June 2020

Painsomnia – Let’s Talk About Sleep, Baby

It’s 4:16 am. I’m awake. Have been for hours. Yes, Roy is snoring. No, it’s not the reason sleep eludes me.

The blankets have been on, off, half on…maybe if I stick a foot out? Nope. Right arm? Nope. My body temperature won’t regulate.

It’s not the reason I’m awake.

My thoughts whirl. Anxiety spikes. COVID-19. Black lives matter. Haven’t posted a blog in weeks. Are my sons happy? Should we get a dog? To build or not to build? Is the retirement travel I envisioned still a possibility? Am I a bad daughter? How am I going to lose weight working ten-hour days? Should I TikTok?

Now What?

I try deep breathing. Nope. Meditation. Nope. Sheer force of will. Nope. My brain will not stop.

It’s not the reason I’m still awake.

I adjust my half of the bed. Head up. Nope. Feet down. Nope. How about the reverse? Nope. Maybe if I try every possible up/down combination? Nope. I toss. Nope. I turn. Nope. Cross my ankles. Nope. Uncross my ankles. Nope. I can’t get comfortable.

I can’t get comfortable…that’s the nice way of saying I can’t sleep because of the amount of fucking pain I’m in.

PAINSOMNIA.

It’s real, and it’s a pain in the ass (literally).

Welcome to Hell...Please Enjoy the Ride

A pain spike is one thing. Add in exhaustion due to sleep deprivation, and we’re talking a whole other depth of  Satan’s paradise. We’re talking the subbasement of hell. Worse. We’re talking the furnace room of the subbasement of hell. All dark and dinghy. Cobwebs in the corner. Layers of crud and dust covering the floor. Hot, stale air. A dead rat in the shadows.

It’s the kind of place you don’t want to be stuck in for too long.

Problem is – painsomnia and I have a history, and I know I’m gonna be here for a while. Yep, might as well stock the mini-fridge, cause this pain train is going nowhere fast.

On a scale of 1 to 10, my pain level is about a 22.59 right now. Not kidding. This is ridiculous. The bones of my feet feel broken. My left ankle refuses to bend. My right knee pops when I walk. Both legs have shin splints and permanent calf cramps. My left hip gives out on the regular. My right hand aches. I can’t lift my left arm because my shoulder is inflamed (bursitis). My back is spasming. My neck mobility is limited. And yeah, to top it off, the ringing in my ears is louder than usual – to the point that I’m having a hard time hearing.

The depths of hell is an apt description.

Although I’ve suffered from many sleepless nights over the years, I didn’t make the connection to my chronic pain until I came across the term Painsomnia. Coined by members of the chronic pain community, the word perfectly describes the cycle of pain, leading to lack of sleep, leading to more pain. It’s a vicious downward spiral, and it’s hard to reverse.

I'm Not Alone...

Did you know, 8 in 10 chronic pain sufferers describe frequent episodes of poor or lost sleep? 8 in 10! That’s a lot of people roaming the halls at night, or, and this is much more likely, connecting with fellow Painsomniacs (that’s not a word – I just made it up – I even Googled it) on one of the #painsomnia social media hashtags.

Furthermore, did you know that many chronic pain sufferers (myself included) feel their pain level increases at night! This phenomenon is due to a couple of factors:

  • our bodies naturally produce lower levels of the anti-inflammatory hormone cortisol during periods of rest
  • we tend to have fewer distractions at night; therefore, attention to pain levels (not the pain itself) may increase
  • staying in one position for an extended period can cause joints to stiffen (hello fellow Ankylosing Spondylitis sufferers), even small movements during sleep can cause pain
  • when we’re tired our brains lack the ability to dampen pain signals, so our pain is perceived as worse during the wee hours.

You Did What Now?

Whether we simply perceive our pain as worse at night, or our pain level actually increases, there are many recommended practices to follow to enhance sleep.

None of these will come as a surprise:

  • Exercise daily
  • Avoid consuming caffeine in later afternoon or evening
  • Avoid overeating before sleeping
  • Avoid drinking alcohol before bedtime
  • Establish a relaxing bedtime routine
  • Try taking a warm bath before bedtime to ease sore joints
  • Turn off electronic devices before bedtime
  • Keep your room a comfortable temperature
  • Limit exposure to bright light
  • Try meditation or deep breathing
  • Make sure your mattress and pillow are right for you
  • Consider natural or herbal remedies

So great, you’re doing all of the above, and you’re still awake. Painsomnia has sunk its teeth in deep, and you’re fucked. Yep, been there. See ya next month when your flare-up subsides, and you can sleep for more than two hours at a time.

Or…

Now that you know painsomnia is a real thing, you can do what I did. For the first time in twenty-five years of living with chronic pain, I called my doctor. Described my symptoms. Discussed what needed addressing to get me back to sleep mode. In my case, it was the leg cramping and shoulder pain keeping me awake at night. She prescribed a muscle relaxant.

I took one pill. One. The leg cramps disappeared, and the shoulder pain became tolerable. I slept Wednesday night. I slept Thursday night. And now, I’m back to my regular ole pain levels. Thank baby Jesus!

My point is – if a pain flare is keeping you awake and you haven’t spoken to a medical professional about it – do it. DO IT NOW! It could very well mean the difference between a good night’s sleep and prolonged painsomnia suffering.

Wishing you happy dreams!

Until the next blog – peace out pain sufferers.

Current pain level 8/10.

Sharing is Caring!

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Writing for The Mighty!

Hey there, Sharing is Caring Members!

It’s been a while. Not gonna lie. I’m struggling a bit these days with completing anything outside of work. My pain levels are high, and my personal balance is out of whack.

I have good intentions, just no follow through at the moment, and that’s okay. I’m working 60-70+ hours a week, something has got to give.

A lot of somethings.

Sadly, writing for the blog has been one of those things.

However, I was invited by The Mighty to write an introduction for their Fibromyalgia news letter which was super exciting for me. It was also a challenge to keep my ramblings down to 150 words!

Sharing my introduction with you below and encouraging you to check out the featured story by Samantha Moss – it includes an excellent pain visual and description chart.

Until the next blog – peace out pain sufferers.

Pain is Personal. How Do You Perceive Your Fibromyalgia Pain?

Pain. All-day, every day? Worse in the morning or the afternoon? Sharp? Shooting? Stabbing? Aching?

Pain is personal — how we perceive it and our tolerance to it is as individual as it gets.

For many, the struggle to describe their chronic pain is as real as the pain itself. To make things harder, add on a cloak of invisibility. There’s no wound to see. No cast to draw on. No Snoopy bandage to ease the hurt.

Whether you rely on words, visuals or a pain scale, talking about how your pain feels and how it affects you is critical to getting the help you need. In my case, recording my symptoms and better describing my pain led to the discovery of a second autoimmune disease.

How about you? How would you rate your fibro pain before, during and after a flare, and what method do you use to describe it? Check out this week’s featured story — it may inspire you to come up with a new creative way to rate your pain.

You can read more of Edith’s work on The Mighty by clicking here. Visit her website by clicking here. You can also follow her on Instagram here and “like” her Facebook page here.

💡 Today’s Takeaway

Finding a way to describe your pain may be hard, but it’s worth it!

Stay Mighty,
Edith

Stories You May Need Today

Current pain level 8/10.

Sharing is Caring!

Writing for The Mighty! Read More »