Fibromyalgia and sleep disorders

[Sweeterthanhoney]

just wondering if anyone out there suffers from these things? I have Fibro and I know I have a sleep disorder as my nightime schedule is all screwed up and I am always exhausted and never have restorative sleep.

Anyone have a sleep study done? I am looking around for a place I can get one done without a 2-4yr waiting list,like at the hospital around here.

 

[Beef]

Hello,

I know my mom has been diagnosed with fibro...so I know what a pain it can be. I am praying for you and am praying that the Lord gives you a full recovery!

I am sure there is countless info on the net, so maybe do a search, and hopefully you will find some helpful info...
God Bless!

 

[BigNorsk]

Poor sleep is almost universal among fibro sufferers.

I respond pretty well to the low dose of amytriptyline.

Are you taking anything?

One thing not to do is to take sedative type of "sleeping pills", they cause you to sleep even more shallow and so are counterproductive for fibro sufferers. Alcohol tends to act the same way.

I'm not sure why you really need a sleep study to be done. Is it that the doctor won't prescribe anything without the study?

Marv

 

[Sweeterthanhoney]

Poor sleep is almost universal among fibro sufferers.

I respond pretty well to the low dose of amytriptyline.

Are you taking anything?

One thing not to do is to take sedative type of "sleeping pills", they cause you to sleep even more shallow and so are counterproductive for fibro sufferers. Alcohol tends to act the same way.

I'm not sure why you really need a sleep study to be done. Is it that the doctor won't prescribe anything without the study?

Marv

hello Marv

I am an old hat to trying all kinds of different medications. Amitriptalyne just cause weight gain, was on it for years for headaches and gained lots of weight from it before I new what the cause was, lost 50 lbs when I went off it. Tried a few more times since. No go.

Did you know that approx. 80% of Fmers have sleep apnea or some other kind of sleep disturbance? Thus the reason for the non restorative sleep, etc.

I am tired of trying to mask things with pills. I want to get to the root of the problem and try and fix it, not just put a bandaid on it. I have talk to many FM suffers who have had a sleep study done and found out that they do have sleep apnea or are not reaching a certain level of sleep and recieved the proper help and are feeling so much better. It has given lots more energy, less pain(sounds good to me).

That is why I want a sleep study done.

 

[BigNorsk]

I can sure agree with the sleep study being a good idea. You can do a do-it-yourself quckie study if you set up one of the camcorders that can record under very low or infrared light, and just tape yourself sleeping.

It usually doesn't take a rocket scientist to get a general idea of what is going on. For instance if you have apnea, you will hear the stopping of breathing and then the snort or whatever to get breathing again. It's not real precise, but you can get an idea.

I know a lot of fibro sufferers have apnea, goes with the common overweight symptom of having it hurt to move and the easy exhaustion that many experience. Not to mention the tiredness from the bad sleep and all. It's such a package deal it's hard to really point at one thing as the problem. Thing is, you can fix the apnea of someone with fibro and their sleep may improve but they still won't get good restful sleep.

It can be a bit confusing, because if you take normal people and deprive them of sleep they do indeed get many of the symptoms of fibro. Cure the sleep disorder of such a person and you would appear to cure fibro, but it's not really the case.

The common misdiagnosis of fibro makes it quite difficult to really know what is going on. Real confirmation of fibro by testing for levels of substance P seems limited only to research and is even rare there.

I can appreciate your desire to get to the root of the problems, but I think the sleep disorder is simply another symptom of what's going on neurologically. The elevated levels of substance P and nerve growth factor indicate something at a much deeper level than simply sleep apnea. Until we get to the point where we can change what is causing the neurological system to malfunction, everything we do is a bandaid treatment of symptoms.

The good news is that every pharmaceutical company has done the math on the potential gold mine fibromyalgia represents to them and they are all conducting big time research into trying to figure it out, something that didn't occur until quite recently. I believe we are very close to some significant leaps in effectiveness in treatment.

Marv

 

[Sweeterthanhoney]

I can sure agree with the sleep study being a good idea. You can do a do-it-yourself quckie study if you set up one of the camcorders that can record under very low or infrared light, and just tape yourself sleeping.

It usually doesn't take a rocket scientist to get a general idea of what is going on. For instance if you have apnea, you will hear the stopping of breathing and then the snort or whatever to get breathing again. It's not real precise, but you can get an idea.

I know a lot of fibro sufferers have apnea, goes with the common overweight symptom of having it hurt to move and the easy exhaustion that many experience. Not to mention the tiredness from the bad sleep and all. It's such a package deal it's hard to really point at one thing as the problem. Thing is, you can fix the apnea of someone with fibro and their sleep may improve but they still won't get good restful sleep.

It can be a bit confusing, because if you take normal people and deprive them of sleep they do indeed get many of the symptoms of fibro. Cure the sleep disorder of such a person and you would appear to cure fibro, but it's not really the case.

