The question Dr. Bateman tackled in her recent Solve ME/CFS Initiative video was “Can Fibromyalgia and ME/CFS research help you sleep?” (Section in [ ] represent my additions.)
Sleep, of course, is one of the biggies in ME/CFS and FM — one of the four legs of the table Dr. Bateman focuses on in her practice. She’s gone to great lengths to improve sleep, stating (perhaps with a little sigh), “In the last twenty years I have tried everything possible to help my patients sleep”. It’s a key issue – and Dr. Batemen is talking on it. Why now?
Because as part of her work for the IOM panel, Dr. Bateman dug deeply into a lot of the chronic fatigue syndrome research and that’s prompted some new ideas on these disorders and sleep.
First she tackled some basics.
Medications That Disrupt
First came a quick overview of medications – some in common use in the FM and ME/CFS communities – that can disrupt sleep. They include stimulants (caffeine, drugs), antidepressants, opioids, benzodiazepines, dopamine increasing drugs, decongestants, and taking multiple drugs. If you’re taking any of these and experiencing really poor sleep, they could be contributing (not causing), but contributing to it.
Sleep Disrupting Conditions Associated With FM and ME/CFS
Some conditions often found concurrent with FM and ME/CFS also make it difficult to get into restful sleep. Pain, for instance, can make getting to sleep and staying asleep more difficult. Frequent urination, a snoring spouse, pets that wake you up, and racing thoughts are all outside conditions or problems that can be addressed.
Primary sleep disorders such as sleep apnea, restless leg syndrome, narcolepsy, etc. are common enough in ME/CFS and FM for Dr. Bateman to assert that everyone with these disorders should have a polysomnography or sleep study done. If they are found, that could be some good news, because they are treatable and once they are treated you should feel better.
- Check out how one person’s life was turned around by a sleep study.
The ME/CFS and FM Sleep Gestalt
Polysomnography studies display a general sleep pattern which, if it is not diagnostic, is still very different from what is seen in sleep disorders. In general, people with ME/CFS and FM have delayed sleep onset, experience fragmented sleep, increased light sleep (increased alpha waves), and decreased deep sleep (decreased delta waves).
This is the ME/CFS and FM sleep gestalt. Dr. Bateman felt clues to the sleep problems must lie in the scientific literature – not just in the sleep studies, but in other studies that explain what’s going on this illness. Back into the literature she went to try and understand sleep and ME/CFS and FM.
The new insight Dr. Bateman brought in this talk was her realization that the research findings reveal fundamental problems that are guaranteed to disrupt sleep. ME/CFS and FM are not sleep disorders per se – they are disorders that naturally disrupt sleep. The best way to address sleep in ME/CFS and FM is to address these core problems.
This is why, while they can be helpful, drugs rarely if ever return an FM or ME/CFS patient to fully refreshing sleep. The only thing that will do that is fixing FM or ME/CFS.
A Very Sensitive Nervous System
Research has shown that central sensitivity, which occurs when the brain interprets normal stimuli as being painful, is present in FM. Since increased pain levels can cause increased alpha waves, the pain people with FM are experiencing could easily be contributing to their difficulty sleeping.
While central sensitization is not something researchers commonly associate with chronic fatigue syndrome, the symptoms of a brain overwhelmed by stimuli (odors, bright lights, noises) are clearly present.[An FM study recently indicated why a similar sensitization to stimuli may be occurring in FM. See Sensory Distress: The Other Side of Fibromyalgia. Another study indicates the brains of ME/CFS patients have trouble disengaging themselves from innocuous stimuli. Long after healthy people’s brains have checked out the stimulus, determined it’s not relevant, and moved onto something else, the brains of ME/CFS patients continue to keep an eye on it. That’s not a recipe for rest.]
The fact that pushing an ME/CFS patient too far causes their stimulus overload to get worse indicates central sensitization plays a key role in both ME/CFS and FM.[Dr. Bateman’s conflating of the “wired and tired” phenomena and central sensitization suggests an overwhelmed nervous system that lacks the resilience to calm down is present. An “exhausted” nervous system was believed to be present in neurasthenia – probably the name for FM and ME/CFS in the first part of the 20th century.]
Dr. Bateman: Can ME CFS and Fibromyalgia Research Help You Sleep? The Solve ME/CFS Initiative Webinar
Treating Central Sensitization to Improve Sleep
The sleep problems present (fragmented sleep, inability to attain deep sleep) are suggestive of a nervous system that’s too on edge to calm down enough to attain deep sleep. What to do about it? Dr. Bateman suggests some basic approaches to down-regulate the central sensitivity present and quiet those intrusive alpha brain waves.
- Pacing – Since too much activity puts the central nervous system into overload, you should over-exert yourself as little as possible; that is pace, pace, pace to avoid putting yourself into a PEM state that’s going to disrupt your sleep.
- Wind your system down before sleep – by putting yourself in a quiet, dark environment. Since bright screens activate your brain, looking at a computer screen or TV right before sleep might not be a good idea.
- Take calming drugs before sleep, if necessary – Drugs that calm the central nervous system such as Neurontin, Lyrica, low dose naltrexone, Klonopin, low dose amitriptyline, doxepin elixir, and cyclobenzaprine can help. Notice that none of these are sleep aids, per se – they are all calming agents that help relax an edgy brain.
Autonomic Nervous System
All the studies suggest that the “fight or flight” mode of the autonomic nervous system (the sympathetic nervous system) has been turned on in both ME/CFS and FM. They indicate that even during sleep the sympathetic nervous system is revving away producing increased an heart rate and decreased heart rate variability (HRV).
