Treating Sleep Problems in Fibromyalgia & Chronic Fatigue Syndrome

I have had to take ambien for a few years now. Not happy about that, but it seems to get the job done–along with a few additions. Melatonin, MSM (for some reason, about half a capsule, but no more, makes me sleepy), and in some seasons a piece of a prescription antihistamine–these too are often part of the nightly routine. Just as important is avoiding any caffeine after 5 p.m., avoiding any agitation, keeping regular bedtime hours, avoiding a lot of computer screen work before bedtime (which I don’t always follow), and making sure I have had enough exercise during the day (sometimes taking the dog around the block in late evening helps).

Dealing with sleep problems is the cornerstone of treating fibromyalgia!

I’ve had FM for more than a decade now and the sleep problem is the worst for me too. I got immune to Abien and now Temazpam and my dr. can’t seem to find anything else for me to try. I take Trazadone & a low dose of Seroguel & requip but still wake up often and early. I also have IC, 8 heriated disc’s & RLS.
I believe that Michael Jackson had FM and that’s why he did what he did.

Valerian worked for me for a couple of months but I think it loses it’s effectivenss after a while. The big problem though is that it can raise liver enzymes. I was on Ambien for a while but now when I take it I go on weird sleep eating frenzies. Currently I’m taking Neurontin and Benedryl so help me stay in bed but I don’t feel refreshed in the morning.

I’m one of those lucky ones: trazadone works wonders for me. I can sleep without it. But it can often take me a long time to fall asleep that way.

My problem is a different one: when I physically push myself for a day or three, or if there are back to back weather changes such as we are experiencing this month, I need more sleep than usual.

It is the only time my circadian rhythm lets me sleep beyond my regular waking hour. Sometimes I sleep for 12 hours at a time. And then fall asleep the next afternoon. This is clearly related to physical exertion. I have to fight to stay awake when I’m in this place and get brain fog. Anyone else have this quirk?

I have had CFS for 9 years and Fibromyalgia for 3 years. The combination that currently has worked for me for about two years is 10 mg Cortef in the mornings (maintains the sleep cycle per Dr. Teitlebaum), 3 mg of time release Melatonin and two 500 mg L-Ttryptophan at bedtime. This combination has no noticeable side effects and works consistently. I occasionally add 100 mg of Neurontin if the RLS or Fibro pain is excessive. It took me years of trying different meds and supplements before I found this combination that works and does not leave me groggy the next day.

I have had FM for 15 years and of all the problems, the most persistant is sleep. I saw a rhumatologist about 9 months after I was diagnosed by my Chiropractor. Th rhumatologist prescribed a sleeping med that left a tinny taste in my mouth. Then another sleeping med by another Dr., but I was taken off that because of the problems it could cause. I am now taking Elavil 50 mg. If I stick to a bedtime routine, it works about 90% of the time.

I have fibro, cfs, rls, peripheral neuropathy, plus numerous spinal diseases along with chronic intractable pain. These all cause chronic insomnia.

I finally had a sleep study with revealed I get almost no stage 4 and 5 rem sleep.

I also have periodic limb movement disorder which wakes me up. She diagnosed me with the rls and put me on klonopin. It has almost stopped the rippling muscle movements in my legs and the rls. I am sleeping again.

I take 5mg Ambien along with .25 klonapin. I tried the ambien with trazodone, but then it quit working. I have no problem getting to sleep with the ambien, but waking up at 2-3am is the problem. And I am always tired the next day.

I also think the cornerstone of curing FM is quality sleep.

yup I have the sleep pattern of a baby if I don’t use Trazadone. With Trazadone my brain dos not spike me awake after 4 hours of sleep.

Through an odd and convoluted set of circumstances (including lost days from Ambien) I now take 1mg of Xanax, 200mg Trazadone and 20mg zanaflex to go to sleep at night. My doctor doesn’t seem to have a problem with it…but I have to wonder what is going to happen long-term. I’ve been on this combo for several years. But everytime I go see other doctors they seem apalled by my sleep meds. I don’t know what to think.

I have been taking Neurontin (I use the generic, gabapentin)300 mg twice a day, for quite a few years now and it works very well. At night along with the gabapentin I take 30 mg of Nortriptylene and I sleep 8 hours and awaken rested and raring to go. If I have any side effects, I am not aware of them. When I am rested, my muscles don’t ache at all. Since I am 74, I am not worried about long-term effects, if any.

None of the prescription sleep aids have helped. Early on just taking a couple of regular Tylenol (not PM) or melatonin worked but that didn’t last long.

Like many of us I’ve done lots of research over the years about insomnia, and it seems as if there are as many cures as there are people with it. I did have a sleep study (all night and all the next day) done which indicated narcolepsy. I am also gluten intolerant. I follow a strict diet for that. The narcolepsy doesn’t seem to cause much trouble. Adrienne, I found your comment in this post linking the two interesting.

One thing that I have used that works quite consistently is L-Tryptophan. Before you go run out and buy it do some reading on it. Back in the ’80’s a tainted batch caused disability and some deaths. It has been back on the shelf for several years now. I read an article a couple of years ago by a doctor (I wish I had bookmarked that page) who had been using s m a l l doses to treat insomnia with a decent amount of luck. So I though I’d give it a go. I always use supplement brands that have an exemplary reputation for quality, however all the brands I found had 500mg capsules only. The doctor only used 25 mg with his patients and warned high doses could cause unusually vivid dreams, daytime grogginess and other issues. Drugs.com has some good info.

The first time I tried it I had been going through a particularly long, hard spell of insomnia and nothing was working. About a half hour before bed I took 25 mg and had the best nights sleep in ages. I took it for a week or two to hopefully break the insomnia cycle and then stopped and I continued to sleep better. I take it still on occasion as needed.

