From the article: Sleep Hygiene for Fibromyalgia & Chronic Fatigue Syndrome
We could all stand to sleep better! Lack of sleep makes all your fibromyalgia and chronic fatigue syndrome symptoms worse. Find out how other people with these conditions have been able to sleep better and share your own experience! Share What Works For You!
sleep - watch what you take
- I forgot how much worse insomnia can get. I lay awake hours and finally fall asleep before the sun comes up. I didn't sleep for two months before CFS and that phase is back. It's frustrating so I try not to have caffeine or vitamins too late or be too active before I sleep. Even if I'm tired, I wake up again when it's time to sleep. Frustrating but at least I'm sleeping after I finally doze now.
- —Guest sue
Any advice?
- I'm off caffine, glutine, meat and I still can't get a good nights sleep. I have to say my average pain levels are less on this diet, but... I go to bed and get up at the same time every day - even at weekends. Still doesn't make any difference. I hate relying on drugs that aren't suppliments/replacing or moderating body chemicals, e.g. painkillers, but I pretty much live on them because without them the pain is insane. I have to have the air moving in the room and I can't bear things to be warm - so no heat remedies for the muscles unless the general temperature is very cold. I can't stand hot baths (panic attack last time I tried to have one), and though I enjoy my luke-warm showers, they stimulate rather than relax. Muscle relaxants do help the pain, but I don't get a refreshing sleep on them. I've got a memory foam bed and it is very comfortable. Anyone able to offer advice that's worked for them with a similar set of criteria? Thanks :)
- —Guest Suzy
Staying Asleep
- There's nothing like a good nights sleep, even though it's often not enough to give me energy, but without it I'm toast. What works for me is the following:Melatonin 3-3mg, 1 TBS Calm by Natural Vitality and a TOTAL miarcle I recently discovered, Anavone, an isaflavone supplement from www.MaxamLabs.com. The Anavone helps with adrenals and 8 squirts at bedtime and I sleep really well. Love it! I tried all the herbal supplements and none of it worked for me and I'm not into prescription sleeping pills. Hence, my search continued until I found something that worked.
- —GoodCasey
Help with a good nights sleep
- I have learned through the physical ailments that I have that one must have a routine and stick with it. You want to eliminate all sources of caffeine 3-4 hrs before bedtime. I also find that taking a warm shower before bed helps ease my muscle aches and helps fall asleep quicker. I have trouble staying asleep at night but I use my ipod with some easy listening music and it helps me a lot. Meditation works if you are stressed, just go to a "quiet" place, sit and close your eyes, take deep breaths and relax. I hope this will help those who have sleep problems. IF all else fails, speak to your primary doctor for additional help.
- —Guest MLC
No Xyrem!!
- Ive had fibro and chronic fatigue for over a decade. Sleep is awful. However I have tried Xyrem and will be an advocate against it. It's very dangerous. Yes you'll sleep but if you wake like info thru the.night awful things can happen. I have been on literally over a 100 medications for these as well as lupus and.arthritis and this is the only medicine that ever gave me horrible aide effects. If you wake and go to the bathroom you can very well fall, smash your face and lie sleeping in a pool of blood till you're found. Xyrem is not the answer. I know its frustrating but we must look elsewhere.
- —Guest Matt
Sleep
- The only thing that helps me is Ambient every might. I get scared I'm dependent on it, but off of it I can't sleep at all. Frustrating.
- —Guest Tina
re: Xyrem
- I have been told both by sleep therapist and primary Dr. Xyrem is not something they can prescribe. So where are all these people getting it prescribed from? The pain of FM alone is enough to deal with, but when u do not sleep u r still in pain! Day and night after night after night. To me it is unreasonable to have a treatment that works and not be allowed to take it. Why can't I have refreshing sleep like these other people?
