It’s a word that has made it into the Urban Dictionary but not into PubMed. Very simply, it’s the inability to sleep because of chronic pain. It’s kind of a no-brainer to me. Anyone with any sort of pain is going to have a hard time going to sleep. The problem is when that pain interferes every darn night. That’s painsomnia. People with Restless Legs Syndrome can definitely relate, and a lot of people with fibromyalgia have at least a touch of Restless Legs. After busy, strenuous days, I’ll lay in bed unable to sleep but unable to function, pointing and flexing my toes as my muscles demand, clenching and relaxing my calves and thighs, until I fall asleep.

I’m lucky. Once I had a sleep study done and discovered a severe case of obstructive sleep apnea and got on a CPAP machine, my nocturnal pain was greatly reduced. I had high hopes at the time that sleeping at night would solve the fibro problem, but was disappointed.  At least, however, I can get to sleep.  It’s a big step forward.

I am wondering about some things relating to painsomnia.

1. Is there a hormone or chemical that is released during sleep that reduces sensations in the sleeping person? I know sleep is restorative and healing, but you have to get into the right stages of sleep for that restorative, healing benefit.  To get into that stage, sometimes pain has to be muffled. Is there a hormone that does that and are fibro patients missing it?
2. One of the things I was worried about when I started sleeping all night was that I was getting up to go to the bathroom (peeing like a racehorse – TMI, sorry) about five times a night. I was afraid I’d end up wetting the bed if I got into too deep a sleep. Incontinence is on par with not sleeping in my book.  The doctor assured me that when I slept deeply, my body would release a hormone that quenched the need to urinate.  It did.  Is that hormone related to painsomnia?  Is that why so much of my nocturnal pain is diminished after CPAP?
3. I know there are psychological factors to insomnia. When I can’t sleep because of pain, and yes, I still have all-nighters even with my CPAP strapped to my face, often it’s related as much to my anxiety about not sleeping as it is to the actual pain keeping me awake. With fibro and the hypervigilance that we deal with, how much of painsomnia is related to the anxiety and stress of the situation?

Quick survey, if you’re interested:  How many have gotten sleep studies?  How many are on CPAPs?  How many have benefited or not from CPAP?  Please comment if you would…..