The common misdiagnosis of fibro makes it quite difficult to really know what is going on. Real confirmation of fibro by testing for levels of substance P seems limited only to research and is even rare there.

I can appreciate your desire to get to the root of the problems, but I think the sleep disorder is simply another symptom of what's going on neurologically. The elevated levels of substance P and nerve growth factor indicate something at a much deeper level than simply sleep apnea. Until we get to the point where we can change what is causing the neurological system to malfunction, everything we do is a bandaid treatment of symptoms.

The good news is that every pharmaceutical company has done the math on the potential gold mine fibromyalgia represents to them and they are all conducting big time research into trying to figure it out, something that didn't occur until quite recently. I believe we are very close to some significant leaps in effectiveness in treatment.

Marv

its more than just sleep apnea that I am wanting to get checked out. I know that I am not reaching a cetain level of sleep, and depending which one that may be, they do have a medication called Zxyrem, or something like that, that is supposed to help with that.

Found a place in Grand Forks, ND that I am looking at going to. Going to see my doc on Tuesday to get him to fill out the referral form. The waiting period is VERY short, so that is awesome, and it is only a 3 hr drive.

So, even if you don't think it is necessary, please wish me Gods blessing.

 

[2scoops]

I know of some people who have been healed from fibro, and maybe the sleep disorder ties in. These books maybe beneficial to you, John E Sarno's The Mindbody Prescription, and The Divided Mind and Nancy selfridge's Freedom From Fibromyalgia. There is HOPE for cure, although mainstream medicine may not be able to help. God bless.

 

[SquareC]

I've suffered from Fibromyalgia for about 8 years now (at least since my diagnosis, I think it was about three years before that when the symptoms began) and it has taken over my life it feels like. I can no longer work, because the brief time I spend in front of a computer posting completely wears me out. I couldn't even handle a part time job, they expect people who don't need a break every hour.

There is hope in the form of more recognition for the condition and increased funding for research on a cure, or failing a cure, at least better maintenance medications. However, since they still don't even actually know what really causes it, curing it is not around the corner.

I have a horrible time sleeping. For a while amitryptilene helped but it quit helping, I've tried a variety of sleep aids and nothing really helps much. I'm currently on Klonopin for Anxiety and Panic attacks and that helps as much as anything else I guess. I just don't sleep well. I'm trying to get used to it but I haven't yet and it just hurts worse the less sleep I get.

 

[richkim7]

My Mom and I are both suffering Fibro. I am at the early stages and she is quite advanced. We just went to a doc that specializes and he suggested that I look in to biofeedback. He explained that it helps with concentration by keeping blood flow more normal in the brain. Anyone tried it? Heard of it? I am a physical therapist and come up on this so much in my practice. I am trying to learn for myself, my Mom and my patients. A warning, be careful of orthopedic surgery with fibro. My patient's with Fibro don't recover as well from total knee replacements for example.

 

[graceskr]

It can be a bit confusing, because if you take normal people and deprive them of sleep they do indeed get many of the symptoms of fibro. Cure the sleep disorder of such a person and you would appear to cure fibro, but it's not really the case.

Great post altogether, Marv!

I quoted this part because this is exactly my histroy. My primary care physician and I for years thought I had fibro but poor quality sleep was the culprit.

My true diagnosis turned out to be Bipolar II and treating that with an anti-depressant, low dose Depakote ER, low dose Seroquel at bedtime has completely changed my life.

Seroquel, originally studied and marketed as an anti-psychotic for schizophrenia is now approved for bipolar disorder. It's being used more and more off-label for intractable insomnia and poor quality sleep with great success. It's certainly been a life-saver for me. If anyone reads this and decides to ask a doctor for it, ask to start with a very small dose and titrate up. The official recommended dose for initiation will likely leave you incapicitated the next day!!! The first time I was started at too high an initial dose and had to put conscious thought into putting one foot in front of the other just to walk ...didn't stick with the med, needless to say. Several months later I tried Seroquel again starting with small doses and sleep better now that I ever have in my entire life. Aches and pains are now at 1-3 on a scale of 10 and used to be consistantly 6-8.

 

[Marvin123]

Hello everyone,

Here are some helpful self-treatment tips.

It is important for people with Fibromyalgia to maintain a regular sleep plan and to get treatment for sleep disorders if necessary.

Chronic pain has been known to intensify in the presence of sound stress.
Regular exercise is known to improve symptoms in some patients. For people with Fibromyalgia, low-impact activities such as walking, yoga or swimming are the best choice.
Work with a physician to build up an effective medication regime.
Gentle massage, deep breathing, and relaxation techniques are all usually considered beneficial with respect to chronic pain management.

Fibromyalgia diet tips.

