to pain, etc. - they can all be induced by preventing quality sleep.

Quality sleep is the key here, as I meander back to my earlier point. Our sleep - be it scant or plentiful - is not of sufficient quality to leave us refreshed or help our bodies recover from the previous day's exertions. This is the case with us: whether or not we have defined sleep disorders, we have what is called "unrefreshing sleep."

You can learn more about unrefreshing sleep here:

I came across some interesting (and frustrating) disparities while researching these articles. First, we have more research on improving sleep in fibromyalgia than on understanding the nature of the problem - largely because of pharmaceutical companies wanting to make claims about their drugs. Second, the reverse is true of chronic fatigue syndrome, where far more studies have been done on why sleep is so poor, but there's a distinct lack of research on how to improve it.

How is your sleep quality? Have you found anything that helps? How big an impact does a rough night have on your symptoms? Leave your comments below!

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Comments
June 27, 2012 at 10:57 am
(1) Brett says:

I wonder whether food allergies causing melatonin absorption problems could be a problem for some. Melatonin is ruthless on my digestive tract, and when looking for natural alternatives, I found cherries were high in melatonin (also bananas I guess), and taking a nice handful of dried cherries before I went to bad had the same nice refreshing effect. And I think I mentioned this here before, but melatonin interestingly causes me to ready to get up in the morning, not replacing hours of sleep, but I actually crave sunlight in the morning when taking melatonin despite being a strong night person.

June 27, 2012 at 2:28 pm
(2) sharon says:

I can count on one hand the number of times in the last four years I have slept through the whole night and woke up rested–3 times and it was wonderful.

Most of the time, with the use of sleep meds, I can get to sleep and stay asleep for 4-6 hours. Although I sleep I never wake rested, just functional.

Sometimes nothing works and I toss and turn all night, the next day is misery, I am dizzy, achy, tired, have fibro fog–yes it is torture.

Sharon

June 27, 2012 at 3:39 pm
(3) Fibrogirl says:

I can sleep 12 hours straight, or be up all night and I feel horrible no matter what. The pain is worse the less sleep amount I get. When it hits 1AM my hands and feet start to ache worse as time awake passes. I have never had a restful nights’s sleep in 21 years! I’m a single mom and there is things I HAVE to do… Exhausted and hurting the whole time. I wish more research would be done to find out why we can’t sleep properly. I have Fibro and CFS. I’m happy to see more articles on these important issues… Thanx!!

June 27, 2012 at 9:05 pm
(4) Abot Bensussen says:

That is why I tell people who suffer with fibromyalgia to have a sleep specialist, a sleep study, and hopefully, sleep medicine. I’ve been taking Xyrem, (sodium oxybate) for six years and it enables me to have the deep, stage 3 & 4 sleep that I cannot get on my own.

With good sleep I was able to get out of bed, take exercise classes, go back to college, and have a little life with few pain meds. In contrast, without Xyrem, I was bedridden and heavily medicated for pain. No quality of life at all.

Finally, sleep is being earmarked as the important deficiency in our illness. Anyone without good sleep would have the same pain and fog that we experience. It’s no secret. The big secret is why the FDA did not give permission to Xyrem as a medicine for fibromyalgia, only for narcolepsy.

June 27, 2012 at 9:06 pm
(5) Abot Bensussen says:

That is why I tell people who suffer with fibromyalgia to have a sleep specialist, a sleep study, and hopefully, sleep medicine. I’ve been taking Xyrem, (sodium oxybate) for six years and it enables me to have the deep, stage 3 & 4 sleep that I cannot get on my own.

With good sleep I was able to get out of bed, take exercise classes, go back to college, and have a little life with few pain meds. In contrast, without Xyrem, I was bedridden and heavily medicated for pain. No quality of life at all.

Finally, sleep is being earmarked as the important deficiency in our illness. Anyone without good sleep would have the same pain and fog that we experience. It’s no secret. The big secret is why the FDA did not give permission to Xyrem as a medicine for fibromyalgia, only for narcolepsy.

June 27, 2012 at 9:12 pm
(6) Abot Bensussen says:

Without deep and restorative sleep, everyone would share our symptoms of fibromyalgia. All over pain and mental fog. Our bodies use the deep stages 3 & 4, to repair our bodies and organize our minds. My sleep specialist, after a few sleep studies, has been treating me with Xyrem, (sodium oxybate) for six years. With good sleep I’ve gone back to college, take yoga and Pilates, enjoy a good quality of life.

This is why I always suggerst to people that they get sleep studies and a sleep specialist. Mine is a psychiatrist. I saw how my Dad suffered with his insomnia, his pain, he lived on Percocets and I use oxycontin. If only there had been Xyrem for my father. The only question is why the FDA does not approve of it for fibromyalgia but does for narcolepsy.

June 28, 2012 at 2:22 am
(7) Alisrair says:

Its 4PM. I have just woken up. My body is screaming in pain because the last 3 hours of sleep were to hot. Last night I had an Insomnia night, zero sleep falling asleep at 6AM because the afternoon before I took my boys to their Athletics training an watched and must have been too stimulated . This happens about once a week now. Lying in bed head on pillow rain racing at 100 miles per hour with a new taught every 5 seconds while trying to practice good sleep hygiene a seeking to focus on peaceful slow relaxing “happy place” images that an induce sleep. It didn’t happen last night. Insomnia used to happen every night day for 7 years of my ME/CFS and Fibromialgia in a cycle of 36 hours awake 10 hours sleep – not family friendly. Yes I’ve had sleep studies done. They showed Zero REM sleep at night and REM sleep within 5 minutes in the day. Yes they did scans and found damage to my Pineal gland which produces Melatonin , IL-6 and TNF-a which are all sleep inducing hormones so we can assume their levels are damaged and tests confirmed that. Yes I tried all the sleeping tablets, all wit more side effects than they are worth. I normally get 10 to 12 hours sleep per sleep cycle I normally go to bed @ 10PM to 12 Midnight but you can tell within 1 hour if sleep is a possibility or not. One thing I have learned is that Melatonin is a sleep accumulator not a sleeping tablet. Melatonin accumulates the desire for sleep slowly and steadily from the moment you take it. It normally takes 10 hours to accumulate enough desire for sleep to be in a sleep window where sleep can be triggered. Yes, sleep deprivation is a torture device. 6mg of hypoallergenic Melatonin should be taken the moment yo wake not at 9 or 10 PM.

