As long as I can remember, I'd wake up at 3 am with my head spinning, unable to fall back asleep. Some nights I'd have so much trouble falling asleep, I'd run into my parents' room close to tears, wanting so badly to sleep. In high school, it got worse, and occasionally I'd wake up with my heart racing so fast I thought I was going to have a panic attack (although with no other panic symptoms). A few times I even vomited for hours until passing out. I remember waking up once crumpled backwards on the bathroom floor, every joint aching, and jumping when I saw my reflection -- the capillaries in my eye sockets had popped from the pressure of dry heaving, leaving me with polka-dotted black eyes. This persisted periodically through college, up until a few years ago when I could no longer fall back asleep after the 3am wake up, for days on end.
I've learned recently that our bodies naturally release histamine around 3am, so people with MCAS often experience the 3am insomnia phenomenon. I haven't seen any evidence other than hearing it from specialists, but I haven't experienced it since almost immediately after I began MCAS treatments.
Insomnia is terrible. It makes everything else feel more extreme, makes emotional regulation almost impossible, and job performance laughable. It is quite literally torture. I am so glad to almost never experience insomnia anymore, to be laying awake knowing I need to sleep, but unable to settle my body or mind.
This piece isn't about insomnia, but rather painsomnia.
Throughout my life, as the insomnia went up and down, I also had other issues -- difficulty falling asleep because my back, neck, or arms hurt; waking up a million times at night because my arms and legs were in pain, tingly, numb, or some combo. I remember being 12 or 13 and waking up with terrible pain in my shoulder from having subluxed it while sleeping, but I couldn't move my arm because it was so numb. I did a weird flopping move (like Wesley in Princess Bride after being revived) to fling my arm back over. When the pain was finally gone, I was fascinated to find that touching my numb hand with my other hand was a very strange experience; it felt like touching leather, or a fake rubber hand. I remember rubbing, flicking, and squeezing the hand with a combo of fascination and revulsion until I eventually got some feeling back and drifted off to sleep.
As my joints deteriorated these last few years, the pain has increased tremendously. What was once sporadic pain in a few joints became near-constant pain in neck, back, shoulders, hips, and SIJ, as well as periodic pains in my head, jaw, ribs, wrist, ankles, and elbows. There were very few nights during those years in which I didn't groan or cry out in pain at some point in the night. I had difficulty falling asleep and woke up from the pain multiple times a night. I became a champ at falling back asleep after these interruptions, but my sleep quality was pitiful, and I found myself constantly exhausted. I fell asleep while driving, at work, exercising, hanging out with friends...
In case the joint pain and frequent subluxations weren't enough, I also developed inflammation pain from MCAS, which basically makes my entire body achey and tender, like when you have a very bad flu. Lying down, even on the softest memory foam mattress topper, can feel like someone has repeatedly punched me on whatever side I happen to be laying. Added to that, I then misaligned my neck so badly that it stretched out the ligament holding my vertebrae in place. The result was that no matter which way I faced or how I propped up my head with a million pillows, something would slip out of place. This would cause pain, but also nausea, dizziness, palpitations, and the horrible feeling that I can't breathe or swallow properly.
As I'm sure you can imagine, falling and staying asleep under these conditions is pretty darn ridiculously near impossible. I have thankfully gotten most of the pain under control through MCAS treatments, diet, PT, and strategic taping/bracing. My neck still flares up the week before each period (yes, joint laxity and hormones are linked!), my shoulders sublux almost every night, and I still periodically wake up with painful or numb arms, but overall it's much better! I have also learned how to use a combo of three or four pillows (one must be memory foam and one feather) to make sure my hips, neck, shoulders, and back are in the right positions. I move around a TON (I'm sure I'm a terrible bed partner) so that one joint isn't bearing the weight too long, and I listen to Insight Timer meditation tracks as I drift off. So I'm doing pretty well these days!
Painsomnia is real for so many people, whether because of EDS, MCAS, fibromyalgia, or any other chronic pain. It's effects can't be overstated -- you know how bad you feel after a terrible night of no sleep? Now imagine that every night. Plus constant pain. It's a terrible feeling to be exhausted and as soon as you're about to drift off, something hurts and sends your fight-or-flight response to wake you. So try to be kind to your fellow spoony if they are grumpy in the morning. It may have been a long night.