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Old 02-25-2010, 05:21 AM   #16  
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Sleep disorders is one facet of fibro, then you have all the other symptoms, the constant pain in the joints, the foggy brain, the spasms in various body parts, the TMJ, depression and anxiety, and alot of other issues with it, and the cold affects me the worst, I was so much better with my fibro when I lived in Florida, I am moving back there, cause this cold weather makes it worse, I can barely get out of bed with my leg pains and back, and the new thing of being dizzy. I wish I could get rid of it, but I know part of it flaring up like it has, has been eating junk, so dieting and proper nutrition helps it alot. I don't sleep past 4 am, by that time I am so sore I need to get up and move.
and I

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Old 02-25-2010, 04:15 PM   #17  
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Well, I have to say, that when I don't sleep well, my FM flares, but I don't have a sleep disorder. Just at times, I am so groggy all day, and wake up at bedtime. It's like my inner clock is messed up. If I take an Ativan for a couple of nights, I get good sleep and then am ok again for awhile. I never had a problem sleeping until menopause, and then FM happened along (diagnosed that is - think I had it for years). I also have arthritis, and I was watching some new info. on the news one night, and it also causes poor sleep quality. I have been walking around in a daze the past couple of days, but today, especially this afternoon, it seems to be clearing.

I live in Western Canada, where we have a dry climate. I love the cold because I feel good. When it warms up and snows, or rains, pain everywhere. It is the humidity that does me in.

I don't believe that FM is a sleep disorder, by it is part of the syndrome, along with IBS, Restless legs, pain etc. It is quite the package!!!

I think if comes from the upper cervical. After going to an Upper Cervical Chiropractor, both the arthritis and the FM started to improve by leaps and bounds, so much so, that after 10 years of not being able to do much, I was able to finally get back to working casual. I can't work fulltime, as I won't push myself to do that. I am just thankful that I learned of this type of chiropractor. There are not that many of them. Some of you might of heard of a fellow in the USA that does an ATLAS treatment. He travels all over and I believe he charged $200.00 for a one time treatment. Learned of this on an FM board. People said it really helpted them. If you want to learn more about this type of treatment go to www.nucca.org . It is so worth it.
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Old 02-25-2010, 05:26 PM   #18  
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Well, I have to say, that when I don't sleep well, my FM flares, but I don't have a sleep disorder.
Unless you've had a sleep study, you could easily have an undiagnosed sleep disorder. Many sleep disorders are impossible to diagnose without a sleep study that includes an EEG (just testing for apnea, or for RLS isn't enough - you have to test for apnea, RLS/PLMD, and sleep stage disorders).

Sleep disorders are so common in fibromyalgia (up to 80%), most especially the alpha EEG anomoly, that more and more they're considered most likely a cause rather than a symptom (because if you artificially induce such a sleep disorder, you would get symptoms identical to fibromyalgia).

Before I had my first sleep study (before I was diagnosed with fibromyalgia, in the process of trying to find a diagnosis for my strange symptoms), I would have told you that I didn't have a sleep disorder either (at least until I was sleeping far more than normal). As it turns out I had several (and now have one less as the sleep apnea disappeared after I lost only about 35 lbs), and probably had most of them for years before I had any inclination that my sleep wasn't normal.

Lucid dreaming for example, I've had in some form for as long as I can remember. As a child I had no idea that my dreams were any different than anyone else's. In lucid dreaming a person is aware or at some point in the dream becomes aware that they are dreaming and can control, to some extent, the events of the dream - or may be able to choose to wake up. I was rarely afraid of nightmares as a child, because in the dream I would choose to alter the course of the dream when it got scary - or reassure myself in the dream that it wasn't really scary because it was a dream, and if all else failed I could choose to wake up.

Waking from a (seemingly) normal 7 to 10 hours of sleep, feeling less-than-refreshed was probably an early sign of one or more of the sleep disorders. That was a problem since high school (when fibro symptoms also started to appear, though I wouldn't have a fibro diagnosis for another 25 years). I always attributed the morning (and later constant) fatigue to my over achievement (I graduated high school and college early, and always took extra class loads and took as much work-study and paid work as I could (often swing shift work). After graduate school, I also usually worked two jobs, often swing-shift work, until the worsening fibro symptoms made that impossible).