Here was the problematic but rather funny part. The capsules only came in 500 mg and I needed 25 mg. What I did was buy a bag of empty capsules (available at health food stores), opened an L-Tryp capsule onto a piece of flat, clean glass and, yes, cut it into 20 equal piles with a sterilized razor blade. Just like cocaine in the movies! lol Hey, if it works, why not. I know that is not the most accurate way of doing it, but I have a good eye and felt confident I was getting it pretty close.

Of course I am not a doctor, or an expert in any way. Just letting you know what worked for me.

Adreienne,

I have read in several places (prohealth, maybe) of many who have commented who take a combo supplement are affected by the Valerian. I think in Teitelbaum’s FFTF he mentions leaving out the Valerian.

Well, I took my sleep meds over an hour ago and I;m wide awake. I received a Myer’s cocktail today and sometimes it get a 2nd wind on those nights!

For sleep: I take 10, 15 or 20 mg Ambien, .5 to 1 mg Klonopin, and a supplement (with melatonin, GABA, Valerian, Scullcap, passion flower, L-theanine, 5-HTP). Also, 400 mg Gabapentein for RLS. I take a low dose of zoloft, 50 mg, which may help.
It is also hard to sleep if I am in pain. Metaxalone helps, or tramadol.

I tried going down on the Klonopin and wasn’t sleeping as soundly, so went back up to 1 mg.

I tried xyrem and felt much better. I still had to take 5 mg of Ambien because if I wasn’t sleepy when the zyrem, kicked in the “drunk effects”, dizziness, nausea were bad. To take sleep aids like this, you must resist the urge to get up and commit to going to sleep.

Valetudinarian

I have FibroCFS since 2000. Sleep is my biggest problem. Your post on Jan 18, 2011.”Treating Sleep Problems in FibroCFS. Syn..” Was very informative. I’m currently trying to find a Doctor as near to me as possible that follows Dr. Teitelbaum’s Protocol. I’m in Palm Springs, CA. 92262. USA. I went to his web site. Found 3 Practitioners, but, have not call them yet…. However more important!!!!
If you could please, please, answer some questions I would truly be grateful. My questions:Q1, Q2, Q3,…..
Q1. How did u get the Myer’s Cocktail? Does it help?
Q2. How u get 15 or 20 mg Ambien? I can only get 10mg.
NO generic Ambiens have worked for me. Any Generic work for you?
Q3. THIS IS THE MOST IMPORTANT QUESTION? I have been researching for years about anything that increases Stage4 and Stage5 Non-REM. sleep. This is the Restorative Sleep. XYREM is the only new drug that clinical trials say it does. I do not mean REM (Rapid Eye Movement ) This is Dreaming sleep, important yes, but not as much as Stage4 and Stage5. HOW DID YOU GET A PRESCRIPTION??? Please help.
I could really use your info on this.

Thank You
LotusCrystal

Namaste

I forgot to add that I had 3 sleep studies. 1 indicated nothing, except delayed sleep phase. A second that indicated I had mild sleep apean for which I have a cpap. On the 3rd sleepy study, my awakenings went fro 70 to ten. I don’t use the CPAP and can’t use the xyrem until I start using the cpap again. I know, I know…..use the cpap!

I have suffered years with insomnia. I tried every sleep hygiene and mind-trick available. Calcium, magnesium, trazadone, diphenhydramine, tea. I used to read.

I have suffered from severe insomnia for about 15 years now……I have taken several different prescriptions…..I started with Elavil, moved on to Trazadone, Ambien, and now Ambien CR…..there were probably more that I can’t remember in there as well…..They all worked for a while and then I’d have to move on to something else. I am currently using a combination of Ativan and Ambien CR. The Ativan is necessary because I have an extremely hard time shutting off and relaxing….even when I meditate I find it hard to shut my mind off many times and I made the swith to Ambien CR about 2 1/2 years ago because I was falling asleep with Ambien but wasn’t staying alseep.
I am happy to report though, that I maybe a change in my diet recently and became a vegetarian in September and since the switch, I have actually been able to sleep on my own without using the Ambien CR for 3 weeks straight…..this is something that I haven’t done in years……I guess eating healthier is making a bigger impact on my body than I had anticipated…..

I’ve been diagnosed with Fibromyalgia since 1993. I tried doxepin and amitriptilin, which didn’t work. My doctor found out about Trazodone and put me on 50 mg. which got me through the night. I still felt tired after exercising and usually have to sleep afterward. In the last 8 yrs. or so I’ve had to increase the dosage to 100 mg. and am taking klonopin 2 mg. for teeth grinding and muscle spasms. I broke alot of teeth before I found out about that one. I’ve changed my diet and lost weight and am doing some yoga, pilates and swimming and/or walking daily. Of course, I try to space everything out. I am now taking 150 mg. of trazondone because I was becoming immune and 1 benedryl to get 8 hours. I do have some vivid dreams but I don’t think that’s the worst thing.
I recently tried Ambien and had to take 20 mg. in order for it to work along with the everything else. I did wake up refreshed but suffered with headaches from it. I also tried Lyrica and Gabepentin for nerve damage (from an accident) which had terrible side effects and I think really messed up my sleep cycle about a year ago. It takes so long for these pills to get in and out of your system. I go to bed at the same time every night and do some yoga before bed to relax. I’ve come to the conclusion that I’m just gonna have bad spells from time to time and I just have to live with it.

I take advil for aches and pains, then I use marijuana about one or two hours before bed. I usually smoke it because it’s very hard in a non-mmj state to get edibles unless you make them yourself. If I have a canna-cookie or fudge than that’s better but it’s hard to come by here in NYS. I also feel that chamomile tea works really good as does valerian capsules but like a lot of people here said, the valerian works only a few times then it’s done working. The chamomile and marijuana are some what similar in effect. (the person in this article is not me although our names are similar and we are both in NYS)
http://www.fibromyalgia-cfids-treatments.info/fibromyalgia-natural-treatments-blog/marijuana-is-used-actively-by-many-fibromyalgia-sufferers-and-most-find-a-great-deal-of-pain-relief-and-sleep-good-as-well-

Hi

I have had post viral fatigue syndrome / CFS for 8 months now after contracting human parvovirus Spring 2010. The pain was so bad that I couldn’t sleep properly and I got stuck in a downward cycle. After trying several drugs we finally found Elavil worked. I think I am starting to become de-sensitized to it and may have to up the dosage or try a different drug. It has been a great help though. My Dr initially tried it because of it’s proven effect with fibromyalgia suffers.