June 28, 2012 at 4:56 am
(8) Ian Davies says:

My Fibromyalgia is I believe triggered by my Saco-illiac joint dysfunction, it causes constant pain and when aggravated symptoms get worse. If I’ve overdone things and not slept well I end up with pain points all over, I’m convinced that treating the joint would help but the NHS have said the delay in treating me means it won’t get better. The problem that I see is so many things can disturb sleep and trigger Fibromyalgia that it causes confusion for medical professionals, people think there must be a single cause when Fibromyalgia can be caused by a wide variety of conditions. Doctors need to identify the cause and deal with it as soon as possible, it can be difficult for some to accept that one painful joint can cause pain all over the body. Failure to treat leads to treating to fail, unfortunately the media blame the patient in most cases. I’d suggest that anyone who disputes the effects of the condition tries living with disturbed sleep for a few weeks at least, there is a good book called SLEEP THIEVES that documents the effects of poor sleep patterns. Chernobyl was caused by mistakes made when operators were tired, Three Mile Island had similar incident but were lucky that a shift change occurred and employees starting their shift reversed the mistakes made by tired workers.

June 28, 2012 at 12:57 pm
(9) NoLife says:

I’ve been dealing with both CFS & Fibro for more than 40 yrs. Obviously, as I get older it’s only getting more difficult. I cannot work outside the home and many days pass before I even venture out on my porch.

I’m still learning as I go, what works for me and what doesn’t. Very mild excercise 2 or 3 times a week helps. A healthful diet helps – even though it is more work than fast food, and it keeps my weight down, which also helps the pain.

Regarding sleep: The worse my night’s sleep, the worse the pain – which in turn makes the next night even worse, resulting in an endless cycle of sleep deprivation & more pain and flu-like symptoms. The key is to break the cycle. I don’t take pain meds during the day unless absolutely necessary. I want them to work at night when I really need them. Besides, pain is somewhat less as long as I’m moving – something I do during the day, but don’t want to be doing all night.

I do take Tramadol (50 mg.) – one in the morning and one at night. I would rather take ONE Tramadol pill, than take four Aspirin or Ibuprofen or Naproxen, etc. With Tramadol, I can stay in bed for 6 or 7 hours before the pain becomes too much. Without it, 2 or 3 hours was the best I could do. I stay in bed until I can’t stand it, then I stay up until I can’t stand it.

I also found it helpful to get up early, be up for 2 or 3 hours and then go back to bed for 2 or 3 hours – thus breaking up the night’s sleep for a total of better quality sleep. My day starts after noon.

I only have 3 or 4 hours of peak activity before crashing and I want to make the best of it, so when I get up for good I take about 10 mg. Adderall and 100 mg. Provigil. It does make a difference. My awake time is better spent. I get more done before my time is up.

I hope this is helpful to someone.

June 28, 2012 at 2:25 pm
(10) Tracy says:

Ive had fibromyalgia for 4 years, eventually getting so I’ll I asked my employment for support and got thanked with being made redundant. The hardest thing to deal with was the sleep deprecation. I have 4 kids and a busy life but even at the end of a day I was physically tired but brain was still working overtime. I spent a fortune on self help c.d’s and yoga. Videos also investing in natural sleeping aids like hypnosis and gym. Nothing helped. I’m a nurse so I knew what drs gave for sleep disturbances. I asked for some zopiclone to assist my sleep but doctors only gave me 2 weeks occasionally……. Just rubbish and no help. I eventually found a website that sold this medication abroad and have had amazing sleep for several months now. Yes, it’s not cheep but I’ve been able to reduce my pain relief for I’m having a good 8 hours straight sleep.

June 29, 2012 at 4:06 pm
(11) Annette says:

After reading Why Am I So Tired? (I forget the author), I started taking zinc. I paid maybe three dollars for the bottle. I don’t remember how many I took, but I DO remember that was the first night in years that I woke up refreshed. It was also the first time since my syndrome started that I remember actually dreaming, something I hadn’t even realized was missing. It was not long after that, that the good days were more frequent than the bad ones. I still would get a little tired sometimes, but only upon real illness or exertion, or taking something that had any copper in it. I’ve had this since Fall 2003. I’ve been doing better for years now, but still sometimes have trouble. I was on three medications, now I’m down to one. Everything is better. I still sometimes wake up too early or have trouble sleeping, but the repercussions are not nearly as bad as they’d been. I daresay I feel like myself once again. Sleep is a big chunk of this puzzle.

June 29, 2012 at 4:55 pm
(12) Kelly says:

I have sleep apnea as well as fibromyalgia. I use a CPAP machine and am on multiple drugs, but I still only sleep up to 5hrs straight. I routinely feel sluggish and as if I could sleep hours more when its time to get up. My sensitivity to stimuli shoots up and my fibro-fog makes me a hot mess.

