Poll The ME/CFS and Fibromyalgia Sleep Poll

The ME/CFS and FM Sleep Poll

  • Unrefreshing Sleep

    Votes: 58 95.1%
  • Insomnia

    Votes: 41 67.2%
  • Multiple wakings (fitful sleep)

    Votes: 48 78.7%
  • Upside-down sleep (sleep during day/wake during night)

    Votes: 19 31.1%
  • Daytime sleepiness (or narcolepsy)

    Votes: 31 50.8%
  • Alpha intrusions

    Votes: 11 18.0%
  • Restless Leg Syndrome

    Votes: 22 36.1%
  • Early wakening

    Votes: 30 49.2%
  • Sleep apnea

    Votes: 16 26.2%
  • I sleep like a baby

    Votes: 1 1.6%

  • Total voters
    61

Merida

Well-Known Member
I believe that chronic insomnia greatly contributed to the failing of my health. I have tried so many interventions and lifestyle changes, with little to no effect. Medications offer little help. Biofeedback and hypnotherapy, Zero results. Clean Paleo diet, stabilizing blood sugar, eliminating caffeine, nada. Finally with CFS, virtually eliminating all stress by not working, not socializing, not leaving the house much ( to avoid chemical triggers). Meditating daily. Still not sleeping more than three hours without long periods of wakefulness. I recently was diagnosed with Upper Airway Resistance Syndrome after two sleep studies. I've been on a CPAP for 2 months, and still no results. Sleep specialist/ Neurologist now wants me to go to bed at midnight and set alarm for 6 and get up and go outside for 1/2 hour, and stay awake until midnight daily until I am able to sleep through. This is supposed to reset my sleep drive. Then after two weeks I can add 15 minutes, and repeat. Although I can see how this would theoretically work, i don't think it will be doable with CFS? Because time awake in bed is still more restful than being up. However, I will test this out for myself. I truly believe that the problem is In the brain, some form of Dyautonomia, or Limbic dysregulation, or Sympathetic Nervous System dysfunction. Which could be good news if I could figure out how to use the brain's plasticity and rewire the neuropathways to change the brainwaves. If anyone knows how, please share!
HMBCheryl,
Yes, my experience suggests your thoughts are right on target. My sleep is very disordered - for 17 years following neck injury. My sleep regulated - was wonderful! -for a period of 3-4 months when treating with a gifted, experienced sacro-occipital chiropractor about 3 years post injury. He carefully worked on my neck/ pelvis - realigned my atlas, which has been unstable since injury. The atlas/axis alignment is critical for CSF flow and for blood flow to the brain. NUCCA chiropractic also helped - gentle, safe. I have not tried atlas orthogonal treatment.

But my situation seems to be chronic as I have ( mild) scoliosis which can cause the neck vertebrae to rotate and misalign - again affecting blood flow ( especially the vertebral arteries) and CSF flow. A branch of the sympathetic nervous system wraps around the vertebral arteries. So, when the vertebral arteries are pinched or torqued, the sympathetic nerves are also affected. So, if people have neck issues and/ or scoliosis, maybe this is why brains can't respond well to brain-directed therapies?
 

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