- —Guest gail
cymbalta
- I had a really bad reaction to cymbalta. Before I finnally realized wht was causing my problems I was to the point where I couldn't sleep could not even close my eyes, for days. Now Itake melatonin, tramadol, and amitriptyline and my pain doc recently added zanaflex for my muscle spasims. I rarely have a night that I can't fall asleep now. I have ME/cfids/cfs. A word of caution some doctors think chronic fatique is the same as cfs, and use the term cfs when they are just thinking you have chronic fatique, which can come when one has a chronic or serious illness, but wouldn't have it if they weren't sick with the other illness such a fibromyalgia or cancer or diabetes. CFS is a stand alone illness and should be treated separately as such.
- —Guest Jennifer
sleep hygiene doesn't matter for me
- I do some of the things on this list, but there is no perfect answer for me. I do find that getting up the same time every day only makes me worse. I get my most restful sleep in the mornings, and on a bad night, that restful sleep may not happen until 7 or 8 am. If I tried to get up every day at the same time, I end up in more and more pain and get less and less sleep!!
- —Guest ssfamily
Sleep
- I did the sleep study, 81disturbances in an hour. Put a CPAP on me in the lab, instant panic attack. I won't use it, had TMJ surgery, my mouth won't stay shut during sleep. I use a body pillow, tempur pedic pad, a tempurpedic pillow, a small fan for white noise. Recently started Flexeril at night, it helps with restless leg too. I use a heating pad for frozen feet, electric blanket in winter
- —Guest Spookiemom
Gabapentin and Nortriptylene
- My take is that pain was much worse when I couldn't get into the deeper levels of sleep.Once I went on 1 300 mg capsule Gabapentin taken at 10 am and 10 pm and 30 mg of Nortriptyline night only, I got 8 hours per night sound sleep. This has lasted for a number of years now and I am nearly pain free. I don't have any significant side effects either.
- —Guest marcia Hagen
Leo
- Sleep has improved in a family member after having Bioscreen Medical (Melb. Australia) Faecal Microbial Analysis. Science is overgrowth of Streptococcus in gut linked to sleep disorders thus treatment of overgrowth improves gut ecology via less acid production eg H2S Cellular structure is less acid and this also improves neurological symptoms. Personally I improved by lowering my acid producing bacteria and discovering I had fructose malabsorption and gluten intolerance and several other allergies. Had de-sensitization to dust mites and mould, thus sinus health improved.
- —Guest Leonie McFaull
Make sure it's not sleep apnea
- For years I kept telling the doctors I was exhausted. I had a diagnosis of fibro and chronic fatigue. It wasn't until they put me into a sleep study did we find I have sleep apnea. It's important to know if you have sleep apnea or not, because it can cause all kinds of health problems left untreated. I'm very grateful to know.
- —Guest Mary
I sleep
- Five years ago, my doctor sent me to a sleep specialist and I was tested. I have insomnia and he prescribed Xyrem for me. I have slept every since .... when I go to bed. The difficult thing for me to do is when I am feeling the very bests, about 11 or midnight or 2 AM, I have to take the med and sleep. But most of the time, I do; and I sleep very well from 7 t0 10 hours a night. Without that medication, I could stay awake for 30 to 40 hours before I could sleep.
- —alert59
give up coffee!
- It was my crutch and I thought I would not make it through the day without it! However, I decided to give it a try when I discovered my cortisol levels had dropped (coffee stimulates the adrenal gland). I was about to start the Perrin technique treatment, and it was advised to cut out stimulants during the treatment, so with those two factors I bit the bullet and tried. Two days of an excrutiating headache, but it was worth it! I am now sleeping better than I have for years. The change was almost immediate!! I have more energy without it, not less, for sure! I don't miss it at all, and I happily drink decaf if I feel like a coffee. I know it's hard to imagine giving it up...but it could be worth a try. I can't believe the difference it has made for me! I was drinking up to 10 cups a day though. I can't believe I was doing that to myself! all I can say is give it a try :) I was often up until 3 or 4 am! Now I rarely make it past 10PM! I am waking up early feeling much more refreshed!
- —JacquiinSingapore
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