June 29, 2012 at 5:07 pm
(13) barb says:

there is no rhyme or reason to my sleep “pattern”. there just isn’t. the only thing i recognize is that if i work hard during a particularly ‘better’ day, and push through the wall, then the adrenaline kicks in and i can’t sleep no matter how many drugs i take or not. ironically, somtimes some nights when i can’t sleep, if i eat a bowl of cereal i am out in 15 minutes, and sleep. i have no idea what in cheerios makes this happen, but it does. also, i sleep 12-14 hours a day, but i have dogs so when i get up to use the bathroom i go down and feed them and let them out and we go back up to sleep more, so that 12-14 hours is not continuous unless i put the dogs in the kennel for a night or two and then i notice a difference in my rest. so weird. i just hate this disease.

June 29, 2012 at 6:22 pm
(14) Barb5ash says:

yes, After years of doing nothing but sleep, my CFS improved and I had trouble sleeping at night, and after years of IBS and loss of weight, now controlled, I started to gain weight. On google, I fell across Wong who writes on sleeplessness and weight gain for people with FMS, he recommends Tryptophan, and started it and it worked straight away and controlled my l appetite and help me sleep.

June 29, 2012 at 7:22 pm
(15) Cindy says:

Just reading all the different comments makes me believe people have differing illness. One thing does not work for all people. I have had sleep problems since I was 19, I’m now 54. I use anything any time any where to get sleep. I don’t care what I have to take to get sleep. Without sleep I’m a crazy person, I can’t deal with anything. I take a whole list of things to sleep and sleep about 8 hours a night. And feel like hell when I wake up.

June 29, 2012 at 7:32 pm
(16) Gina says:

I have been suffering with fibro for over a decade now. I am a single mum and the people around me have no idea of what I go through. My sister who should be the most sympathetic, as she has MS, is the least! When I complain of my symptoms of pain and brain fog, her reply is ‘but I have MS!” So, it would seem, that our symptoms may even be more debilitating than someone suffering from MS!!!
I have searched high and low and spent a fortune on natural treatments as I am unable to take medication, especially antidepressants. I have tried soooo many antidepressants over the years but they all make me so ill, no matter what the dose or how long I take them for.
then recently I felt that overall, my pain was not as severe as it had been in the past but I was feeling more sad and depressed than anything else. I was unable to sleep for more that two hours at a time and was waking up in a fog and unable to do much during the day. I then decided to go to the doctor because I was feeling so low. I had no idea why because no medication I have tried in the past worked. My usual doctor was not available so I saw a new one. She recommended I try an antidepressant! I thought ‘here we go again!!!!” But for some reason I agreed to take Cipramil. It worked!!!!!! I can sleep without waking and feel refreshed in the morning. I only take a quarter of the 20 mg tab. as I am so sensitive. Lat night I took half as the effect had stated to wear off after a week on the low dose. I feel great this morning. During the last week, I feel like I have hope again. Hope to travel….. and do some of the normal stuff I used to take for granted. (Cipramol tab. 20ml – citalopram hydrobromide).
This has lead me to think that perhaps, fibromyalgia is a mental health disease cause by exposure to stressful situations over a long period of time which ends up causing physical symptoms????

Gina

June 29, 2012 at 7:42 pm
(17) Melanie says:

My belief around antidepressants is that they don’t work for most of us because there’s nothing to fix in that department. If a non-diabetic is prescribed insulin, is it going to improve their health?! Geez.

June 29, 2012 at 7:43 pm
(18) MelanieShareM says:

I haven’t used marijuana for pain relief, but I have used it for “sleep relief”.

I’m Canadian, 43 year old female, diagnosed with FMS 4 years ago. I work full time, take pain meds that area godsend.
I’m appalled a study like this one would even be in a reputable publication. There is so much information missing from the survey. Are these people diagnosed by qualified professionals? what do they mean by “current unstable mental illness”? I don’t know about other FMS sufferers, but when I’m on day three of a nasty flare, I’m pretty sure I’d fail any test measuring my sanity.
It’s frustrating that surveys like this are taken so seriously. It comes down to what the doctor believes. If he believes FMS sufferers are people with drug-seeking behavior, then, that’s what you are. And,hey, check it out! There’s a recent survey that backs his opinion!
I hate this disease/syndrome/whatever professionals decide to call it. 5 years ago I was a fun-loving, hard-working,life-loving woman with unlimited opportunities. Within 6 months, I was on disability (I was a welder), being “re-trained” to re-join the workforce.
Doctors kept prescribing me antidepressants. I couldn’t tolerate them; weird thoughts, uncomfortable side effects. I told my doc, and I’m labelled as non-compliant. Which is almost as bad a label as “drug-seekin”.
My point is, why do surveys like this “tokers are mentally unstable, lazy, drug-seekers” get so much more attention than clinical trials with a more sympathetic conclusion? I think it is because deep down, that’s what most people in the medical community think of us.

And it p!!!!es me off!