Ambien, Flexeral and Requip are my night time cocktail. I take these every night and sometime I sleep and sometimes I dont! I have FM and other health problems,like many of you. It just seems that nothing works 100% of the time. I have just learned that on the nights it’s not working, get out of bed and stop stressing over not being able to fall asleep. IF Im lucky, after a while , I can finally try to lay down again and sleep. I feel so bad for everyone with chronic pain / sleep problems. Wish there was an answer for all of you. God Bless.

I agree with your assessment. I take the Ambien, which works part of the time, and when it really is working, I talk to people in my family and have no clue about it the next day.
I agree wish there was an easy answer for us all. It is really hard to try to work 40 hours a week, and function at home, when you feel like you have been hit by a mack truck.
Good luck to everyone.

I’ve been using Xyrem (sodium oxybate) for sleep for the last 4.5 years. I’m using it off label as it is on label for narcolepsi. My sleep Dr. prescribes it for me. I wish you could investigate why the FDA hasn’t given clearence to Xyrem for fibromyalgia use. Something stinks with their reasoning. If more people could use this marvelous medicine, the price would go down. I’ve not seen side effects in all these years and it has enabled me to get decent stage 4, restorative sleep. This has decreased my pain throughout the day, and erased my stiffness on waking. Now I can get exercise, drive my car, be responsible for myself in all ways, before Xyrem I was bedridden. I am a woman of 70 and thankful for the quality of life that Xyrem allows me to live.

abotbensussen
In 1994, my mother was diagnosis with Breast Cancer. I rented a room at my mother’s and her husband’s house. I worked a full time job in the Television Post-production Industry. Around 1995 I could not sleep and had panic attacks while driving my mother back and forth to The City of Hope for her Chemo in 1996, my Doctor introduced to“Ambien” and gave me “Xanax” for anxiety. Finally, I could sleep. I started getting tension headaches, or I wake up with migraines. In 1997, I felt tired and slept all weekends. But never felt rested. I am positive this is due to not getting restorative sleep. After my mother’s death Oct.1998. I lost my job of eight years along with 30 others. beginning of 1999. Got another job in 2000, after 6 months, intense burning pain spread from my neck, shoulders down my arms. My hands stiff and painful. Doctors tried everything, pain and aches where everywhere. Again, myself, and others lost their jobs in 2003.Besides, I could not sit long or use my hands. Later friends and family could not understand why I stayed in a dark room, w daylong migraines. I lost any quality of life.
My research has lead me to Xyrem (sodium oxybate) one of the main meds that can help people get more stage 4, restorative sleep needed to repair the body, immune system, release HGH and other hormones. I believe I and (others) would need less meds and maybe I could get off Norco, flexural, Xanax, and BP meds.
1. How did you find a Sleep Doctor?
2. How can I get a prescription for Xyrem (sodium oxybate)it? My family Doctor in Burbank, will work with me, can she prescript it? Does only one Drug Company control it?
I would really appreciate help in this, I need to try Xyrem and see if I sleep better and wake up with less pain. I live in Palm Springs, California, 92262. United States. I Just moved here last year and do not know any Fibro Friendly Doctors, I am Disabled only 54 years old, and I feel my life is over. Please help.

Thank You
LotusCrystal

In 1994, my mother was diagnosis with Breast Cancer. I rented a room at my mother’s and her husband’s house. I worked a full time job in the Television Post-production Industry. Around 1995 I could not sleep and had panic attacks while driving my mother back and forth to The City of Hope for her Chemo treatments; in 1996, my Doctor introduced to“Ambien” and gave me “Xanax” for anxiety. Finally, I could sleep. I started getting tension headaches, or I wake up with migraines. In 1997, I felt tired and slept all weekends. But never felt rested. I am positive this is due to not getting restorative sleep. After my mother’s death Oct.1998. I lost my job of eight years along with 30 others. beginning of 1999. Got another job in 2000, after 6 months, intense burning pain spread from my neck, shoulders down my arms. My hands stiff and painful. Doctors tried everything, pain and aches where everywhere. Again, myself, and others lost their jobs in 2003.Besides, I could not sit long or use my hands. Later friends and family could not understand why I stayed in a dark room, w daylong migraines. I lost any quality of life.
My research has lead me to Xyrem (sodium oxybate) one of the main meds that can help people get more stage 4, restorative sleep needed to repair the body, immune system, release HGH and other hormones. I believe I and (others) would need less meds and maybe I could get off Norco, flexural, Xanax, and BP meds.
1. How did you find a Sleep Doctor?
2. How can I get a prescription for Xyrem (sodium oxybate)it? My family Doctor in Burbank, will work with me, can she prescript it? Does only one Drug Company control it?
I would really appreciate help in this, I need to try Xyrem and see if I sleep better and wake up with less pain. I live in Palm Springs, California, 92262. United States. I Just moved here last year and do not know any Fibro Friendly Doctors, I am Disabled only 54 years old, and I feel my life is over. Please help.

Thank You
LotusCrystal

Years ago, a neurologist prescribed Metanx (a form of “bio-available” folate and other B vitamins often used for neuropathy in Diabetics) to help me sleep. The generic form is Folate. It does require a prescription.

I experimented with dosages, thinking it was helping only because of the placebo effect, but two tablets really has helped me sleep through the night (for at least 5 hrs).

It’s only been recently (after about 5 yrs of taking it) that it no longer seems effective, but it sure was nice while it worked. And because it’s not a traditional sleep aid, it doesn’t have the side effects that drugs like Ambien or benzodiazepines do.