Both a rheumatologist and a neurologist told me that my years of burning-the-candle-at-both-ends, may have triggered the sleep disorders/fibro - as they've also recently found a link between swing-shift and double-shift workers and fibromyalgia and sleep disorders.


Anyway the sleep disorders my sleep study found:


Sleep Apnea I wa having 90 episodes of apnea per hour. I was prescribed a CPAP machine, which greatly reduced the fatigue and even the severity and frequency of pain flares. The sleep apnea disappeared after I lost about 35 lbs. I no longer use a CPAP, although (now that my husband knows what apnea sounds like) I do periodically have flares of the sleep apnea if I have a severe respiratory infection (when I've had bronchitis or pneumonia).


Restless Leg Syndrome and Periodic Limb Movement Disorder, which is considered one diagnosis or two depending upon which doctor you talk to. PLMD is a more severe form of rls where the whole body, not just the legs are affected. Basically if I'm not taking my medication for it, my husband will wake up with bruises from my thrashing around. (Very common to fibromyalgia, but not nearly as much so as the alpha EEG anomoly).

Alpha EEG Anomaly Alpha EEG anomaly occurs when sudden bursts of brain activity occur during a time when the brain should be in deep sleep. This is the most common of sleep disorders in fibromyalgia (in most studies looking for it, it's been found in more than half - sometimes much more than half of fibro patients studied).

This can take two forms (again one diagnosis or two? I have both)

1. Brain waves associated with "awake states" intrude and interupt deep. My sleep study revealed that I spend nearly no time in deep, restorative sleep. I wake or return to shallow stages of sleep almost immediately upon entering REM (as a result, I spend nearly no time in deep restorative sleep).

2. Brain waves associated with "awake states" occur simultaneously during deep (REM) sleep. A person can seem to be both awake and asleep simultaneously

Two examples of what I believe to be manifestations of #2, which I experience frequently are sleep paralysis, and lucid dreaming (being aware that one is dreaming, during a dream, and being able to a degree to control the dream - one type that I have that is very unpleasant is knowing that I am dreaming, but being unable to wake up, sometimes dreaming that I am waking repeatedly only to find it yet another dream. I can panic in the dream, feeling I will not be able to awaken).

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Old 03-02-2010, 09:10 AM   #19  
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i have to agree that fibro and sleep disregulation go hand in hand. interestingly though, my pdoc told me that roughly 80% of ppl with bipolar also have fibro (i have both). i find that when my moods cycle, especially downwards, my pain levels rise and i have to be extra vigilant on having a regular bed time and rise time. i find that even if i can't sleep, the key is being in bed, taking some time to yourself before trying to sleep, and that it's more important to rise at the same time each morning then going to bed at the same time.
Just some things that have helped me over the last 12 years of pain-
Diet is *so* important. when i was properly diagnosed and being treated as an inpatient the hospital cafs at the time were abundant with unhealthy choices and i not only gained weight, but my pain levels got worse. i started reading about nutrition and quickly cut out things like junk food and soda. something important i read about diet was that if your ancestors would not have recognized it as food, you shouldn't be eating it. i find when i eat according to that philosophy i feel best.
also i'd recommend getting tested for food allergies. what might be a sensitivity to wheat or dairy can present itself in hightened pain levels, disturbed sleep and mood. this helped me tremendously.
it's *so* important to move. walking and yoga and stretching and light weight lifting are very important. i've had periods of time where i was bedridden or had to stay in a wheelchair and the hardest thing to do is get moving again.
and, of course, finding not only a good doctor, but one who BELIEVES you and listens to you.
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Old 05-30-2011, 07:10 PM   #20  
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Hi Linda!
I've been diagnosed with fibro for a little over two years now. I'm not sure I agree with Fibro being a sleep disorder but I do believe extreme fatigue is a big part of Fibro. I recently stopped taking Lyrica I had been taking it for a little over a year. When I was taking a low dose of 50mg I did notice a difference in my pain but eventually it was not working as well. He then tripled by dosage to 150 mg and i felt like i was hitting a wall. All I wanted to do was sleep. I stuck it out for a few months but eventually he took me off because I was gaining more weight an I was just so extremely exhausted. Everyone is different, if you do start taking lyrica I hope it starts working for you and doesn't make you more tired.
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Old 06-01-2011, 01:31 PM   #21  
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I haven't always slept perfect. However, I know for a fact that my sleeping habits have gotten much worse after I started dealing with Fibro. My bowels have also gotten worse. I don't think the fibro is getting worse but because of these other problems that have arisen from this illness it seems to feel so much worse.