June 29, 2012 at 9:29 pm
(19) Judes says:

Sleep deprivation. Oh how! I have had this problem since I was a child. In my twenties I developed restless leg like my aunt and mom. in my thirties they kept saying take vicodin and nothing can be done about your back hurting. I was sent by Kaiser to a physciatrist. (misspeeled but I am exhausted). During physical therapy I had different places that hurt each week. I was told I was suffering post traumatic syndrome…Yes I can see that from my childhood..so I took it as Gospel. In my 40′ I developed chronic tendonitis in both arms… Lack of sleep all thru this. Finally I could not focus well anymore and after 9 years I lost my job. This lead me to lose my house and for my banking employer to sue me for my second mtg they knew I couldn’t pay. Yeah no sleep. I finally found a doctor who sent my butt for a sleep study. Only stopped breathing 25 times in 5 point something or other hours. But I am not sleep deprived. Wow. I still think it is my bladder being small. Doctors won’t hear me because they know everything. Still no one can fix me. Nightmares from the drugs to help the pain… Yeah I wake up from those too. Sleep deprivation has done me in. My body has just followed and finally doctors understand something is wrong with pain receptors. Yet still I encounter Doctors who feel it is a faked disease. Trust me if I could work I would. I miss people and talking and an occasional night of sleep. No sleep anymore. *sigh*

June 29, 2012 at 10:57 pm
(20) codegirl says:

I have CFS and have unrefreshing sleep (after having a sleep study, I was told that my sleep stages/patterns were abnormal, but that I didn’t have a sleep disorder). Ambien doesn’t do anything for me sleep quality-wise, but Requip (for Parkinson’s and RLS) in combination for a muscle relaxant help. Unmedicated, I can sleep for 12-13 hours and still feel like I need to sleep the rest of the day.

June 30, 2012 at 1:46 am
(21) Andrew Porter says:

One EEG recording showed that when asleep, I do not enter deep sleep, as demonstrated through a lack of delta wave activity. As very few sleep medications induce deep sleep is why, even when they do work, the sleep pattern is not corrected, and I still fail to wake up feel refreshed. However, when given a general anaesthetic, I recover feeling significantly better and, although not viable or possible, I would love to have a general anaesthetic every night. However, Xyrem, also Sodium Oxybate targets the same part of the brain as a general anaesthetic, therefore, unlike other sleep medication, it does induce deep sleep and is does stimulate the release of growth hormone. This is why an EEG is so useful, as it shows exactly what is wrong with the sleep pattern, so that the treatment target can then be optimised.

June 30, 2012 at 9:58 am
(22) Rachael says:

Histamine is a hormone and neurotransmitter that plays an important role outside the nervous system, being that it produces inflammation in the body. It’s role in the nervous system is also to keep us awake and aroused. Blocking one of the receptor sites for histamine H1, by using antihistamines alleviates allergies causes sleepiness and drowsiness. That’s why antidepressants like amitriptyline (which has antihismanic properties) works for many who have problems shutting down (insomnia). It works because it blocks histamine H1 receptors, as do other antihistamines.

http://www.ncbi.nlm.nih.gov/pubmed/39202

June 30, 2012 at 11:03 am
(23) Edana says:

I woke one morning a couple of years go with new unidentifiable symptoms. It scared me to death. When I finally got awake enough to take inventory, I felt good, I actually did not recognize how it felt to wake refreshed and ready to go! That has happened exactly one time in 12 years. I hate to have to perceive myself as lazy and have to work at reminding myself that I am actually ill. I seem to be sleepy all the time, but no matter how much I rest, I am not able to sleep for more than a couple of hours at a time. I an exercise intolerant, so working out or even a walk is out of the question. Right now I am on bed rest so it is more or less a mute point. I have a power chair, but those evenings when I can leave it am able to make myself a warm non-alcoholic drink, slip into the shower, then immediately into bed gives me the best chance for a 4-6 hour sleep as opposed to the normal 1-3 hours I sleep before I wake. Sleep tests show I get less than 3 hours of REM sleep. I have taken all the standard drugs such as Ambien, they do make me sleep, but I still manage only the 1-3 hours of REM sleep.

June 30, 2012 at 4:35 pm
(24) Lee Ann says:

I have narcolepsy too and also take Xyrem. it really helps with the fibro too. I found out during my sleep study that I wake up an average of 16 times an hour. I was just too exhausted to know it. I started xyrem at the lowest dose, and the next morning, I hopped out of bed and didn’t nap or feel tired at all. They are now researching whether Xyrem will help people with fibro, since narcolepsy and fibromyalgia are two sides to the same coin. The receptors that are damaged in narcolepsy are right next to the receptors for pain.
I also take magnesium and I think it helps me too.

July 1, 2012 at 9:40 pm
(25) A says:

I have had insomnia for 20 years, and the last 7 years, chronic. It has been at least 5 years since I could go to sleep w/out medications. literally cannot “fall” asleep – could go 2, 3 days (haven’t tested it beyond that) w/out falling sleep. The primary neuro chemical chain reaction in the brain that occurs at sleep is faulty – one theory is that primary sleep signals originate from the PONS – an area of the brain stem that regulates autonomic funtions in the body. This signals the hypothalamus to start production of melatonin and other sleep chemicals to shut down the body. After several years of every medical test known to man, recently a neuro diagnosed a small non growing benign mass in my brain stem. I was almost in tears, when this doctor agreed that this could possibly be a cause of the problem – after years of doctors going in the wrong direction with this, just relieved to have some idea. I can take Lunesta and get stage 1,2 and REM sleep – but no delta/deep sleep/stage 3 restorative sleep (most people think REM is the deep sleep – on contrary it’s a very active time for the brain) .

cont…

July 1, 2012 at 9:41 pm
(26) A says:

Part II..