Best of luck in your search for ever-elusive sleep.

When I was diagnosed with fibro about 5-6 years ago the rheumatologist asked if I was sleeping well and of course I wasn’t LOL. He said that Tizanidine was normally used for muscle spasms but was being used for fibro. I also take some Tylenol PM, one 300 mg gabapentin and propranolol. It does help to have a “routine” before sleeping – I turn off my computer a few hours before, watch TV, go to bed around 10 pm, read for a half hour or so. I don’t drink caffeine after 4 pm, and not eat after 8 pm. This works about 90% of the time.

After years of never feeling like I had not slept at all, falling asleep during meetings, and having a car accident because I fell asleep while driving, I had a sleep study done. I was diagnoised with sleep apnea and narcolepsy. I’m now taking provigil daily to help me stay awake. It’s working great. The only problem is that it is so expensive and I have to jump through hoops every year to get my prescription renewed. I just got a new prescription and it cost me, out of pocket $704 for a 3 month supply. After that it will cost me $209 for a 3 month supply. I’m scared that when I retire in 5 years I won’t be able to afford it, especially since I’m on so much other medication. I’m using a CPAP which has been a gift from God. I take doxepin to get to sleep at night. It was crazy, during the day I could fall asleep anywhere, but when I would go to bed at night, I couldn’t go to sleep and then when I did, I’d wake after about 2-3 hours. I was so miserable and desperate. It’s really sad to take medication to sleep and then take medication to stay awake. FM affects you in so many ways. I don’t wake refreshed, even though I’m sleeping 6-8 hours a night.

Does anyone else experience sleep paralysis? I had a sleep study done and I has only 11 min of REM sleep right before it was time to awaken. I sometimes wake at night and cannot move for a while. I awaken feeling as if there is an earthquake. Yet it is not of course, my body inside is shaking and I cannot speak or move although my eyes are open. Scary. And I also have experiences where people keep trying to wake me….and I sense they are trying to wake me..yet I cannot move or wake up. I have the phone ring and do not hear it. My therapist called today..I could not answer phone, my daughter was pushing me to wake up, but I could only lay there and sleep..slightly aware if her actions. She finally just answered the phone and put the phone to my ear, and I spoke half asleep and it took me a bit to wake up and talk somewhat normal. This was at 11:30 am, after sleeping since 10pm the night before. This does not happen everyday, just here and there. No change of meds. In fact my meds are not too strong since I awaken several times through the night to use the restroom. Does anyone have any ideas or suggestions for me? Thanks!

I had the sleep paralysis once in response to taking Valerian. I will never take it again. I hope you can figure out what is causing this for you.

Thank you for replying. I hope to find an answer to all of the symptoms I have, as do most of us on this site. Hugs

This is an article I wrote for my members of my fibro group. I myself do wear a cpap as well. And I am taking trazadone… and it works great for me. I hope it will help all of you…
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Fibromyalgia syndrome has at the top of its list pain in the muscles. The escalation of the pain is caused by poor sleep. When we sleep, we need to get to the delta level of sleep. This is not the REM level but a level where our body repairs itself and regenerates the hormones the pain signals have burned off.

But getting a good deep sleep is a challenge for fibro victims. Here are some good guidelines to help achieve that wonderful depth of sleep.

Have the most stress-free day you can. Stress increases cortisol in your body which increases your pain signals.

If your bedtime is 10PM, then stop eating at 7 or 8PM. You want to have your stomach able to sleep at night instead of digesting.

Then about 8:30PM, turn the lights down and relax to soothing music or a relaxing book.

About 20 minutes before bed, fill the tub with hot water, as hot as you can stand it and add epsom salts and perhaps some with lavender in it. Epsom salts will help the muscles and lavender will sooth the mind and body. Soak for about 15 minutes.

Get a sleep mask to block all light. Take about 3mgs of melatonin, 300mgs of L-tryptophan, and 100mg of 5HTP. These are simply natural supplements that will wound you down to a deep sleep. (I recommend the NOW brand.)

Try to get 9 to 10 hours of sleep. This is a normal sleep hours for humans.

I’ve had CFS for about 20 years and FM for around 15. I’ve found that low-dose tricyclic meds work best – doxepin, elavil, pamelor, etc. I take them with melatonin and a magnesium supplement at bedtime. I also practice gentle yoga, which helps with relaxation. The key for me is not getting too tired. Then, I’m like a baby who is too wired to go to sleep. I actually sleep better at night if I’ve had a good nap during the day.

Restoril, for a short period. It’s not meant to be used every night because of tolerancy issues but I am allowed to use it until it stops being effective at the lowest dose and then I have to find something else. I can also do another trial of the trazodone to see if it will start working again (I have heard of people switching up on sleep meds just to keep the body guessing tho you have to ask the doc because you don’t want a bad interaction!)

There are other tricyclic antidepressants. Elavil/amitryiptylline made me drowsy all the next day but some people do well with it. Nortryptilline is another.

Some anti-anxiety meds are sedating but tolerance can be an issue. They say Xanax is highly addictive but truly, I never thought so. I took a very, very low dose because I was over-responsive (got VERY sleepy and uncoordinated).

I don’t know if they would do muscle relaxants for someone who have sleep apnea, but cyclobenzapine/flexerill is a commonly used one. I ended up using Soma, which a lot of docs will shy away from (again, risk of addiction/tolerance). Cyclobenzaprine seems a more benign “starter” option.

There are SO many sedating anti-depressants and anti-anxiety meds and the tricyclics are generally older and therefore docs know what to expect and don’t mind prescribing them.

Lyrica improved my sleep, but it may not work that way for everyone and we know that the side-effect profile for Lyrica is a little steeper. I had some weight gain but I wanted to stay on the drug because I felt GOOD. Then, after awhile, I started feeling so fatigued during the daytime — I think it was actually depression from the medicine as I had the same problem with Topamax.

