What is painsomnia? Sometimes I feel as though there is a kind of language that us spoonies speak, with words that are probably only on our radar and not those of others. It's like a sort of club that nobody wants to be a part of (or nobody I know anyway). Like much of the spoonie language, I had been living with painsomnia for a long time before I actually knew that there was a word to describe it.
What is painsomnia?
I tried to do a bit of googling for a 'proper' definition of painsomnia. I started with Wikipedia, as I tend to do. Well, it seems that painsomnia doesn't exist according to that giant of a resource of information. Even the most obscure thing I have looked up has a page, yet when I typed this query in I simply got a 'the page painsomnia doesn't exist' message.
Next up I tried The Mighty and came across an interesting article that describes painsomnia as being when 'someone is in too much pain to be able to fall asleep' (The Mighty). I think so many of us spoonies have had this experience of pain and insomnia. We lie in bed many nights with migraine, joint pain, muscle pain and so many more types that mean the clock ticks away and no amount of counting sheep helps us get off to sleep.
While not referring to 'painsomnia' as a term, the Sleep Foundation highlights the far-reaching impact of pain-related sleep loss on the 21 per cent of Americans that experience chronic pain. As they describe, pain can cause a sleep debt of an average of 42 minutes. That sleep debt can lead to many have issues with work, relationships and mood, amongst other concerns.
During the experience of painsomnia though, perhaps this type of insomnia isn't only about pain . . .
Non-pain painsomnia symptoms
When I experience an uptick in pain I often find that other symptoms like to come and join the party too. As uninvited guests of course. So while my head is pounding there is also dizziness, and when my bladder is doing it's painful thing then I end up walking back and forth to the bathroom far too often.
It's nights like those that a hot water bottle, my headache hat and my nausea relief bands are my firm friends, and why they are always to hand. They help manage the pain, sensory overload if that is an issue, and even if I can't sleep they do make me feel a little better.
Spending hour after hour in bed over the course of the night is really lonely. It feels as though the rest of the world is fast asleep, tucked up in bed with only a glimmer of moonlight lighting the bedroom. Yet here we are, lying in bed and if not wide awake, then certainly a groggy type of awake, feeling the pain coursing through our body. That type of loneliness, at that hour, is very much an 'alone' kind of loneliness. Nobody knows what we are going through.
Saying that, I will suggest that this is where social media comes in. Because of course social media is global, so there is always someone awake somewhere in the world! I've had some really helpful and uplifting talks at 3am with friends on my Through the Fibro Fog Instagram. They have been supportive and calmed me down in a way that is so truly lovely.
During the day pain doesn't cause me fear too often. At times, of course. There's always a background worry that it is going to escalate out of control. But it's not a regular fear in my day.
Yet the middle of the night painsomnia sometimes has me scared. A migraine attack feels more painful somehow, or my bladder more sore. Perhaps it really is more painful, or perhaps fatigue makes everything feel more hopeless which in turn makes me anxious and feel more pain.
The 3am crying fit? Yep, I've definitely been there many times. Sometimes in my bed, sometimes on the bathroom floor. There's a desperation at that time. Desperation for the pain to reduce, desperation for sleep and sometimes a desperation to receive medical care that will have to wait until morning.
I think we all know that our thoughts betray us a little in the middle of the night. For some reason I believe even the most outlandish things my brain is telling me, plot out entire conversations I am going to have with someone or decide that it is perfectly reasonable to do something very dramatic that will affect my entire life. The next morning? Yep, I realise that pain made me think all kinds of strange things . . .
Have a read of Today is not a good day to make decisions, and that's OK by A Chronic Voice for more on this.
Some ideas that may help in managing painsomnia
I'm going to be honest and say that I wasn't sure whether to offer suggestions to help in this post or not. There isn't one definitive course of painsomnia treatment, and for many of us we have to look to managing symptom as unfortunately they can't be overcome completely.
Painsomnia is hard, and very individual. It may be that you feel fairly 'with it' at that time, or it may be that lying in the dark with your eyes closed is the only thing you can tolerate and your body can't take any more than that. So the suggestions below may be helpful, or not at all. Feel free to roll your eyes at them!
If painsomnia is a regular occurrence for you then seeking professional help for both your physical and mental health is really important. A course of CBT may be really beneficial for helping you not to fall into negative patterns of thinking, or engaging in catastrophising, which is so easy in the middle of the night (and something I did a LOT!).
Painsomnia can take different forms, and sometimes I am actually quite awake and need distraction. The light goes on and I need to do something, anything, to take my mind off my bladder pain. So I will admit that I often scroll Instagram, watch YouTube or put on a podcast. I know, screens aren't the best idea . . .
If I am more 'with it' then I find that journalling can be helpful. It feels good in a way to get the frustration down on paper, rather than it whirring around in my head.
Of course, it depends on where your pain is as to whether any products may help you manage it alongside any prescribed medication. Some really good ones:
Avulux migraine glasses: a really helpful product for light sensitivity. The Avulux glasses block harmful light spectrums, while allowing soothing green light in.
Avulux has kindly offered my readers $25 USD off with the code: Throughthefibrofog
Headache hat - this wearable hat has inserts for engineered ice so you can target that hot head feeling that comes with a migraine attack.
Blisslets - nausea relief bands that work through acupressure, and come in cute designs that don't look 'medical' at all.
Blisslets has kindly given my readers 15% off their nausea relief bands with the code fibrofog
Migraine Shields glasses - if you are trying to read or have resorted to scrolling Insta with the lights on, then these blue light blocking glasses may be very useful!
Migraine Shields have kindly given my readers 20% off with the code throughthefibro
4 Head Stick - a menthol based product that you swipe across the forehead to help with head pain.
Yuyu bottle - a long water bottle that you can wrap around you.
Weighted blanket - many people swear by their weighted blanket, and I find it really helpful too.
I hope this post is helpful, if only that you know that you aren't alone with it. Being awake and in pain at night, especially when it is night after night is so hard, and has such an impact on day to day life. Please note that the discounts above are affiliate links. This means I receive a small percentage of the sale. This is at no extra cost to you.
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UK Amazon product links
Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.