It’s almost like the starter in a car – am missing the key to start the ignition, and have to *hotwire* to bypass the system, which the Lunesta does – and hope it will continue to work so at least can get some kind of sleep. Long term use of meds will also knock out your deep sleep, so it’s a catch-22. Have short term memory loss, perpetual fatigue (always tired, but never sleepy) – and starting to grow tumors in wierd places, hair loss, heart issues, iflammation, joint issues, the list is endless when the brain/body can’t repair itself correctly for lng periods of time. My immune system is shot. Traditional antidepressants don’t work for me. I take Ultram (brand only – much different that generic for some reason) and mega vitamin B every 4 hours to combat depression, anxiety and fatigue and on some good days can function at maybe 25-50% copacity. I have had to go on disability – it took several years, and even then the lawyer suggested I had to downplay the sleep disorder and play up the depression anxiety part – because many people still believe all insomnia issues are psychologically based , and therefore don’t take sleep depriviation as a true disability, but all of us here know different- and even as many studies are showing brain lesions, masses, and brain damage can possibly be causing the disorder.

Have been on Xyrem – can fall asleep for an hour or two, before taking another dose – caused worse memory loss and lethargy for me. Also extremely expensive. And scary to be on a drug that literally feels like it paralyzes your body – am glad it helps some narcoleptics, but it wasn’t an answer for me – I can see why the FDA doesn’t want to approve it – many more people have fibro than narcalepsy – more room for mis use, as you have to be very careful on it.

ANyways could go on and on about sleep issues. Thank you for a great newsletter here.

July 2, 2012 at 5:11 am
(27) Deb says:

I can’t remember the last time I slept more than four hours at a time. I usually wake up about every hour- if by some chance or a dose of Xanax I sleep more than that, I wake up with my ear killing me from laying on it for an extended period. I usually spend the night flipping around from side to side and from one end of the bed to the other like a roast on a spit. Like my ear, whatever I lay on too long, a leg or hip or arm, kills me when I wake up. Remember the Princess and the Pea? She had fibromyalgia. I just know it.
I’m in a period of such constant terrible pain right now, the worst for a very long time. Nothing helps, and I’m sick of hearing myself say how bad I hurt. The best position I can get in is bending over and pulling weeds or planting seeds, but then my butt and hip and leg cramps up after awhile and I’m stuck in the sweltering heat unable to walk. What a sucky illness. What sucky doctors who couldn’t care less because they can’t see it on a test or an xray, and also, I think, because it’s mostly women who have it. Somebody mentioned being on disability because of the fibro. How difficult was that? It’s hard enough to get SS, but with this, I can’t imagine how hard it must be.

July 4, 2012 at 11:59 am
(28) Rebecca says:

My doctor put me on clomazepan for what she thought might be restless leg syndrome -on top of all my other health stuff. (Clomazepan has some scary side effects which I fortunately haven’t experienced.) I thought that maybe my doctor was just throwing random drugs at me. But being able to get to sleep quickly, sleep soundly, and often sleep through the whole night has maybe doubled or tripled my level of activity for the day. I just got back from a long weekend trip and I was pretty much able to keep up with the rest of the group. A first for a long time!

July 5, 2012 at 2:02 am
(29) Pamela in Calgary, AB says:

I have been living with FM/CFS for over 35 years now and I can’t remember ever having a “good night’s sleep”. I generally wake up throughout the night, 3-4 times on average. I know that I have sleep apnea and I’m on a very long wait list for the Sleep Disorder Clinic in my hometown of Calgary, AB

In the meantime, I go to bed (way too late), fall asleep (after a long wait), wake up over and over and then get out of bed in the morning feeling more exhausted than when I went to sleep in the first place. And yes…I repeat this pattern, day in and day out.

I have been told to keep a sleep diary – it’s to help me see when/where I am able to sleep and to help me find ways to make falling asleep more natural. I love all the ideas and suggestions here and I’m eager to discuss the sleep drugs with my doctor. Thanks everyone!!

Pamela

July 6, 2012 at 5:01 pm
(30) StillStanding28 says:

I was just recently finally diagnosed with Fibro -it only took 5 years! This is the first time I have ever joined a forum and I am hoping that maybe my comments might help someone.
I have Idiopathic Hypersomnia -”idiopathic” meaning doctors don’t know what causes it & “hypersomnia” -I have a difficult time staying awake. Whenever I tell someone, even sometimes doctors not really anyone is familiar with it. It really encompasses the main symptom of narcolepsy – but is NOT narcolepsy. I have Excessive Daytime Sleepiness which can be part of Id Hyp (at least the kind I have). I have sleep attacks, where after about 3-4 hours of activity I suddenly feel really drowsy. I never fell asleep while driving or anything, but if I stopped at a light I would feel like “I need to go home and lay down now.”
I had multiple sleep studies after I had a bad reaction to ambien, melatonin did nothing, had carpal tunnel surgery in both hands, saw a urologist for going to the bathroom too much…lots of trial and error. Then the sleep study showed that I had Restless Leg Syndrome, but still not fixed. Well, with no sleep now going on at least 2 years and a newborn, I began to gain weight, so now they thought I had sleep apnea, so more sleep studies, maybe a little sleep apnea (probably due due to weight gain, really?). I had a great sleep specialist towards the end, but then I moved and kind of had to start all over with sleep studies. I spent 9 months with a CPAP machine and multiple masks to help w/the sleep apnea. The CPAP never helped…it probably woke me up more.
Then I finally had a daytime sleep study idiopathic hypersomnia. I am still trying to get it under control, not sure if I ever fully will- I take addoral which helps a ton. I just knew that there was something really OFF..I was soooo tired no matter what. So keep pushing if you are not finding relief. Just b/c you might be overweight does not mean the answer has to be sleep apnea. Hope this helps someone.