There’s sleep hygeine, which is helpful but with the alpha wave intrusion, I don’t think it can stand alone. You could try slipping in some foods containing tryptophan and see if it improves your sleep at all until you’ve got something else. Just a wild guess. Tart Cherry Juice is more melatonin and you’ve done that.

Get in touch with your doc. My rheumy said that I was running out of options so I was going to see a psychiatrist who might open up the options for me again, but my PCP stepped up and said he’d be willing to give me nortyriptilline. You could try the sleep center for recommendations but they’re usually pulminologists… I Almost went the route of a sleep clinic doc who specialized in anesthesia. Not because I thought I would get anesthesia, but because I thought it was a better option than a pulmonologist who did sleep medicine.

Benedryl tends to leave you with a 2 or 3pm dip in energy the next day — I think a lot of over-the-counter stuff has Benedryll in it. With your breathing issues you may need some specialized advice.

ive suffered with fm for 20 yrs+ CF for most of that time,not sure whats worse,the pain or the tirdness,insomnia is the worst thing in the world,as how can your body repair its self if it doesnt rest?i get roughly 4-5 hrs of broken sleep (waking up at least 4-5 times) a night,on a bad night 2-3 hrs,i just dont ever get into the deep sleep we are surpose to get and always wake roughly 2 hrs after i fall asleep,then down hill from there,all my dr precribes is amytriplin to relax muscles and help me sleep which it does help me sleep at all,although does help with pain a tiny bit,ive tried 10mg,20mg and 50mg which is no help,still dont sleep and makes you feel like a zombie in the morning,when you have kids,you cant live like that,how do i get my dr to try other things?i cant remember the last time i woke up feeling refreshed, its been years.any suggestions guys?

I know exactly how you feel infact I believe that Michael Jackson had FM and that’s why he couldn’t sleep and look what he did? Have you tried Temazapam? it worked for me for years but now I’ve become immune to it and my dr. can’t come up with another for some reason I also take requip for RLS & a low dose of seraguel at bed time. I never wake up feeling good but if I could just get 8 hours it would be a miracle. I also have 8 heriated disc’s & IC.

I took Ambien CR and started having very strange side effects. Now I’m taking just “plain” Ambien and it’s been working very well. My insomnia was driving me crazy as well as just making me feel worse. But getting a good nights’ sleep is really helping.

I’ve had CFS for 20+ years. Since among the symptoms are myoclonus and other neurological weirdnesses, I’ve no choice but to take a small amount clonazepam (Klonopin) at night to even have hope of sleep. (Other meds for this resulted in life&death ER visits so I’m sticking with what works for me.)

But, sleep is by no means sure even with this, baclofen, and all the herb teas in the world.

Pain is also an issue, especially in terms of being able to sleep, of being constantly aware of pain even if sleep is acheived, and of waking not because I’ve had enough sleep but because I can’t bear the pain anymore.

Hubby and I just invested (and it’s a whopper, I’ll admit) in a Sleep Number bed. Our first night in it was Jan 13 and I had my first night in ages with no awareness of pain once sleep was acheived. It’s no cure, but it helps with the pain aspect.

I still need headphones and a lightweight audio book so I don’t lie there worrying about not sleeping, but at least the pain is lessened in the night.

I have had sleep problems for as long as I can remember. I have tried it all, including a sleep study. I didn’t sleep enough for them to get any information. So, that was helpful. I have used Ambian for years. I do sleep, waking off and on, taking a little more Ambian… I sleep but never feel rested or like I have any energy the next day.

5HTP helps me sleep on a fairly regular basis. Because of the (what’s that word that I NORMALLY know, but can’t think of now cuz I’m foggy? When there is too little of something to meet demand?) Anyway, I will only get the 5HTP that is offered in my doctor’s office and also so that he can monitor me for seratonin syndrome…

Ambien CR made sleep better but being an SSRI,I had a terrible time with toxicity that screwed with my heart. It was a nightmare to go through withdrawal. I now use Rozerem and that gets me to sleep. I get 5-6 hours most nights and I am somewhat more functional. I invested in a high end Tempurpedic bed that has the gear to raise/lower head/feet. This has been a miracle. I’m less likely to waken frequently due to pain. I also use CPAP for sleep apnea.

At bedtime I do some light reading til sleepy. Keeps me from fixating on not getting to sleep right away. Also helps me to put aside the general aggravations.

I live in CA and medical MJ is legal and I use it at night along with the Rozerem. That too has made a big difference. I use the oral form packed into gel caps.

A warm bath helps…especially since I have a whirlpool tub.

An electronic air filter in the bedroom keeps the dust down and the white noise keeps the household from waking me up too early.

Lastly, I am resorting to gastric bypass soon. The various fibro and joint pain problems have kept me sedentary and dieting doesn’t seem to work for me. The extra 100+ lbs I have packed on over 20 years is causing a lot of joint pain.

I have a wise ass MD who makes remarks like..You need to go on the Auschwitz diet or No one ever got fat on fish heads and rice. I suspect he does not believe Fibro is real. If there were more MD choices here I would change. Many doctors refuse to take people with Medicare or Tricare.
I have gotten rid of most of the medications pushed at me because they didn’t work at all, for long or caused terrible side effects. I feel somewhat better without them. My migraines don’t get as bad or last as long now that I stopped all the stuff they were giving me for chronic migraines. All I take now are Aciphex for reflux, Rozerem for sleep, and Elmiron for interstitial cystitis.

My sleep problems seem to worsen with different psych meds that I take to relieve my symptoms. As soon as they reach the therapeutic level, I start having sleep problems. I used to take an MAOI and would go days without sleeping, then crash for days and sleep straight through, day and night. I’m on Celexa now, and as soon as I started to feel better, I started to wake up after 5-6 hours of sleep – I need at least 8 to function properly. Since that’s the end of my sleep for the night, I get on the computer at 2 a.m., then watch TV until the paper comes. Many years ago, before my symptoms worsened, Halcion worked well. In more recent years, I’ve tried Ambien, which didn’t work at all. Since I’m on disability and don’t work, I can afford the luxury of taking it easy when I’m too tired to function, so I really don’t actively try other methods of sleeping through the night. With this problem, I could never work through the day.

