Prohealth blog post, by Celeste Cooper, 21 May 2016: “Wake Up Sleepy Head” – Non-Restorative Sleep in FM and CFS

“Are you deprived?”

Disordered sleep is prevalent in both fibromyalgia and chronic fatigue syndrome/ myalgic encephalomyelitis. Sleep deprivation can affect your mental, physical, emotional, and spiritual health. Lack of restorative sleep weakens the immune response leaving us more susceptible to other diseases and disorders.

I understand only too well the effects of insomnia and disordered sleep. Sometimes, many times, despite doing everything right, a road block occurs and we literally lose our map to life. This is why I think it is important, in light of the more recent research, that we all have a sleep study, so integrative therapies can be implemented.

What is a sleep disorder?

Sleep disorders are characterized by different circumstances. Sleep apnea, for instance, is an obstructive sleep disorder and can co-exist with FM and CFS/ME. When this happens a person is deprived of oxygen, which is needed for cellular metabolism and energy.

Disordered sleep, meaning that the normal cycles of sleep are not present, not maintaining sleep, and delayed sleep onset have been consistently reported by fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) patients.

Here is a link from About.com that has a really good explanation of the sleep cycles, though these seem to be changing. One thing we expect in science is that nothing remains the same.

Many of us seldom, if ever, enter deep stages of sleep, so I am including a link regarding slow wave sleep (SWS, which may in the future be defined as one stage).

It seems to me, anecdotally and according to some studies, people with non-restorative sleep, an overlapping symptom between FM and CFS/ME, have a disordered or disrupted sleep cycle. As if that is not enough, there are other co-existing conditions that seem to cluster with both FM and CFS/ME, such as teeth grinding (bruxism), periodic limb movement (PLM), TMJ, sleep starts, and delayed sleep phase (inability to fall or maintain sleep). These can and do play a role in sleep quality, and I am advocating that an assessment for myofascial trigger points, RLS and PLM be included in the proposed diagnostic criteria for FM and a better explanation for “jaw pain.”

Sleep deprivation can impede healing and interfere with our body’s immune system, not to mention agitation and sleep deprivation psychosis. This might explain why so many of us have difficulty fighting off viruses and recovering from trauma, including the micro-trauma we experience in our everyday lives that is repaired during normal sleep.

So what do we do?

According to the Wikipedia link, it seems alcohol (I am assuming not too much, though they don’t state such), THC, SSRIs, and possibly Xyrem can promote slow wave sleep (SWS), and benzodiazepines, such as Klonopin, can inhibit SWS.

I bring up Klonopin specifically because it is often prescribed to help with the periodic limb movement (PLM) seen in the FM and CFS/ME patient. This leads me to conclude that the treatment for PLM may also be an aggravating factor for lack of SWS. Other treatment suggestions for PLM include sleeping pills, anti-seizure medications and narcotic pain killers. On the flip side, I have heard that the addition of a benzodiazepine such as Ativan (Lorazepam) might help with myofascial trigger point relaxation. Don’t give up, continue to work with your doctor to find the right treatment for you. People with hypertension know the trial and error involved in finding the right blood pressure medication; the same holds true for us. Not only are we genetically different, we all have our own grocery cart of co-existing conditions.

If I didn’t learn anything else from this investigation, it is that your best bet is to find a good sleep specialist that understands FM and CFS/ME. You and he/she can work together.

There is something you can do to promote your circadian rhythm, which is
orchestrated by two markers, melatonin concentration and core body temperature. Have a bedtime ritual.

A Helpful Acronym for Sleep Hygiene ©

Schedule bedtime and stick to it
Limit physical activity before bedtime
Use comfort measures
Meditate (count those lambs)
Breathe
Eliminate stress and food (including caffeine 2-3 hours prior to bedtime)
Remember nothing—clear your mind (journal your to-do list so you can let go)

*(Excerpt from the book, copyrighted material)

I hope you will take a minute to stop by Arthritis Today (link below) and leave a comment regarding restless leg syndrome, sleep disruption and assessment in diagnosis of fibromyalgia.

More detailed information of good sleep hygiene is provided in the book.

Harmony and Hope, Celeste

Resources:

Arthritis Today. Restless Leg Syndrome Linked to Fibromyalgia by Jennifer Davis (accessed, 11/18/10)
http://www.arthritistoday.org/news/restless-leg-syndrome-fibromyalgia097.php

Cooper and Miller. Integrative Therapies for fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont, 2010.