July 6, 2012 at 6:00 pm
(31) chris says:

Sleep disorders are a huge factor that must also be studied in those of us that have fibromyalgia. When I sleep fairly well, I do feel less pain the next day. However, I sleep fairly well only when I take a sleeping pill. I am using 1/4 of a 5mg tab of zopiclone. It allows me 2 hour periods of sleep until I finally have to get up at 5.30 am. I occasionally increase the dosage just because I think I will go insane if I don’t get more sleep. The pain is particularly severe in my hips and back right now and that make it difficult to find a comfortable place. No one listens to what I have to say any more, actually I have stopped talking about it. No one seems to care. I can’t take ANY pain medication because they all increase my pain. I have noted some moderate success since going on a gluten-free, sugar free diet. The depression and the panic are my daily companions. I have certainly tried anti-depressants but had so many side effects that I really just couldn’t tolerate them. Anyone trying to lose a bit of weight might try the diet. I have lost weight myself although I didn’t need to but it’s difficult finding the right foods to eat. Massages help. I can’t afford any of these other treatments right now either. I wish I had some support at least. My best to everyone.

July 6, 2012 at 7:16 pm
(32) Autumn says:

I agree…sleep or lack is torture and used in war. Elavil and some of other drugs cause such weight gain..that makes you miserable, too. I take ambien …only sleep 2-4 hours if lucky, but I do welll and went to workout today. I am nearly 50 and took 4 years in 80′s to get a diagnosis. I could hardly walk. everything hurt. It took while for me to realize the sleep thing.
BTW, fibromyalgia is not a syndrome…a disease. Definition of syndrome is set of diseases processes. It blew me when I read this. Furious, that all have fought…too many with it and same symptoms..they just do not now cause…cancer is diease and they do not know why?Ugh! I wish everyone to find a dr that works with you and just keep plugging. I am getting Itchy so fixing to put muscle rub on.

July 7, 2012 at 1:27 am
(33) autumn raid says:

Do we ever get over the anger stage ? I grit my teeth , broke out one tooth already . My muscles I had as a body builder has turned to mush , I have no idea when my next attack will be , my house and garden has been ignored (yes I live alone) so it is all up to me .. And the worst is no one gets it .. Do they remember me when I worked like a dog , and that I used to laugh ?

July 7, 2012 at 3:26 am
(34) DENIAL says:

Did someone say sleep? It is 3:22am and I cannot fall asleep. I usually stay up until 5:00am to see the sun rise. I try and sleep a little but usually get 4 hours in a day.

I still can’t believe how my life has changed. I use to sleep, exercise, work hard, play hard, and now my body tells me what it is or isn’t going to do. I don’t have any support and my daughter doesn’t understand. She says mommy is tired so we can’t go outside to play … ;(

July 7, 2012 at 2:29 pm
(35) Lyncherry says:

Regarding sleep depravation, I was terrible last year and the year before, but now I have my pain more under control I am sleeping much better. Has this happened to anyone else. I am on tramadol, and pain medication patches, and paracetamol for break through pain. f am amazed with how much more energy I have now. So I trruly beleive it is the torment of pain which stops us getting a good nights sleep.

July 11, 2012 at 6:30 am
(36) kim says:

i find that taking 1 – 2 mg ativan helps me sleep well and i actually wake up refreshed in the morning and i dont notice any pain while im sleeping. unfortunately i can only take it for 2 – 3 days in a row or i end up with withdrawal symptoms.

July 14, 2012 at 1:21 am
(37) lynn weiss says:

With out Xyrem, I can not function at all. It is the only medication that has given me some refreshed quality of life at all. My GP., gave me a script for marijuana, and that was all he would prescribe. I hope in the near future we will have a clinic, with trained physicians in one facility.

July 21, 2012 at 1:39 am
(38) LifeIsSweet says:

I just read a post by someone who is taking Ativan every few days for sleep. I wish I could contact her directly and tell her to taper off the drug. To any of you with anxiety related insomnia, PLEASE do not take benzodiazepines. They are very addictive. Withdrawal is hell.

I have had idiopathic hypersomnia since 1994. I need 12 hours sleep in order to function. I wake up at noon. Even though I mourn the life I could have had if I were able to wake up early, have a clear mind, etc. etc., I do have the relative “luxury” of being able to get all the sleep my body requires. I feel nothing but compassion for those who require more sleep than they actually get – because they need to work full time jobs. If you think you have chronic fatigue and haven’t been able to sleep in because of family or other demands, try to sleep in one day and see how you feel. If you feel rested, you may have long sleeper syndrome – meaning you’re hard-wired to need a lot of sleep.

There is a lot of evidence that a gluten free diet helps with hypersomnia and fibromyalgia. I’m transitioning to that now. Also, check your thyroid. Armour helps increase slow wave sleep in people with hypothyroid. I could write about this stuff forever.

Sweet Dreams.

August 17, 2012 at 1:48 pm
(39) payday loan says:

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August 19, 2012 at 4:56 pm
(40) payday uk says:

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August 27, 2012 at 12:51 pm
(41) KERRY HARRISON says:

This abstract suggests this is arguably a very subjective concept. The definition of torture, as opposed to cruel, inhuman or degrading treatment, is not very clear and a constant issue of debate. This confusion has led some authorities and individuals to deny the very existence of “psychological torture” as a separate entity, especially in the cases of fibromyalgia and chronic fatigue syndrome sufferers who are being sleep deprived while the illness is being investigated.

Imagine while a sleep you hear “sounds and some one say when you hear him I want to say, bla bla bla, or I want you now to count back from 5 -1 and when awake I want you to repeat what was said..” methods used during interrogations – in this case of a fibromyalgia and chronic fatigue syndrome sufferer, coercive tactics indeed qualify as constituting “psychological torture”.
“It is clear that Big Brother tactics are not just in the streets but under the pillow too”.