Whilst I am based in the UK, one EEG recording, reference the diagnosis of M.E., revealed a marked loss of delta wave activity, this proving a loss of deep sleep. One blood test also revealed low growth hormone, noting that growth hormone is released during deep sleep. This is why drugs such as Trazadone, even when sleep is provided, do not trigger the correct sleep profile, therefore, they have limited benefit. In fact, it is only Xyrem, alias Sodium Oxybate that delivers deep sleep and unlike other drugs used to treat insomnia, it can be used long term without the benefit wearing off. However, further medical tests in my case revealed an imbalanced autonomic nervous system, diagnosed as dysautonomia, therefore, this underlying problem does cause sleep problems including insomnia and an inability to sleep correctly even when asleep.

Dysautonomia also causes my body to be biased towards anaerobic metabolism, triggering the symptoms of rapid fatigue, exhaustion, etc., and pain upon exertion. This was detected by cells not releasing Carbon Dioxide as they should, therefore, a poor uptake of oxygen triggering symptoms very similar to anaemia. With increased cell rigidity, viral pathogens inside cells can, to some extent avoid immune system attack. One positive test for XMRV infection, rigid cells that the immune system cannot attack, one stalemate condition, a chronically activated immune system, and dysautonomia becomes inevitable. This leaves the question of, ‘is M.E. caused by chronic XMRV infection leading to dysautonomia, or is dysautonomia allowing XMRV infection to persist?’ Perhaps the antiviral drug Raltegravir, that can penetrate cells and block XMRV infection, may provide some answers.

I tried Lyrica for 6 months, I slept like never before and my pain decreased, it started to stop working after 6 months though. So I came off it and have never managed to get rid of the extra fat I gained on it.

Naps save me, without them my sleep decreases to 3 hours a night. With naps, I can sleep 4-7 hours sometimes. Naps keep me relaxed, helping sleep later on. No naps leaves me so tired and stressed that I cannot get to sleep at night.

In the UK though that is labelled as inappropriate sleep and I get filthy looks and tutted at by CFS health workers for it. They do not listen to my explanation of why it works for me. I have PTSD and have been stressed since the age of 12, to me to decrease my stress is very important but they are not interested in that side. Still it now works, I am begining to feel relaxed for part of everyday and my sleep is slowly improving.

You can get melatonin here, but only if you promise to stop napping. I cannot promise that so they refuse to help. Think I am doing okay without their judgemental attitude though!

I have tried ,Well were do I begin listing them. Trazodone which left me,with unpleasant side affects. weight gain being one. My GP put me back on Temazepam. I have no problems falling asleep it is Staying Asleep. I wake up 2-3am Feeling Awake and Refreshed. I usually start to wilt around 4-5pm.
The cycle starts all over again.

I have found Xanax helps me go to sleep, but after 3 hours I have to use the bathroom. Then I’m up an hour later and unable to sleep anymore. I take a long nap after a late dinner for 3 to 5 hours, so in total, I’m getting sleep.

Insomnia, sleep apnea, et al that best Adrienne, are by far the most common and hideous-to-deal-with complaints from FM’s with or without CFS, TTT, Adrenal Fatigue, ME.
It does not matter what the medical terminology used, the tests that ’show’ how ‘we cannot be read we are so bad’ – don’t even go there is my 1st plea to all sufferers! Why upset yourselves any more than you already are.
Get practical is all we can do! What has helped me personally and most of my patients in South Africa, is: AT 6PM take 1 GABATROPIN CAPSULE600MG + begin with HALF x 5 nts a 3mg Melatonin 45 mins before 1030pm latest ‘want to sleep’ time. Add other half 5 nts later. Over age 40 rda is 9 mgs for FM DO have a hot bath before this with lavender, neroli and chamomile aromatherapy oils, 6 drops each in bath, after bath gently allowing towel to dry you, with tranquility music playing all the while, no TV on in the bedroom, patted on mix of lavender, chamomile, geranium pure mixes pref to already mised creams, along with ARNICA D6 CREAM for more muscle relief. Breathe deeply,have lessons is deeep breathing and listen to AUDIO VISUALISATION CD’S . Add 2 caps Valariana, Hops, Passiflora, lavender, avena sativa. Use PRENENALONE 2-3 tablets from 130am-430am wake up once, and if nec, another 1 Herbal mix cap. You will sleep, tho sporadically at first. GABA increase to 3 at same time as Melatonin if nec, after 5 nights. Patience is our prerogative. Use It. Sharon Levin http://www.fibromyalgiasa.co.za

I take clonazepam (1 mg by prescription) and 3 mg melatonin. OK to bump up both if necessary. If you have fibro and insomnia and haven’t tried clonazepam, talk to your doctor.

this is my “evening cocktail”:

25 mg amitriptyline (RX)
350 mg carisoprodol (SOMA) (RX)
500 mg glucosamine sulfate

adn 2 of the following:

100 mg L-theanine
400 mg lemon balm
750 mg GABA (gamma aminobutyric acid)

1.5 mg melatonin (1/2 of 3 mg pill) resets my sleep clock if i start sleeping too late

valerian works for me too, for a while.

good luck

I use a C-pap machine also and it keeps my husband busy at night just keeping it on me. I use Benadryl for 2 reasons at night, one is it keeps me from plugging up while I sleep and pulling the C-pap off, another is it helps you to sleep longer. I have been using some supplements recommended by a nutritionist from Medigenic’s, I get mine on the internet. I use the Fibroplex for fibromyalgia and the Ultra Clear Plus PH, my rhuematologist thinks it’s a bunch of Malarkey but tells me if I feel it works then use it, so I do but I take it at night because so many of the cleansing products work better while you sleep, if you can get to sleep. I also pray and meditate until I fall asleep, keep the new age channel on if I had some tapes of ocean or thunderstorms those work too!

