Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
The big ones are cortisol and insulin, and unless they did a test 3AM they don't know, since these change all day. Cortisol is 10X higher (normally) in morning than night!
The suggestions here help some people, but they are not aggressive enough.
Questions 1:
When is your insomnia?
can you fall asleep and then wake up, or can you not fall asleep at all.
can you describe what happens at night, and when you can't sleep; energy changes, mood changes, hunger?
There are numerous causes for insomnia and "I can't sleep" isn't descriptive enough.
Coffee isn't always bad. When I wake up all tingly & weird feeling, a cup of coffee helps me sleep. They wouldn't let me have any coffee the morning of my sleep study. I did not sleep right that night.
I kept my old college physics textbook for years. I can't read more than a paragraph in it before I start to get sleepy. It was tough when I needed to read it, but handy later on for sleepless nights. (I still wonder what was in that paper.)
you are well informed.
I'm in the same boat as you regarding sleep.
Sleep is a massive hurdle for me but you're not at fault just as I can't find the remedies because we both most likely suffer as a result of cytokine imbalances being induced in our hypothalamus.
Like you I don't drink alcohol, coffee or tea, or soda and that's a good start. Doctors prescribed anti-depressants for depression and sleep disorder but like you they make me sicker too. I only take Rivotril which seems to have a calmative effect and may even help me get to stage 4 sleep whenever I can get to sleep.
http://www.prohealth.com/library/showarticle.cfm?id=3154&t=CFIDS_FM
Like you too I have had sleep studies done. Nil REM sleep at night but in deep REM sleep in the day within 5 minutes. Weird hah.
Like you I have tried sub-lingual melatonin also pure melatonin 3 mg capsules, It works very well in the beginning then over about a month or two then it totally stops working.
Like you I know a lot about sleep hygiene, the sort of generic stuff a sleep hygiene nurse spouts about. Don't forget not many sleep hygiene nurses/technicians or General Practitioners know much about the Patho-physiology of chronic fatigue syndrome, let alone the intricacies of cytokine imbalances in CFS'ers or their causes.
http://en.wikipedia.org/wiki/Pathophysiology_of_chronic_fatigue_syndrome
I'll start with the remedies I already know because the science is heavy..
Eliminate the foods that give you IBS-d if you suffer from it.
Have water beside your bed so you can fall asleep after a drink without getting up.
Use ear plugs and or a mask if you have to.
Black out your bedroom to optimise the ability to get into a deep sleep.
Sleep whenever your body sais it can go to sleep. Just get up and go to bed and sleep as long as you sleep. For 6 years I've tried to fight my 'out of wack' 'sleep clocks' in our circadian clock gene expression but it's an uphill battle.
If you still work then have your breakfast facing into the sunshine. Morning sunlight received by our eyes tries to reset all our sleep clocks. Calcium/magnesium at night is good.
Lastly go easy on yourself. Seek not to beat yourself up about not being able to sleep at "Normal "times. Optimize sleep whenever you can sleep.
I have studied the pathways that CFS effects and the effects on the Hypothalamus, HPA axis and the sleep triggers such as Interleukin 1b, Interleukin-6 (IL-6) Interleukin-8 (IL-8) Tumour Necrosing Factor alfa and the proinflammatory cytokine interferon gamma IFN- and their effects on sleep quality and sleep clocks.
Basically there are two very common problems for CFS'ers.
1) Our 'sleep clocks' in our circadian clock gene expression.
2) There is the problem associated with 'quality of sleep'.
1) In Short our sleep clocks in our genes (circadian clock gene expression in SCN neurons found in every organ in our body) take their cue from the main hypothalamus sleep regulator. When its damaged by TNF alpha IFN-gamma can mess up the body's sleep clocks and it becomes ver hard to go to sleep.
