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Painsomnia” is a term used by people with various forms of chronic pain and illness to describe insomnia that is fueled by pain. For people who don’t live with a chronic illness or pain condition, you may be able to relate by remembering the worst flu you’ve ever had.

Remember that time that you couldn’t sleep because EVERYTHING hurt, even though you’d taken medication for your symptoms and to help you sleep? You remember? OK, good. Now imagine it was at least ten times more intense.

People with chronic pain live this night after night. It can become a harrowing cycle, as lack of sleep can ramp up pain levels, and increased pain level means another wide awake night. Even when we take our medication, even when we do everything “right.” Still wondering what it feels like? Let me take you through it hour by hour…

10 PM – This is my normal “bedtime” or at least the time at which I try to go to bed most nights. People with migraine do better with a consistent sleep schedule. Additionally keeping regular hours, in theory, helps your body recognize when it’s time for sleep. Still “bedtime” is in quotes here because I am usually awake well past this time.

11 PM – If I am still tossing and turning at 11 PM I get up and take any medication I think may help. This could include medications for pain/inflammation and/or nausea, a muscle relaxer, and an antihistamine to help with migraine – sometimes this helps me sleep, but it’s not the intended purpose of the medication. I may also seek out ice or heat. Then back to bed. I may try to meditate to distract me from my pain and induce sleep.

12 AM – Meditation is not enough tonight. At this point I allow myself a distraction. Reading is my preference, but if I’m not well enough to read I will go down stairs (so as not to wake my husband) and turn on the TV. As I walk down the stairs every joint snaps, crackles, and pops. I lean against the wall and drag my feet to feel for each step, careful not to fall (again).

1 AM – Although the medication may have dulled my symptoms, I still hurt quite badly. At this point I’m exhausted (if I wasn’t earlier on), but sleep still evades me. I wonder if the government could somehow simulate this unique form of torture.

2 AM – I’m now too tired to stop myself from pondering “WHY ME?” – rational me knows there are people all over the world have it worse, but we’re way past rational at this point.

3 AM – I start to wonder how many hours I have before I have to be awake. A quick check of the calendar reminds me I have two doctors’ appointments and physical therapy scheduled tomorrow. At most I can get 5 hrs of sleep – there won’t be time for a nap either.

Thankfully, I wasn’t kept up until four or later, but it’s happened before and I’m sure it will happen again. I ended up getting approximately 4.5 hours of sleep on that night, and still had to be able to make it to my doctor’s appointments the next day. That is just one reason that a life with chronic illness/pain can be difficult. Not only do we experience pain and fatigue more often than most, but we are frequently running on just a few hours’ sleep as a result of the beast we call painsomnia. I hope this post helps people who have never experienced chronic pain or illness to understand this facet of our lives a little better!