tried every sleep aid in 16 years of fm and exaustion, but it’s a hit and miss situation. 3 years ago If I fell asleep and ended up sliding down off my pillows and ended up laying flat I would end up with a sore throat. I have acid reflux and had it so bad last summer I was seriously wondering if I was getting stomach cancer. felt like I swallowed the lit cherry of a cigerette which was gastritis,( burning was inflamation of tissues) and nexium did noting but empty my wallet. tried everything for it, finally I had to buy a bed that goes up and down, so I can sleep at an angle so the acid doesn’t go back up my esophagus. sleep is hard enough. I take ambien cr, but I really wish they wouldn’t make meds that make us want to eat. It’s not our fault that’s the way they work. elvil/amitriptiline causes weight gain too. wish someone would have told me befor I gained 30 lbs. so I’m telling you. got the bed at sleep country ( they were having a sale) I can only sleep on the memory foam stuff they made for nasa. I found the pnes that r 12 ” thick were too hard, was ready to leave the store, I told the man I have FM and have been sleeping on the floor for 14 years cause my husbans bed is too firm” he said trythis one. it was softer, and it went up, and feet went up to(which has been great for my vericose veins, they don’t hurt anymore. In the back room they have mattresses that they use for fairs and such and the side of the bed was a little dirty. said o.k., we got $1,000 off. fm so painful, the meds cost so much and may not work. why they can’t make a pain med that works for more than 3 or 4 hours is beyond me.Tramadol is agreat pain relieve try taking 1 cyclobenzaprin/flexeril 45 min. before bed, the ambien and if u have to u could take 2 benedryl a half hour later if not already asleep. However, it can dry your eyes out, so I don’t take that evey night. I don’t get into rem sleep.costco sold 2″ memory foam that I put on the new bed top.

Hi there! I am new to this site and I am not classed in any one bracket, except that my Doc. thinks I dont fit into his box!!He gave me 75mg. Lyrica after a mutual discussion and diagnosis, he was mainly concerned with my sleep.I only took 2 of them and this is the fourth day with a hangover.Day 1&2 had me staggering like the worst drunk,coupled with the worst stomach anxietyI’ve ever had.A curious thing happened-I was watching a story about something very sad and 85% of that feeling disappeared!!I still feel dizzy and a bit groggy but The anxiety thing hasn’t returned.I think that there is a psychological factor present in these diseases.I do not go to bed until 1 pm. at the earliest,even though I am on DSP. here inAustralia I have never slept before this time even when I was working as mechanic,Cooking in Late closing restaurants and between 2004 -Dec 1 2008 running My Ladies fashions business.I believe we are conditioned to believe more sleep than we really do safely require.I leave the radio playing all night so I don’t sleep for too long.If u go to bed too early u are still using up a lot of energy in digestion,also I have trouble with mucus about the time I retire and am likely to get asthma attack as I start to drop off.I go to sleep after this sneezing episode and asleep in no time.I never remember what was playing on the radio.My wife envies my sleep.She’s on the sleep meds and still says she does’nt sleep!! we sleep in seperate rooms and beds to deal with our different patterns.I think that tegretol is one of the best meds. it works on fibrosis and relaxes the muscles,not many Docs, know this,I informed mine of this and It doesn’t give me a hang over if I take 100mg. Which is a fraction of the normal dosage>This is an anti convulsive epilepsy drug.Also when u wake up feeling like a locomotive has hit u and then run over u Familiar? take 2 Panadol or tylenol, rest a little,u will not notice your getting up to do things for the daily grind-largely

Adrienne:
What are your thoughts on the use of medical marijuana for Fibromyalgia pain and for better sleep? I recently found out that I wouldn’t have to smoke it or eat it… that it comes in a tincture or a condensed oil that you drop under the tongue and just hold it there until you need to swallow. This form has never gotten me high and I am sleeping through most nights now with no pain.
Do you have any more information on this option?
Since Medicinal Marijuana is legal in Arizona, I’m curious about this on a trial basis.

I feel like I do not know how to fall asleep. It does not come natural. I am trying many different thing and the soma seem to help. Also know that I do not have to be somewhere as I became anxious to know if I will be well enough to go. I feel different all most every day.
Pacing ones self is the best even if the house is not perfect. I lay in bed with a warm electric blanket and find a movie. I feel safe and do not have to be ON. Staying away from stress helps in a big way.

I have been wrestling with Chronic Fatigue Syndrome for twenty five of my fifty two years. Three years ago I was also diagnosed with Obstructive Sleep Apnea and the alpha wave intrusion into deep sleep. CPAP use dramatically improved my condition, from basically very low functioning with severe exhaustion, chronic bronchial infections, and a myriad of other problems, to a decent (although not ideal) functioning level. I use a combination of five prescribed sleep medications, all in low doses to minimize morning sedation. It has taken a few years to get the right combination for me, with the help of my CFS specialist. A very interesting point is that my sleep disorders doctor, a pioneering doctor and prominent in the Cincinnati, Ohio area, told me that there are three ways to get growth hormone. One is that it is made in deep sleep. If you don’t get deep sleep, then there are two other options. You can get extremely expensive injections of growth hormone. Thirdly, your body makes growth hormone when you get vigorous exercise. It was a year and a half ago when he told me this. Because I have struggled recently with excess weight, troubling low blood sugar episodes, and some nights of short sleep duration, I have started exercising on the treadmill. More accurately, I have forced myself on the treadmill. Never thought I could survive the treadmill; however, I have been sleeping better and my energy is significantly better. If it is at all possible, try to get vigorous exercise. I make this suggestion, cautioning others to very carefully decide if they are capable of doing so. They may not be ready. An exercise program must start very slowly, like walking for ten minutes. However, other treatments must be in place for many CFS patients to begin to exercise. I feel like my experience has given me so much to say about the different aspects of the illness, but there are limitations of space here.