An appropriate fibromyalgia diet should contain less dairy products, especially those that contain high levels of fat; consider using soy replacements instead (soy milk, tofu). Consume less wheat products, as they are not well tolerated by people with fibromyalgia. Reduce the amount of sugar in your fibromyalgia diet. Stay away from food products that contain additives, colorants and preservatives. Avoid any kind of fried foods; consider eating more boiled and baked foods instead. Add more homemade meals in your fibromyalgia diet; consume more soups, as the stomach better tolerates them. Consume more liquids. Reduce the amount of salt and spices in your meals. Reduce the amount of meat in your fibromyalgia diet. Consume plenty of vegetables and fruits, as they are a vital source of vitamins and minerals. Consider taking mineral and vitamin supplements.

If anybody already working on this they can share some more information here thank you


Regards,
Marvin

 

[SquareC]

I have a rough time sticking with the diet most helpful to me, but I give it a good shot, lol. It takes out most of the food I love to eat!

I'm saving money for the specialized yoga courses, but I've done a little reading and such and had yoga classes when I was young, I just can't do all the positions I could then. When doing yoga, it's important to learn the "impaired" version, some of the poses are too intensive on the back and will actually make things worse.

 

[Talie]

People with FMS often experience what's called "alpha intrusions" during sleep, only a sleep study can pick this up (no video camera would even come remotely close to picking up most sleep disorder characteristics).

alpha intrusions usually disrupt deep sleep, and it is suspected that they are related to the person experiecing pain.

Sleep disorders alone CAN cause a lot of FM/CFS type symptoms and therefore it's really important that if you have or suspect you have FM/CFS that you get a sleep study to determine if treating any problems may help at least reduce your symptoms.

The thing about sleep is - that's when our body gets all its repair work done, so when you're not sleeping properly you're body isn't getting a chance to heal.

As for getting into a sleep study sooner than 2-4 years, in canada that may be difficult but I do have a suggestion that will make a difference. Get yourself an appointment with a sleep specialist (I figure you'll need a referal from GP or other specialist - but i could be wrong, not familiar with canada's way of doing things) and then get booke for a sleep study. Once you have your booking, ask to be put on the cancellation list. Then call in at least once a week to find out if there are any cancellations. It can really make a difference. here in Oz I had over a yr wait for my sleep study booking but I acutally managed to get in within two months by being on the cancellation list (and I didn't even do the calling them part of it). You DO have to be prepared to go in at short notice, but it's worth it if you want to get sorted out sooner rather than later.

Also... sometimes FM is a misdiagnosis of another disorder and if it's possible you should get checked out for that too, though it can be rather complicated.

General Info: http://www.chiariinstitute.com/chiari_about.html

Possible Symptom List: http://www.yvy69.ukgateway.net/2/Symptoms.htm

 

[Marvin123]

Hey SquareC & Talie


Thank for your replies and SquareC will you share some more info about Yoga and Talie thank you for very useful resource.

Marvin

 

[SquareC]

Hey SquareC & Talie


Thank for your replies and SquareC will you share some more info about Yoga and Talie thank you for very useful resource.

Marvin

The meditation and exercise taught in Yoga is highly effective in aiding sleep and staying healthy. It tones muscles in a completely non-impact regimen, which distinction only swimming can also make. Swimming isn't always an easy option what with weather, availablility of a pool, etc. Many Fibro suffers (as has been noted) show some improvement of symptoms with proper exercise. There are many classes available, but a person with any back problems (including fibro) needs to check carefully on the instructor and make certain that he or she is qualified to instruct in the limited form of Yoga.... some of the poses are much to intensive for us. Others require some modification to not worsen the problems.

The best thing to start with is meditation. The oft heard Om Mane Padme Om matra is a useful aid in achieving a true meditative state, as are a host of others. Contrary to popular belief, meditation is not achieved by concentrating on thinking of nothing, but rather relaxing and letting the thoughts drift peacefully, dismissing worries for the time being. A mantra, hymn if short, or some other means of focus is a useful tool, but it is only that. Peace comes from within, from knowing that the strength inside us the only strength that truly matters, that our faith and trust in the Divine is absolute, and from calm acceptance of all of life, good and bad. After all, life must include some ills, for what stew is appreciated without salt? It teaches us to overcome adversity. It makes the good all the better because we know it is perhaps fleeting, that some ill is around the corner. So we must cherish the good - it helps us to survive the bad.

Physically, yoga is a series of "poses" that stretch and flex the muscles, tendons and ligaments, increasing muscle tone and stamina. The Lotus position is the most commonly known, but it takes a flexible person to achieve and many Fibro suffers are anything but flexible! An "Indian-style" seat is acceptable if one cannot sit in Lotus! There are books at most libraries as well as in bookstores. Just be careful if you begin on your own instead of with an instructor....it is easily possible to hurt yourself if you go too fast. Ease yourself into it, you will find yourself in much better shape and feeling less pain (although nothing makes it go away completely unfortunately) on a day to day basis than perhaps you have in years. As well as more flexible!

