The First Symptom: Sleep

Sleep treatments for ME/CFS from Phoenix Rising

“If you don’t get a good nights sleep you’re not going to get well.  It really is that simple”.  Dr. Murphee’

The First Symptom

Chronic fatigue syndrome (ME/CFS) doctors appear to be in universal agreement of the importance of getting as good a nights sleep as possible. Dr. Bested simply says “Restoring sleep is essential for improving your health.

Dr. Bateman, Dr. Bested, Dr. Klimas and Dr. Teitelbaum are all in agreement that sleep is the first symptom they treat. Dr. Bested points out that “Improving sleep, even a little, can make a tremendous difference to a persons……quality of life” and emphasizes “You need to do everything possible to encourage your body to get the best sleep it can every night”.

“The most effective way to eliminate fatigue and pain in CFS/FMS is to get eight to nine hours of solid, deep sleep each night on a regular basis”.  Dr. Teitelbaum

Many of the problems associated with chronic fatigue syndrome such as body pain, fatigue, depression, irritability, headache and gastrointestinal problems are classic symptoms of sleep deprivation. We know that chronic fatigue syndrome is not simply a sleep disorder – its far more complex than that – but it’s also clear that many ME/CFS symptoms are exacerbated by poor sleep.

Studies have shown that a few nights of poor sleep result increases sensitivity to pain and increased fatigue, two key elements of CFS and FM. This suggests that poor sleep could set the stage for both disorders.

Studies also suggest that to 20% of chronic fatigue syndrome patients may not have ME/CFS at all but an identifiable and treatable sleep disorder that could be uncovered during the proper testing (ie a sleep study).

Sleep Series on Phoenix Rising

 

7 comments

{ 7 comments… read them below or add one }

ALICE March 4, 2012 at 2:02 pm

I’m a 70 year old woman. Have had CFS since 1984. Would appreciate any feedback from anyone who has taken D-Ribose and its effects and the same with Nimodipine. Fatigue is my main problem and I have tried many sleep aids. Currently on Melatonin but it leaves me useless during the day. I just found this website so I’m looking forward to finding some helpful information. Thanks

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annette August 11, 2012 at 5:31 pm

Alice,
When I was taking D ribose with Dr.T’s vitamin mix. It really worked for me. Everyone is so different. I would highly recommend trying.
Dr.T has been so Helpful and will email you. He is on FB has wonderful info!!
He also has and had CFS/ME. He looks wonderful and very doing well.
So there’s Hope for all. I want to believe this…
I just went back on his formulas. And magnesium and potassium and Alpha lipoic Acid and Coq10 is so helpful.
One doc wanted me to stop what I was doing. but going back.
I will be trying a new sleep aid this week .I just ordered Fibro Sleep
It has a great combo mix. Praying it works.
Hope this is helpful. Best Wishes…

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Cort August 12, 2012 at 5:53 am

Glad to hear it Annette. We have a section on D-ribose here and a thread on a new study by Dr. Teitelbaum suggesting that it is, indeed, effective for some people here.

Allyson June 2, 2012 at 8:00 pm

Hi Alice I find D ribose to be fantastic for stopping muscle aches. It does not work for every one. some people if gives mor enerygy to but not to me but it was the first thing to stop my continuous muscle adhes after years and years.
I also take vitamin b12 shots IM and they improve my sleep markedly though not consitently. this was despite my b12 levels being normal.
There is a new prolonged release melatonin called circadin that i found better thatn any other kind i have taken.
that and magnesium and potassium supplements and massage indcluding massage chairs I think really help ….though nothing has cured me yet
aquaerobics in the evening always seems to help me sleep better too.

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Stretched July 19, 2012 at 10:09 pm

Hi Alice,

If you’re still following this link I’ll put in my 2 cents fwiw, as I’m about your age.
I’m pretty new here as well but not new to CFS (nor the research and alternative treatments), since ~1985, AFTER a blankety blank vacation at Lake Tahoe. Some respite, huh?

Try Gail Green’s book “Insomniac,” (or her website, which escapes me at present). All is within the pages especially the ‘hard drugs’ chapter.

IAE, sleep has been and is my #1 problem, followed by the usual other syx. Paraphrasing Dr. Dan Peterson, PWC’s (and much of the rx using public) are simply
afraid of using enough medications to get 8 hours of sleep! There’s the front-end
load of getting to sleep followed by the problem of staying asleep, unpinned by
getting the right mix of your favorite poisons so as to not do harm (permanent). IMO,
some short term trade-offs are worth winning the battle for sleep.

I tend to agree with Dr. Dan. I’m currently taking a ‘cocktail’ of pills for sleep at bedtime: 2 Trazadones, 1 klonopin, 2 Ambiens (and more if necessary), plus .5 tab of Percocet if I’m hurting as well. I get ~8-10′ sleep in 2 sessions.

I sometimes get a hangover effect but still function a lot better than getting 3 – 5′
of sleep without medications. I assure you I’ve done the pharmacology on each pill I take, paying special attention to half lives and how and when the active ingredients dissipate over the night (and thereafter); then tried them for me only.

For me, this protocol works. I won’t make it to 75 if I don’t get sleep, forced or not. If I stayed w/in silly FDA guidelines or non-savvy GP recommendations I would never sleep properly – only stay in a constant state of daily withdrawal agitation. So, I’m willing to take the risks since I feel I know my own body.

Please note that this is my opinion only and simply a more extreme alternative. If you choose to try this route and you’re not science nor research savvy find someone who knows pharmacy and try to pick out a combo of sleep pills that might work for you. If you’ve got a CFS savvy MD they’ll likely work with you IF you show them that
you’ve done your homework.

As I write this down it looks a bit scary due to the obvious potential downsides and I don’t generally recommend it and I wish it weren’t necessary. OTOW, I have functioned
where others were incapacitated or in bed=-& Good luck, however you proceed.

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Abha October 3, 2012 at 4:33 am

Hi,
In recent months i have had bad depression(during night)probably due to low Hypoglycemia.In the end I had to see doctors.I was put on drugs like metrazapine/valdoxan/epilim chrono and quetapine.I had to stop taking those yesterday as my condition was worsening.I have had 3 different doctors in 3 or 4 visits to that clinic(all locums).When I get my next visit it will be another new doctor…The NHS/Trusts must really be short of money!I need a source for buying Niacinamide(500mgs) and selenium(200mcgs)in UK preferably.I have used IHerbs in past but was charged an extra 15£(tax/Vat?)on last delivery.Any help will be greatly welcomed.Thanks

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Borntorunsailor November 23, 2014 at 10:22 am

Hi Abha

FYI – many American firms will refund the Tax if you can email them a clear photo of the receipt or even the post office chitty with the demand for payment. Having said this, I am beginning to wonder if any of these bloody awful, bloody expensive supplements will ever help me personally. I can’t remember ever taking any pill that had any beneficial effect on me!! So I am returning to my watered down Gerson Therapy and very light exercise regime, which is the only thing which has really helped my CFS/ME in 20 years!

Since my Naturopathic M.D. put me on the D-Ribose, Acetyl-L-Carnitine, Magnesium, Copper, Manganese and Co-Enzyme Q10, 10 days ago- I have NEVER felt so ill! I have been like the walking deas, a Zombie who can’t get out of bed and can’t stop sleeping! I am about to chuck the whole lot in the bin, unless anyone wants it (for free of course!).

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