I hope you will pardon the 2nd entry – I MISSPELT PREGNENALONE (the cortisol-antagonist hormone). I also OMITTED – POGESTERONE BIO-IDENTICAL CREAM, used after bath am and pm, half hr before sleep and after awakening, promotes not only a new pathway for Estrogen to develop, but is an ANALGESIC, ANANTI-ANXIETY AND SLEEP PROMOTER. Progesterone bio identical cream (NOT WILD YAM which is USELESS and has no scietific basis), also assists, from age 20’s-30’s with PMS, Endometreosis reduction, fibroids etc. Some anti-aging specialist like to use 100g Progesterone Capsules to enhance sleep, just before 10pm preferably. This certainly, with all the other NATURAL HORMONAL ASSISTANTS ie Melatonin, DHEA, DMAE, GABA, 5HTP, SAMe, apart from the combo already mentioned including Valariana and Passiflora root and all the lifestyle changes that will need to be put in place with correct eating for our conditions, will enhance sleep patterns and eventualy lead one to ‘acute’ insomnia-periods, to be breathed back into sleep, quite easily, comparitively speaking! Sharon Levin http://www.fibromyalgiasa.co.za

KIM-having just logged onto your comment – I would suggest that ALL SUFFERERS 6 monthly have their Glucose, Insulin, IgG, IgI, Pogesterone, Estrogen, DHEA, prolactin, Cortisol, Free TSH, Free T3 and Free T4 with Thyroid Ab’s checked – with Insulin Resistance being ‘dejere’ with FM +CFS, even with the most vigilant of clinical nutritionists must ensure that they assist patients to elimianation diets for life, and keep a check on the above hormonal and immune system levels. Good luck – I hope you win. Sharon Levin South Africa – Head of FM Support and Holistic Healthcare Integrative Consultant/Counsellor/Clin Nutritionist

After many medications and a few sleep studies I can honestly say that my sleep cocktail has helped me the best and the longest time. I have sleep apnea in the brain and obstruction apnea. I will have to use a C-Pap for the rest of my life or when they find a cure for apnea’s of the brain. I have restless legs syndrome, periodic limb movement syndrome, snoring even with the full face mask on, insomnia, back pain (I have had 2 surgeries now for blown disks)nerve pain,depression, nasal congestion & tinnitus. These effect my sleep every night if I don’t take my cocktail. I take Clonazepam, Mirapex, Flexeril, Lyrica, Hydrocodone,Trazodone,Paxil & Saline Solution. I also put a bed buddy(found at Walmart and Walgreens for $10.00) heated for 2 minutes in microwave & placed at the foot of the bed to help my cold feet relax until I fall asleep (about 7 minutes). Talk to your doctor about a cocktail. I didn’t put my dosage because everyone needs a different dose and I started with lower doses and fewer medicines to start with, as you will too. Nothing heavy to eat or drink for several hours prior to bedtime. Once you have a routine and comfortable sheets, blankets, room temperature around 67 degrees and medicines, you should have more sleep nights then before. You may have a night of insomnia once in a while but don’t panic, sleep will come the next night. I hope that something I listed will help you get a good night sleep. Sincerely Sharon I suffer with FMS,Insomnia,RLS,PLMS,Nerve Pain, Depression & Nasal dryness & Congestion and Vivid Dreams with or with out medicines.

Have you been seeing a psychiatrist? They are the ones that write prescriptions as well as meet with you about 20 mins. a month to see how your meds are working and if you are having any physical or medical changes. I believe you can get a on going prescription from one of those drs. You should see a councilor too for the depression you probably have since your Mom passed away. You were her caretaker for 4 yrs, right. You can’t release all that by yourself. Best of luck to you on getting the help and meds that you need. Sharon

My Mom didn’t pass, she will be 90 on 4-26-11 and I will be with her on Easter. My Dad passed almost 5 yrs ago and that worsened my depression etc. I do see a counselor every 2 weeks, but medicaid won’t let me be seen more often because I will run out of counseling time before the end of the year. I have NO money for OTC pills, that is why I keep taking what the dr. prescribes. They cost $.50 to $2.00. I hope you understand. Thank you for writing to me though. Sharon

I have tried everything or thought I had….GABA has been amazing for me. I have been taking for over 2 months and I am sleeping better than ever. Started at 500mg but that might be too much for some people. But my mom tried it and it did not work. BEFORE YOU TAKE IT YOU SHOULD KNOW THE SIGNS OF TOO MUCH AN OVERDOSE CAN EASILY HAPPEN. So some people should look at the Glutamic Acid supplement cause cause it is partially converted to GABA

good luck and hopefully someone will get a good sleep

SPECIFICALLY melatonin 12 mg, gabatropin 600mg, theanine 600 mg and phosphatidyl serine in combination seem to have a multiply synergic effect on relieving insomnia, panic, and anxiety. It not only removes depression but goes on to exert a most apparent mood-lifting action. The combination of four has an unexpectedly potent, prescription-grade strength. Its singularly unique effect pulls one uncontrollably down into a powerful vortex of sleep, but only if that is what you desire.
Using twice per week will cause little tolerance.
So strange that a particular formula can amount to apothecary magic.

A doctor just diagnosed me with Organic Sleep Apnea Obstructive. What exactly does that mean and can I expect to be covered under Veterans Disability.

The only thing that works for my insomnia is 50 mg of Elavil (amitriptylene). I have Fibromyalgia. It takes a few hours to work but once it kicks in, I’m asleep for up to 12 hours. I also have sleep apnea and bruxism. My CPAP machine broke and it may cost $800 to fix, and with no job, and no health insurance, I don’t think that’s getting fixed any time soon. I have bought lots of hard splints for my teeth grinding, but I spit them out most the time when I am asleep.

I have tried everything that has been mentioned. Xyrem was the only drug that helped.