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Old 06-07-2011, 12:48 AM   #22  
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I am not a doctor but I am sure I was lacking sleep long before I had Fibro. I also have UCTD so what the heck...I don't even know anymore!
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Old 06-07-2011, 01:55 AM   #23  
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I had sleep deprivation 15 years before I had a fibro diagnosis, and 5 years before I had fibro symptoms.

I think fibro is a "cascade" disease, meaning that there may be several ways to get here, but once you get it, it becomes self-perpetuating, even self-worsening.

The starting point may be anywhere in the cycle.

Maybe for some people, it starts with poor sleep (I think for me, it did).
You don't sleep well, and the sleep deprivation causes increased pain and fatigue. The increase pain makes it harder to sleep well. The sleep deprivation causes more pain and fatigue, which further disturbes sleep.

For some, maybe it starts with pain. They have pain, so they don't sleep well, so they have more pain and fatigue, which causes more sleep problems, which causes more pain and fatigue problems.

There may be a thousand ways to get onto the pain/fatigue/sleep/other weird symptom rollercoaster, but regardless of how you get on the downward spiral, it's still very hard to stop the downward trend, and even harder to get off the spiral completely.

Slowing and even reversing the spiral is possible, but I'm not sure getting off, ever is.

Obesity can be a spiral like that too. Gaining weight makes it harder to do the things that get the weight off, which makes weight gain easier, which makes it harder to do the things that get the weight off...

Spirals do work in reverse too, but the uphill battle is so much more difficult, because it takes conscious effort. The downward spiral doesn't seem to need much of a push to get started.

I think a lot of things contribute to my fibro and the related stuff (IBS and such), and to my obesity too. It's just really hard to reverse the trends. Especially when things affect the spiral that you have no control over.

Weather has become a big trigger for me, and tough luck, that's not something I personally can change. Sleep deprivation is a big trigger for me, and I don't have full control over that. Diet is a big trigger for me, and that I have complete control ever, except when I don't (the worse I feel, the less able I am to make good decisions. So I have to have plans in place, and try to make habits that are so ingrained, that even on a bad day, I stick with them.

I suspect there are so many causes of fibro that a "cure" will be a very long time in coming. I think fibro is like a collander. You can plug one hole, but but you'll still have dozens to go.

Treating fibro is a personal journey of finding all the holes that contribute to your flares. But if the flares are really bad, and nearly constant, you never have the strength and energy to seek out the holes in need of patching (let alone having the strength and energy to actually do the repair work, and to make matters more interesting, many of the repairs only work temporarily, so you'll have to often refill the same hole over and over again).

Fibro is exhausting. Managing fibro is exhausting.
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Old 06-07-2011, 09:53 AM   #24  
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I've got ME/CFIDS rather than fibro, but there's huge overlap and they're probably related, so I thought I'd chip in. My sleep disorders started when the ME did and got worse over time, especially once I became housebound and stopped getting proper signals from light and darkness. When I haven't slept well, various symptoms are noticeably worse, especially pain and grogginess.

I have circadian rhythm disorders, Delayed Sleep Phase Syndrome which progressed into Non-24 Sleep-Wake Disorder. I managed to get a handle on the N24 using bright light therapy, at which point it reverted to DSPS. A few years later, I discovered that darkness therapy controls the DSPS, and have been doing a lot better since then. Certain things have improved a fair amount, and my lifestyle is certainly easier now that I'm sleeping at normal hours, but the ME is by no means cured and has continued its pattern of steady deterioration alternating with stable periods.
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Old 01-24-2015, 02:31 PM   #25  
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You can have a sleep disorder AND fibro - the two often go hand in hand. But I'm not aware of any study that says sleep disorders cause severe pain.
Doctors don't know how to treat chronic pain, so they come up with all sorts of lame excuses not to help you.
The latest theory about fibro, is that it is caused by problems in the central nervous system. Look up some medical articles and send them to your doctor. BTW you doctor sounds like a jerk.
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