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By Erica Verrillo • • February 8, 2014

Note:This survey is still open. Your input is important! You can take the survey HERE.

Last month ProHealth editors Karen Lee Richards and Erica Verrillo conducted a survey on insomnia. Results of the survey can be viewed HERE.

The reason for conducting the survey is that insomnia is one of the most aggravating symptoms affecting patients with fibromyalgia and ME/CFS. Difficulty sleeping is reported in all patients with ME, and is a key symptom of fibromyalgia.

Survey Results
Not surprisingly, 83.7% of a total of 209 patients reported that insomnia bothered them “a great deal.” (These patients principally included those with diagnoses of ME/CFS and fibromyalgia, but also included patients with Lyme disease, migraines, Hashimoto’s disease, IBS and several other illnesses.)
The most frequently reported sleep disorder was frequent waking (80%), followed closely by difficulty falling asleep (69%). Early waking was reported by 46% and phase shifting (falling asleep at dawn) was reported by 42.8 %. A minority of patients, only 15%, reported hypersomnia (sleeping too much). The strong overlap in percentages indicates that most patients suffer from more than one of these problems.
The most common symptom appearing at night was pain (83.3%), which would be expected given the high proportion of respondents diagnosed with fibromyalgia (76.4%). More than half (54%) reported night sweats, and nearly half (46.3%) reported frequent nocturnal urination.
Other commonly reported symptoms included restless legs (45.4%) and the closely related problem of myoclonus (jerking) reported by 41.7%. Nightmares, a strong indicator of sympathetic arousal, were experienced by 38.4%, although a significant proportion (24%) reported having no dreams at all. Roughly one-third of patients reported chills, headache, and palpitations. Sleep apnea was reported by a quarter of respondents as were panic and anxiety attacks.
On a personal note patients also reported having an “overactive mind,” and feeling “wide awake at bedtime!” Leg cramps, drooling, dry mouth, stabbing eye pain, sleep walking, choking, and nausea were also reported.

What works?
Patients reported using a wide variety of treatments and strategies to get to sleep at night. Of the listed treatments, only the benzodiazepines (e.g. clonazepam, brand: Klonopin) were rated as strongly improving sleep (26.4%). (The benzodiazepines inhibit sympathetic nervous system arousal.)  
In the category of mild improvement, meditation ranked highest (39%) followed closely by anti-inflammatories and relaxation techniques (both 36.6%) and lifestyle changes. Commonly used sleep inducers such as antidepressants, gabapentin, antihistamines, melatonin, narcotics and other pain medication, produced a mild improvement in roughly one-third of patients. Hypnotics (e.g. Ambien) produced a mild improvement in only 19%.
Of the treaments that made patients much worse, antidepressants ranked highest (12%). Melatonin, hypnotics, and antihistamines were also reported as making some patients much worse. (This follows a general pattern in the ME/CFS and FM patient populations; those treatments which are the most helpful for one subset of patients are often the most harmful for another.)
There were 58 individual responses to the question “What have you tried?” revealing a wide array of successful bedtime strategies used by patients, from taking a hot shower and watching comedies before bed, to various combinations of medications, herbs and lifestyle changes. 
When asked to choose the single most effective insomnia treatment, no treatment or strategy on the list was chosen by more than 10% of patients. (The highest ranked were hypnotics (e.g. Ambien) at 9%.) 
However, a quarter of the patients described their most successful strategy or treatment in detail, indicating that commonly prescribed sleep medications are less successful than individually tailored combinations of strategies. One person gave a piece of advice to "Enjoy sleep when it comes and not get stressed when it doesn't." (On the other hand, the frustration produced by insomnia was vividly expressed by "Hammer to the head????")
It is clear from reading the individual comments (click on "show more results" then “other”) that patients are diligent in their pursuit of a good night's sleep, and that many have developed techniques through trial and error that provide them with at least some measure of relief.
Read the full results of the Insomnia Survey HERE.

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