August 28, 2012 at 5:20 pm
(42) Amanda says:

Bless everyone for their strength. Please google Dr. Rodger Murphree about Fibro and sleep problems. He is the only one who gets what the problem is. Also try5 to 10 mg of flexeril and 6 to 9 mg of melatonin everynite at bedtime with grape juice. Vitamins everyday religiously and you minerals especially magnesium(for muscle pain n constipation)
Your life will change. I promise mine did! I’m at least 80% better.
I’m only on 1 rx. Flexeril. $4 at walmart.

September 3, 2012 at 3:48 am
(43) Nicole Saint says:

Using a dehumidifier along with a small turbo fan (during all seasons) in my bedroom has done wonders for me. My sleep is consistently very deep and refreshing now. And at 51 years old, I don’t feel any aches and pains, and my body now has the energy, agility, and stamina of a very healthy 15 year old. The most amazing thing is that I work on the overnight shift, and am able to get this result even though I have to sleep during the daytime.

Recently I spent the weekend at a relative’s house on the coast where the air is always much more humid than it is inland. Although there was an air conditioner and a fan, I didn’t have my dehumidifier with me. My sleep was so shallow, I wasn’t even sure if I had actually fallen asleep. So, of course the pain and fatigue came right back. Once I was back home with my dehumidifier, my sleep became deeper again, and when I woke up the pain was gone.

I know when I retire some day, I’m going to need to move to a place like Reno, NV where the air is extremely dry. I don’t think it’ll be easy to empty out the dehumidifier twice a day when I’m eighty years old.

December 5, 2012 at 4:38 pm
(44) Diana says:

I have had Fibro and CFS for 18 years, but wasn’t diagnosed until 4 years ago. I have had only one night of refreshing sleep that I can ever remember. Daytime sleepiness is terrible for me. I never want to go to bed as I get a second wind late in the evening, no matter how tired I am. Then I have to get up early for work (full time), and then I ‘m tired all day. I’ve been on clonazapam for RLS but that left me sooooo sleepy in the am that I was late for work and was getting in trouble. I have had a sleep study done which shows I only get 0.5%of stage 3/4 (deep or delta wave) sleep as compared to the 20-30% you should be getting. And no wonder I’m exhausted and in pain!! I have used Flexaril but feel drowsy in the am. Tried Ambien but I didn’t feel any difference. I would like to try Zyrem, but I am afraid of the side effects. Now I ‘m having significant trouble with my memory!! I feel like I’m getting dementia at 48! When really it’s due to my poor quality of sleep. **I have had some improvement in my sleep and pain with a Calcium, Magnesium, Zinc supplement at bedtime. And seeing a Chiropractor that uses “Principle Chiropractic”, an approach that focuses on turning on your energy source and not just cracking your bones. With these two things, I am not in as much overall pain and not quite as tired. I hope this helps others.

December 20, 2012 at 2:19 am
(45) chrissy says:

I have fibro, mixed connective tissue disorder, raynauds for 12 years. I am on this crazy sleep pattern of like 24 up 12 sleep (I can only sleep with meds). If i dont take meds I cannot sleep at all because of the biting sensations in my legs . I try so hard to get into a schedule and I just cant do it. I am exhausted all the time. It is insanity . Thank god for disability because I just cannot function at all. I believe it affects my who life, my memory, the pain, the uproar in my life because I can never get anything done. My house needs cleaning and I just dont care. I wish i could go back 20 years when i felt good. Cuz I havent been without pain other when i take steroids for that whole time. :(

December 22, 2012 at 6:24 am
(46) Sheila says:

I am on my third day without sleep. I take Ambien, Neurontin for neuritis, and Ropinerole for Restless Leg Syndrome, all of which are supposed to make you sleep. I remember having some insomnia as a child of about 12. I also take Cymbalta for depression and fibromyalgia, and I am at my wits end. Doesn’t seem to be thyroid related, and I am so tired.

December 26, 2012 at 3:47 pm
(47) David M says:

I am a man and I live with CFS, Fibro, and now chronic pain issues. Several years ago I started not getting refreshing sleep and that lasted for some time (a couple years), then I started getting joint aches and pains and muscle pain, then finally CFS. I was checked for everything under the sun. The only thing they found was that I had a reduced volume of small nerve fibers diagnosed through a skin punch biopsy. They (the doctors) were puzzled because they could not find any inflammation causing the nerve problem. The neurologist said that these small nerve fibers are present all over including in the hypothalamus and other brain structures. I have theorized that this basically has thrown off my homeostasis and not allowed the body to get back into sync wtih sleep and other cycles. Prior to this I was very healthy and bicycled 10 miles a day and could bench press 250lbs…

Now for the crazy part…I poured over my medical history which was fairly small since I hardly ever saw a doctor prior to these problems. The only thing that kept surfacing was a large dose of Levaquin that my urologist gave me for a case of prostatitis. Researching this family of drugs I became very upset because of their ability to cause nerve problems. Recently I was at a CFS support group where about 23 people were present. Near the end I quickly polled the group and asked how many people where taking some sort of medication prior to the beginning of their symptoms. About 18 hands shot up. I asked each person what medication they were taking. Some could not remember but 12 stated they had taken an antibiotic from the fluoroquinolone family (Cipro, Avelox, Floxin, Levaquin, etc…). Coincidence? I think not.

Unfortunately even though I believe I have found what caused my CFS issues I still have found no successful trreatment. The sleep deprivation, non-restful sleep, are torture. They cause my pain issues to go through the roof.