A. R. Gold, F. Dipalo, M. S. Gold, and J. Broderick, “Inspiratory airflow dynamics during sleep in women with fibromyalgia,” Sleep 27, no. 3 (2004): 459–66.

M. Irwin, J. McClintick, C. Costlow, M. Fortner, J. White, and J. C. Gillin, “Partial night sleep deprivation reduces natural killer and cellular immune responses in humans,” Federation of American Societies for Experimental Biology 10, no. 5 (1996): 643–53.

M. Irwin, J. McClintick, C. Costlow, M. Fortner, J. White, and J. C. Gillin, “Partial night sleep deprivation reduces natural killer and cellular immune responses in humans,” Federation of American Societies for Experimental Biology 10, no. 5 (1996): 643–53.

T. Kato, J. Y. Montplaisir, F. Guitard, B. J. Sessle, J. P. Lund, and G. J. Lavigne, “Evidence that experimentally induced sleep bruxism is a consequence of transient arousal,” Journal of Dental Research 82, no. 4 (2003): 284–88.

B. Kundermann, J. C. Krieg, W. Schreiber, and S. Lautenbacher, “The effect of sleep deprivation on pain,” Pain Research & Management 9, no. 1 (2004): 25–32.

M. L. Mahowald and M. W. Mahowald, “Nighttime sleep and daytime functioning (sleepiness and fatigue) in less well-defined chronic rheumatic diseases with particular reference to the alpha-delta NREM sleep anomaly,” Sleep Medicine 1, no. 3 (2000): 195–207.

H. Moldofsky, “The significance, assessment, and management of nonrestorative sleep in fibromyalgia syndrome,” CNS Spectrums 13, no. 3 (2008): 22–26.

M. K. Millott and R. M. Berlin, “Treating sleep disorders in patients with fibromyalgia: exercise, behavior, and drug therapy may all help,” Journal of Musculoskeletal Medicine 14 (1993): 25–28.

T. Kato, J. Y. Montplaisir, F. Guitard, B. J. Sessle, J. P. Lund, and G. J. Lavigne, “Evidence that experimentally induced sleep bruxism is a consequence of transient arousal,” Journal of Dental Research 82, no. 4 (2003): 284–88.

A. Korszun, L. Sackett, Lundeen, E. Papadopoulos, C. Brucksch, L. Masterson, N. C. Engelberg, E. Hause, M. A. Demitrack, and L. Crofford, “Melatonin levels in women with fibromyalgia and chronic fatigue syndrome,” Journal of Rheumatology 26, no. 12 (1999): 2675–80.

H. K. Moldofsky, “Disordered sleep in fibromyalgia and related myofascial pain condition,” Journal of Clinical Dentistry, North America 45, no. 4 (2001): 701–13.

H. Moldofsky, “The assessment and significance of the sleep/waking brain in patients with chronic widespread musculoskeletal pain and fatigue syndromes,” Journal of Musculoskeletal Pain 15 Suppl. no. 13 (2007): [Myopain 2007 poster].

H. K. Moldofsky, “Disordered sleep in fibromyalgia and related myofascial pain condition,” Journal of Clinical Dentistry, North America 45, no. 4 (2001): 701–13.

M. L. Mahowald and M. W. Mahowald, “Nighttime sleep and daytime functioning, sleepiness and fatigue, in well-defined chronic rheumatic diseases,” Journal of Clinical Sleep Medicine 1, no. 3 (2000): 179–93.

J. C. Rains and D. B. Penzien, “Sleep and chronic pain: challenges to the alpha- EEG sleep pattern as a pain specific sleep anomaly,” Journal of Psychosomatic Research 54, no. 1 (2003): 77–83.

E. R. Unger, R. Nisenbaum, H. Moldofsk, A. Cesta, C. Sammut M. Reyes, and W. C. Reeves, “Sleep assessment in a population-based study of chronic fatigue syndrome,” BMC Neurology 4, no. 1 (2004): 6.

E. Vazquez-Delgado, J. Schmidt, C. Carlson, R. DeLeeuw, and J. Okeson, “Psychological and sleep quality differences between chronic daily headache and temporomandibular disorders patients,” Cephalgia 24, no. 6 (2004): 446–54.

Celeste Cooper, RN, is a frequent contributor to ProHealth.  She is an advocate, writer and published author, and a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and Broken Body, Wounded Spirit, and Balancing the See Saw of Chronic Pain (a four book series). She spends her time enjoying her family and the rewards she receives from interacting with nature through her writing and photography. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com