For further info;
The proinflammatory cytokine interferon (IFN-gamma) is an immunomodulatory molecule released by immune cells. It was originally described as an antiviral agent but can also affect functions in the nervous system including circadian activity of the principal mammalian circadian pacemaker, the suprachiasmatic nucleus. IFN-gamma and the synergistically acting cytokine tumour necrosis factor- acutely decrease spontaneous excitatory postsynaptic activity and alter spiking activity in tissue preparations of the SCN. Because IFN-gamma can be released chronically during infections, the authors studied the long-term effects of IFN-gamma on SCN neurons by treating dispersed rat SCN cultures with IFN-gama over a 4-week period. They analysed the effect of the treatment on the spontaneous spiking pattern and rhythmic expression of the "clock gene," Period 1. They found that cytokine-treated cells exhibited a lower average spiking frequency and displayed a more irregular firing pattern when compared with controls. Furthermore, long-term treatment with IFN-gama in cultures obtained from a transgenic Per1-luciferase rat significantly reduced the Per1-luc rhythm amplitude in individual SCN neurons. These results show that IFN-gamma can alter the electrical properties and circadian clock gene expression in SCN neurons. The authors hypothesize that IFN-gama can modulate circadian output, which may be associated with sleep and rhythm disturbances observed in certain infections and in aging.
http://jbr.sagepub.com/cgi/content/abstract/23/2/150
2) There is the problem associated with quality of sleep.
Vicious cycles down regulated blood gasses such as Hydrogen sulphide H2S and Nitric Oxide NO can affect both IL-1 beta and tumour necrosis factor-alpha (TNF-alpha), which in turn can seriously affect our sleep stages and the essential ability for us CFS'ers to get to stage 4 deep restorative Rapid Eye Movement REM sleep. That's why we can be so jolly exhausted as soon as we wake up.
For More info;
Interleukin-1 beta (IL-1 beta) is a well characterized sleep regulatory substance. So is tumor necrosis factor-alpha (TNF-alpha)., To study receptor mechanisms for the sleep-promoting effects of IL-1 beta, sleep patterns were determined in control and IL-1 type I receptor knockout (IL-1RI KO) mice with a B6x129 background after intraperitoneal injections of saline or murine recombinant IL-1 beta. The IL-1RI KO mice had slightly but significantly less sleep during the dark period compared with the controls. IL-1 beta dose dependently increased non-rapid eye movement sleep (NREMS) and suppressed rapid eye movement sleep (REMS) in the controls. The IL-1RI KO mice did not respond to IL-1 beta. In contrast, the IL-1RI KO mice increased NREMS and decreased REMS after administration of tumor necrosis factor-alpha (TNF-alpha), another well characterized sleep-promoting substance. These results 1) provide further evidence that IL-1 beta is involved in sleep regulation, 2) indicate that the effects of IL-1 beta on sleep are mediated by the type I receptor, and 3) suggest that TNF-alpha is capable of inducing sleep without the involvement of IL-1.
http://www.ncbi.nlm.nih.gov/pubmed/9530230
Hope something here helps.
Its 3.34 AM as I write cause I cant sleep but I found somthing good to do with my lack of sleep, thanks to your question.
I'm really glad you asked it because it gave me the opertunity to asymilate some of the referances I have come across over the last few years.
Martin L. Pall's (PhD Professor Emeritus of Biochemistry and Basic Medical Sciences at Washington State University and Research Director, The Tenth Paradigm Research Group) book Explaining 'Unexplained Illnesses': Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, Gulf War Syndrome was a good help in me understanding CFS.
Dr. De Meirleir's (Professor of Physiology, Pathophysiology, Internal Medicine and Sports Medicine at Vrije Universiteit, Brussels, and Clinical Professor, University of Nevada Medical School, USA.) .book "CFS a biological approach" helped me too.
http://www.prohealth.com/library/showarticle.cfm?id=8489&t=CFIDS_FM
I am one of his patients.
Cheers
Ali5tair
Back in the eighties, before I was diagnosed, my family doctor referred me to an internal medicine doctor for my insomnia. His prescription for my insomnia was to buy a coffee maker, even though I never drank coffee my whole life, and drink a cup of strong coffee every half hour all day long. He said that would ensure that I would get a good night's sleep.
He charged me $100 for that professional advice.