January 17, 2013 at 6:13 pm
(48) joy jones says:

Hi. As I sit here writing this piece, my 12 year old (in January 2013) is starting his third night without sleep. He has CF, or as I now prefer to call it ME. He is not just tired he is really ill! His sleepless nights are increasing and as he goes without sleep so do I. His blank episodes are increasing and his patience is non-existent (as you would expect without sleep). Melatonin does not work. Pain killers do not work. Nothing works. I feel like I am losing my mind and I get more sleep than him. Will there never be an end to this horrendous illness which stops him from doing everything except surviving? I even question that.

January 18, 2013 at 5:51 am
(49) libraldy says:

So the past month I had widespread aches and pains. Its almost 3am and I can’t sleep. The doc is talking about the possibility of cfs of fms. Idk. Maybe I have both. They’re having me see a neurologist??

February 1, 2013 at 6:17 pm
(50) MK Gilbert says:

I had a sleep study several yrs ago and felt all they wanted to do was sell me a C-Pap machine~which gave my bronchitis and kept me awake fidgeting with it due to my super-sensitivities! The competing hospital wanted to do another one, but the Dr was so rude I cancelled~Can’t take any sleep aids, as most make me too groggy the next day. Even much melatonin seems to aggravate the depression. Some sleep herbs help, but it’s hard to know what to take…I need 10 hrs of sleep, but still feel tired, foggy, irritable most of the time.

February 1, 2013 at 6:37 pm
(51) MK Gilbert says:

I also can’t take anti-histamines as they make me agitated instead of sleepy. The last time I remember having a good night’s sleep was last year after having a total deep tissue massage which took 1 1/2 hrs by a lady who calls it NERVE THERAPY. Amazing! If only I could afford to go to her a couple times/week I’d feel so much better! The massage was quite painful at times (she says to take pain meds 1st, but I wanted to see what it was like!) I felt like a marshmellow afterwards! Totally relaxed, and had virtually NO PAIN for a couple days after! Like I said, AMAZING! She doesn’t advertise as she’s keeps so busy by word of mouth. This one is near the tiny town of Bruce, SD and there is another lady who does in nearby in Volga. This woman has a natural talent for it, I think, and also sells an expensive brand of supplements (USANA) which I tried once but can’t afford to keep on, as I can’t work much. She says they have helped her a lot. Keep on searching, even tho I know how exhausting it is, my fibro “fellows.” We each have different body chemistry, and there IS something that will help~there has to be! I’m planning to try a naturopath, but coming up with the $ is the biggest problem. Gentle exercise is also important, as is diet~but it’s so hard to make myself do it esp in the winter…I’m wondering if much of my problem is due to mercury poisoning which I was diagnosed with as an infant~it damages the CNS. Wish I could afford to get my amalgams removed like my sis is~she found a great bio-dentist in CO and their insurance pays 80%! We have none…

March 24, 2013 at 12:43 pm
(52) Isis says:

I have had post-viral chronic fatigue syndrome for almost two years now and reading this represents exactly how I feel on the lack of research and the lack of people understanding how serious chronic fatigue effects people.
I’m still in high school and I struggle every day waking up and even functioning at any point in the day, teachers and students alike can’t realise the reality of the situation.
And recently I’ve struggled sleeping every single night for weeks at a time, has anyone else experienced this? Has anyone got any tips?
I’m glad I found somewhere that understands the reality of this, thanks x

April 15, 2013 at 1:45 pm
(53) MJ says:

I’m a fibromyalgia patient who was recently given a recommendation for medical marijuana. I can say in all honesty after 6 months of treatment that using this to treat my sleeping difficulties has alleviated probably 80% of my symptoms. I only smoke at night, just before bed, and very small quantities (I use maybe 1/8th oz every 8 weeks).

I’m able to sleep easily, I get to sleep quickly and I sleep deeply. Because of the pain relief aspect and its enhancement of stage 4 sleep (http://www.ncbi.nlm.nih.gov/pubmed/178475) I wake feeling refreshed and not at all dopey.

I still do have morning stiffness, some random pain, nausea, etc and any kind of stress still sends me into a flare up, but it’s MUCH more controlled now. The constant feeling of flu-like symptoms, depression, exhaustion and severe pain are nearly gone most of the time. I’m convinced that getting the sleep cycle under control is of vital importance to the treatment and quality of life of fibromyalgia patients.

September 28, 2013 at 3:33 pm
(54) Lindsey Engelbert says:

I’m glad to have found your site. Fibromylgia never ceases to amaze me. Recently, I had a Migraine daily for six weeks. The latest deal now is that I have been developing severe flu-like symptoms throughout the day, but more bothersome in the evening. Luckily, Ibuprophen aleviates the pain for about four hours. This flu happened to me several months ago, and continued daily for six weeks. Don’t ask me where the six weeks keeps coming in.

This is something new, though. I always have had traveling pain, but a six-week time period is very mysterious. I also awaken in the morning literally soaked – - even my legs can be damp!

As everyone else has shared, sleep is a luxury and I grab it when I can. I turn my light off; and if I am still awake 30 minutes later, I watch music videos or Dr. Phil on my computer. Or. I practice my OCD and sit and trim the ends of my gray hair that look like steel wool. Yes, something definately has changed. Could it be that I have just entered my sixties?

If this is what happens upon entering my sixties, I am not looking forward to the seventies.

Love to all.

“SALVATION” DON’T LEAVE EARTH WITHOUT IT.

March 2, 2014 at 9:49 am
(55) john schoon says:

havent had good sleep since 2000.fms ,headaches.only sleep 1to 1/12 hrs at a time.sometimes go 24 hrs no sleep then only sleep about less than 2 hrs. got any ideas ?

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