Reduced heart rate variability – Your heart rate should normally be shifting continuously up and down in response to what’s happening in your body, but in ME/CFS and FM it tends to lack flexibility (low HRV), and instead appears to be driven by an unrelentingly turned-on sympathetic nervous system.[Low HRV is not good news; it’s associated with, among other things, increased mortality. An Australian study failed to correlate any traditional sleep measures (sleep architecture and others) with poor sleep quality, but found that reduced heart rate variability did. It appeared that autonomic nervous system dysfunction was preventing ME/CFS patients from relaxing into deep sleep.]
Rebalancing Autonomic Nervous System Functioning
What are we to do? Do things that turn off the fight or flight response, reduce norepinephrine levels, and allow the “rest and digest” or “parasympathetic nervous system” to calm the body and mind enough for you to enter into deeper sleep.
Dr. Bateman recommends deep breathing or relaxation exercises and/or yoga. She noted that long deep breaths with longer delayed exhalations release chemicals from the parasympathetic nervous system that turn down the SNS. [Dr. Cheney and most respiratory therapists recommend long inhales followed by even longer exhales with the lips pursed to increase oxygen level.] [Fred Friedberg, a psychologist with ME/CFS who has benefited greatly from meditation practices, recommends doing simple meditations before sleep to help you enter deeper sleep. He has found patients who employ these techniques can sometimes cut back or even eliminate their sleep meds.
If something is occupying your mind before you sleep, Johannes Starke recommends writing it down on a piece of paper and telling your brain not to worry about it anymore. Envisioning yourself in a beautiful safe place may help as well. I find the simply stating the word “relax” again and again can be helpful. All these practices, of course, take practice to work. ]
The High, High Sympathetic Overdrive Subset
Dr. Bateman has found that patients with really high levels of sympathetic overdrive such as POTS patients, in particular, can benefit from very low-dose propranolol (LDP) (10-20 mg). She uses LDP to reduce the heart rate and help patients relax, allowing them to go to sleep.
At Home Test of Sympathetic Overdrive – when you lie down if you feel your heart pounding in your chest — beating hard, not necessarily fast – Dr. Bateman suggests you’re probably in the sympathetic nervous system overdrive category and might want to try the LDP protocol before you go to sleep.
HPA Axis Contributions to Poor Sleep
Cortisol helps the body release energy. You want to have more cortisol in the morning to get your energy flowing, and less at night to allow you to calm down. People with ME/CFS, though, have reduced cortisol production in the morning (trouble getting started) and increased cortisol at night (trouble going to sleep). (How much better it would be to have higher cortisol levels in the morning (raring to get at the day!) and lower cortisol levels in the evening (sleep like a rock).
The problem does not appear to be in the adrenals or pituitary, but in the hypothalamus – the upper part of the HPA axis that regulates hormone production (thyroid, cortisol, vasopressin, estrogen, progesterone) in the body. Receiving information on hormones, electrolytes, temperature, blood pressure, light, and emotions, Dr. Bateman called the hypothalamus the control center of the brain. It also happens to regulate autonomic nervous system functioning.
How do you help the hypothalamus help you sleep? It’s about reducing HPA axis activation and that means staying even-keeled emotionally, reducing light levels, being properly hydrated, etc. before you sleep.
Drugging Oneself to Sleep
Then there’s the drugging yourself to sleep option. Dr. Bateman warned against the idea that fixing the sleep problem in ME/CFS and FM will cure either disorder. Taking sleep drugs may help with your sleep but will not cure these disorders because they don’t address a) the underlying causes (central sensitivity, autonomic and hypothalamic dysfunction) and b) they often leave one tired the next day. Sometimes they are necessary, though.
Using medications skillfully
- If you can’t get to sleep – use low dose short-acting sleep drugs.
- If you have frequent awakenings – use longer-acting drugs in low doses.
- If you have early awakening – the meds you’re taking to help you sleep may be losing their effectiveness from overuse.
From the Question Period
Diet and Sleep?
Eating carbs before sleep? Some people do well eating carbs before sleep others get worse. Generally, avoid heavy meals before bed. You don’t want, Dr. Bateman said, your body working on anything – including digestion – while you’re asleep.
Melatonin regulates day/night cycles. If you don’t get outside, your brain can get confused about day/night cycles. You want to have light exposure and dark at their natural times. Melatonin can restore that, but it probably works the best when it’s not used all the time. She said it’s a hormone, but it’s “pretty safe”.
Supplements that help you to relax and prepare for sleep are great. Just don’t overdo.
Except for the propranolol suggestion, there’s nothing new here treatment-wise. Instead, Dr. Bateman focused on research findings outside of sleep studies that help explain why sleep can be such an issue in ME/CFS and FM. Those findings led her to focus on basic approaches to sleep we all know about, but probably don’t put into practice as much as we should.
We are where we are. The big answers to sleep and ME/CFS and FM will require more research. With that in mind we await the publication of the most exciting studies, in my mind, to come out of the Stanford ME/CFS Symposium – the Zinn studies.
Dr. Bateman suggests that everyone with ME/CFS or FM get a sleep study done, but our recent sleep survey found that most people (about 68%) had not done one. Almost 35% of the people in the survey, however, indicated they had been diagnosed with a sleep disorder that a sleep study would have picked up.
That suggests a significant number of people who have not had a sleep study may have an undiagnosed sleep disorder as well as FM or ME/CFS.
The survey also indicates that most people have tried good sleep hygiene practices. Some (6%) find them very effective or somewhat effective (32%) but most (62%) found them not very effective.
The full results of the sleep survey are coming up shortly.