Good luck!

 

[chris777]

I have fibro (though I am begining to suspect its something else)
I was recently put on medicaid as I ran out of funds that I wasted on cobra, to try and get me well enough to work again, my new doc suggested I rule out apnea, and the sleep specialist himself said from the severity of my pain , he doubted that even if I have it, that, he doubted it would be a dramatic improvement, though I am benefitted b ya good nights sleep.

I had my test 3 weeks ago, however I have also been tested for other things as well (some abnormal cardiac test, which proved to be qa waste of time, and pretty severe reflux, which they wantto do surgery on as well)
Taht being said, I wanted to ask something that might be off topic, but was related to sleep.
Has anyone ever experienced any attacks during their sleep, particurlarly on the brink of falling asleep, but not limited to that.
I have had several attacks where some sort of shadowy spirits feel like they are trying to drag me away, or between the headboard and matress, and toward the floor. I have also had a couple of attacks that more closely resemble what is described as a succubus, where I was kissing something that seemed to be a woman, but then during the kiss its face bit down on my lips, and I pulled away and woke up. I have also been clawed, with no visible evidence.

I know that psychologist think this is some sort of natural phenomena, but given the number, and similarity of worldwide reports, I feel it is demonic, (they are atheist for the most part anyway{psychiatrist}) I have only told my experience to 2 people offline, as before I researched it, and discovered other cases, I had never heard of anythig like it.
HAs anyone else experienced anything similar. I have not had much success rebuking them in the name Of Jesus either, as they neither flee, nor get worse. The attacks, have lessened recently, but I have also slipped into sin as well, so I suspect as long as i stay in their scheme for me, they dont bother me, but if I start keeping myself in obedience, they are there to drag me back down.

 

[Marvin123]

Hey SquareC,

How you doing? Sorry for late reply and thank you very much for your helpful info about yoga.

Marvin.

 

[endtimesnear]

I have had fibro. and CFS for over 10 yrs.
Some days i am not tired at all and then all of a sudden the fatigue hits me so hard and i cant do a thing except sit in my chair or on the couch.
My doctor gives me Amatripthyline 150mg. at bedtime.
I cant even clean my house because of the severe pain from fibro. My fibro.pain kicks in when the weather changes in any way.
The only cure for us is Jesus.
Hugs,
Carol

just wondering if anyone out there suffers from these things? I have Fibro and I know I have a sleep disorder as my nightime schedule is all screwed up and I am always exhausted and never have restorative sleep.

Anyone have a sleep study done? I am looking around for a place I can get one done without a 2-4yr waiting list,like at the hospital around here.

 

[SquareC]

Hey SquareC,

How you doing? Sorry for late reply and thank you very much for your helpful info about yoga.

Marvin.

Hey Marvin,

Doing okay. Had a bad spell for a while but things are doing some better. I can hardly be offended by a late reply when I get online so sporadically myself!

I do really hope it helps. Just remember, as with any exercise, it will hurt some, but it shouldn't be agony, that will mean you are overdoing it. A lot of people don't realize how much energy a person doing yoga is actually burning up! Push yourself in moderation, but still push a bit, it's worth it in the long run. Anything that makes our bodies healthier helps us deal with Fibro in less day to day pain (at least on average, there are still bad days).

 

[Anygma]

Fibromialgia here too, well not officialy diagnosed, my doctor don't want to bother with it even tho i've been anoying her with it repeatedly. i wish i could switch doctor but there are no doctor around that take new patients.

i've been suffering since i can remember as a kid and always been very tired. doesn't help that my kids don't let me sleep much these days.

i dont' trust pharmaceutical drugs too much and the docs that prescribes them. i have tried a lot of natural stuff, and some work better then others but i can't do much at the moment since i'm still nursing. i find that 1mg of melatonine does help along with keeping the lights down for a few hours before bedtime. also read something on wikipedia about delayed sleep phase syndrome. it seems to describe my lifelong sleep problems quite well.

for what Chris777 said about the spiritual aspect, i believe Jesus can heal anything and i don't know why our spiritual leaders don't call on His healing power more often. I also had experienced those near sleep attacks years ago. it was probably not as fierce as you describe but oppressing none the less. for me, it was as i felt totaly awake but couldn't move at all, couldn't say a thing and there was this feeling, like an electric current buzzing through my body. it would stop almost as soon as i'd start praying. my prayer repertoir was very limited back then. i believe it was the Our Father that i payed, i'd keep praying some after it stoped. there was other odd things happening in the house at the time. Chris777, if you don't mind, i'll keep you in my prayers

God Bless, and help us make it through one more day
Anygma