Friday, February 17, 2017



  Last night was another Battle Royal with pain. Pain so heavy, pain so strong, pain so unpredictable that there was no way to be "comfortable" - I use this term quite loosely- for long enough to sleep. When sleep does come it does not last long. Sleep for an hour- awake for a couple of hours- back to sleep for a few- awake again-

I call nights like that Pretzel Nights.

A Pretzel Night is one where the periods of sleep have several big holes in them. Doze off for a bit. Awaken in agony. Do something to distract yourself until such time comes as the pain stuff kicks in or the attack eases up. Doze off again. Awaken in agony. Repeat until you are finally able to get enough sleep to get up and start the day.

 Since I am in an autoimmune flare-up life is difficult and solid deep sleep elusive.  Waking up soggy from night sweats is such a problem that I have a stack of T-shirts and PJ bottoms to change into as needed.  Some nights I change three or more times. Other nights- a really good night- I don't get so soggy that I need to change.  Waking up soggy just adds another layer of misery. You don't want to have to change your bedding at 3am because it's soggy. Changing your bed clothes is hard enough.

Add to that waking up dizzy, confused and nauseous. It's not a pleasant image is it? Imagine waking up that way several times a night. Don't forget the pain.

It's the pain that wakes you up into the hell of confusion, vertigo, nausea and sogginess.

The body is wracked with pain. To call it anything less than agony would be to sugar coat it. Some parts hurt more than others. You may awaken gasping for breathe. You may think that you are having a seizure of some kind. You may think that you are dying. But all that is happening is that you are just waking up.

You have to hang onto the bed and wait, focus of breathing through it all and relaxing the body until the terrible spasms of awakening pass and you can move.  You have to move your body slowly. If you move too fast a muscle cramp may result. Anyone who gets cramps in their calf muscles or foot arch knows the agony. It can hit any part of the body that is muscle and leaves you feeling bruised.

This can happen several times a night.

ALL you can do is to survive it.  Survive in the moment. Survive for today. Hope that the flare will be a short one and that the nights won't get any worse than this. Breathe through it and ride it out. 

Is there anything that can be done for it?

Nope, not really.

Women in Peri-menopause and Menopause already taking HRT/ERT may find that the night sweats part lessened in intensity and frequency.  

Meds can cause as many problems as they help with. Everything has side effects. Ease one problem and worsen another.  Cause something else to happen- as if we need another issue to deal with. The remedy can be worse than the problem.

There is no good formula for relief. That does not mean that we should not try to find ways to ease as many of the issues that feed into the Painsomnia Pretzel as possible, making the sleepless holes as small as possible and the good sleep as big and good as it can get.

We may have to learn to live with nights like these, to cope as best we can.

BUT we never have to give up on the ideal of those rare and precious nights of good sleep.

1 comment:

  1. This describes my experiences too. I have M.E/CFS, Fibromyalgia and TMJ and there are days when I can't tell what's hurting me most. Add to that the medication cocktail and you feel like you might as well be dying. I'm currently still awake, having been up since 8am yesterday (Monday) morning with Painsomnia. I think that is a great way to describe it and I shall use that from now on, if that is alright with you? Sorry for moaning at you, especially since you are suffering also. It's just good to let it all out and I'm sure my better half is sick to death of hearing it. I hope your flare buggers off soon and allows you to get some much needed rest. Take care. xoxo