Coping with Night Sweats in ME - the Practicalities, Difficulties, & Shame.

One of the severe ME symptoms I find hard to discuss in any detail & yet causes me huge problems, is what I call 'Meltdowns' - Essentially, super sized night sweats - though I can get them any time of the day or night, awake or asleep. It's an insane, shame making machine of clammy grossness, & generally makes me feel like I'm lying in a swimming pool, not a bed - NOT cool, and terribly embarrassing!

There are many causes for night sweats, including the menopause, other hormonal problems, neurological illness such as MS and ME, & even some cancers. For those of us with Myalgic Encephalomyelitis, it seems to be caused by a combination of our neurological problems with thermoregulation/temperature control, our immune dysfunction, and our endocrine/neuro-endocrine dysfunctions. You can read a lot more about ME symptoms on The Hummingbird's Foundation for ME - it's a very long list of ME symptoms so I suggest you use your browser search tool (ctrl F) to search for 'sweats'. There are several small sections covering it.

For me, 'meltdowns' come along or get worse with my body being especially exhausted, after overworking it, if I have adrenaline rushes, or tachycardias, and usually are associated with flashes of heat or chills, (& for some reason, for me, increased pain) and get worse with lack of sleep - ironically, they tend to make my insomnia worse because well, it's not nice to try to sleep in a wet bed, with your hair stuck to your head! It just keeps you from ever getting into the deeper stages of sleep, & ultimately can make me so wide awake that I haven't a hope of getting back to sleep.

Because of this, night sweats aren't purely a comfort issue - they (& the adrenaline rushes often behind them, because they're so exhausting) can easily cause a tidal wave of worsening symptoms. Despite that, none of my doctors have ever been interested in helping me find anything I can do to reduce or eliminate these symptoms. Goes back, yet again, to how once you have an ME or 'CFS'/Chronic Fatigue Syndrome diagnosis in the UK (& many other countries), you're essentially written off by the health service. There is very little of any substance doctors are actually allowed or encouraged to do for us.

My sweats sometimes get so bad that it basically doesn't matter what I do, I still wake up freezing cold in a bed that seems to have had a recent visit to the Sea. :p I'm not talking a little bit of a damp pillow - I'm saying my hair could literally be wrung out, and my bedsheets & especially pillows are absolutely drenched.


Awake or asleep, I can literally have sweat running down my face & drenching my hair like I've just run a marathon - & my head generally feels like it's been deposited in an oven! And as of yet, I haven't found anything that really stops it. It's all pretty awful physically, and added to that is the emotional factor. Sweating is in our society a bit of a taboo, especially if you're a woman ... and really, it doesn't exactly make you feel attractive. It can be really shameful and difficult to deal with ... makes you want to hide away in a hole & never come out - despite the fact that it's absolutely not our fault!! Just talking about this, I feel quite disgusting, and I'm struggling with finding the courage to actually publish this post!

I do have some coping mechanisms that help me copy, which are worth mentioning. (Note, I'm not going to link to any of the products I'm about to discuss, as I don't want it to seem like I'm advertising them. It's just a list of things that help me - that I want to share with you in case it can help someone else too!)

• I have waterproof pillow protectors under my pillowcases. Note - don't use, if you can help it, the plastic kind that just crinkle and rattle about under your head - they're super annoying & sure don't help with sleeping, plus they make you feel like a kid who wets the bed, you know? Instead, find the kind that are towelling on the outside and coated in a PU waterproofer on the reverse of the fabric. They're much softer & thinner - though in all honesty they cost more & don't tend to last quite as long as the other types.
• I also have a waterproof mattress protector, quilted so it doesnt rustle. Expensive, but worth it to protect my much more expensive mattress!!
• I try to remember to keep spare pillowcases in the room so they can be quickly changed if I need. I can't always lift my pillows to do that though, so it depends on whether my carer is here.
• Ok, now this is gross, and totally embarrassing - but a quick fix I sometimes use when the pillowcases can't be changed, or when I know I'm only going to sweat more anyway so it's not worth changing them till after I 'wake up' - I dry them with a hairdryer and then try to go back to sleep. When you're bedbound and dependent to any extent on a carer, you don't always have the perfect option of re-making your bed or even changing your pillowcase! Unfortunately, we don't live in an ideal world. I also hate leaving tons of washing for my carer too, so I try not to have the sheets changed constantly.
• I believe you can actually buy sleepwear specially designed women going through the menopause who get night sweats, which helps wick the sweat away from you so you don't wake up cold - but I've never tried it as I have problems with wearing anything even vaguely heavy - causes too much pain. It's vest tops and shorts for me! Whatever you do though, don't wear silky type clothes if you're having night sweats because they won't absorb any moisture and you'll end up freezing!
• Always try to make sure you have water by the bed, and keep replacing your fluids. Easier said than done for a lot of us, I know, but important all the same.
• You can buy special cooling sheets now, made of Tencel fabric - I've never tried them though, too expensive. I always thought they'd be a really good idea though!
• You can, alternatively, buy a cooling insert for your pillow - the Chillow. Now these are amazing. They have a special gel in them that stays cool, which in turn helps you to cool down. You can even put them in the fridge before bed, if you like your pillow super cool. I find it helps reduce how much I sweat, and also just keeps my head a bit cooler when I am sweating. (It gets radiator hot!) Chillows are designed to stay cool for the first few hours of sleep, then slowly they get a little less cool - just as our bodies are designed to do. It doesn't quite work for me though because my sleeps are so much longer than for most people - so the coldness doesn't last quite long enough. However it helps to a larger extent, and it's well worth the money if you can afford one!! (It also helps when I have a migraine, by the way!)
• I always have a fan on in the bedroom to keep the air moving around the room. This won't work for everyone, probably depends on your specific reactions to room environment, but for me, I simply can't cope without one, even in the winter! Oddly, I sweat more in a cold room than a hot room - & it's even worse if the temperature is very changeable ... so I try to keep my best to keep the room a stable, warm temperature ... with the fan to cool me down. I suggest experimenting & seeing what works for you. :)
• I use a lot of talc for when I have milder sweats. It does nothing for the worse ones, of course.
• You should probably be careful how much caffeine you have, & spicy foods you eat; & how much alcohol you drink.
• I have heard that for some people, certain vitamins, such as vitamin D, can help reduce or even eliminate night sweats. I'm in a catch 22 here though, because I literally can't afford to buy vitamins every month ... and my doctor always seems reluctant to prescribe them as of course, it costs the NHS money.
• It's also worth checking your thyroid function. A lot of people with ME may have thyroid problems which can contribute to these symptoms.

Reader Question : Do you have any coping tactics which help with night sweats?

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Coping with Night Sweats in ME - the Practicalities, Difficulties, & Shame.

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