Wednesday, 30 March 2011

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.

Photo copyright Meredith Farmer - Visit her Flickr Site Here!

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.

Photo copyright Luigi Anzivino - View their Flickr site here
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!

Bedbound girl in bed by Jennifer Hardt - view her site here!

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?

Susannah's Signature
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! :)



  1. I don't have the sweats anywhere near as bad as you do. Yikes! But I do have that problem as well. Especially in the summer, heated room or when I am doing something.

    I have actually been standing there with sweat just pouring down my face and body like I just finished running the Boston Marathon!

    I also have bad B/O with it which is really embarrassing. Ugh.

    I think I noticed a difference with my night sweats when I added a featherbed. One side warms and the other side cools. I really haven't noticed as many sweats since I got it. Not sure why.

    This was a really good post. I'm guessing you are not alone in this.

    I'm sorry you have to deal with the UK health system. Gosh my heart goes out to you all.

  2. Yikes indeed!
    Sorry you have it too - really sucks doesn't it!! Honestly I just don't think it's fair we have to deal with embarrassing things like this on top of being ill! (Hire a human rights lawyer and sue ME?) Lol!

    Funny the things that can help that you don't even expect to. I think mine have been marginally better since I got a memory foam bed.

    Thanks - it's nice to hear that! :)

    Oddly, I actually love the uk health system ... in everything but for ME sufferers, of course! It's not perfect, but it provides healthcare for everyone no matter how much money you have (or not). I was a nurse before I got sick, working in the NHS, and am totally a supporter of it.

    BUT when it comes to ME, I think the UK is one of the worst countries to be in right now.

  3. WOW! Thank you sooo much for the much-needed advice on this issue. My friend on fb posted this and it couldn't have been more timely. I appreciate your candidness, and for including info about helpful products. Thank you, thank you!!

  4. Hi Cheryl, nice to meet you! Was it Saraya whose post you saw?
    I'm really glad that it helped a little to read this. I know how hard these things are to cope with!
    I hope your symptoms let up soon!!

  5. I like to keep a nice, soft, fluffy towel by the bed for when this happens. First pull the top sheet back so my fan can dry it some while I place the towel over the swamp my bed has become.

    Always make sure to wash the sheets and towel afterwards. Check your waterproof covers on the pillow and mattress every time you change linens too!

  6. Thanks Brent - great ideas!!! :)

  7. Has anyone tried using sports tops? Those ones that are supposed to allow your skin to breathe while wicking away moisture like "UnderArmor"?

    I have a few of the tight versions, but don't think I could wear them to bed. A looser version might work though...

  8. I haven't, but only because I'm so touch sensitive that I can barely cope with just a thin little vest top and shorts. I've always thought that if i didn't have that issue, those sports type clothes might really help. I believe they do actually do pyjama versions now too, designed for women in the menopause. Might be worth checking out! (Goodness knows how much they cost though!!

  9. Overheating is a major problem - not only night sweats - I literally overheat, its as though someone has lit a fire inside me and my whole body is burning. The strange thing is that I am often overheating inside, yet if someone touches my skin it feels normal (not always but often)

    Hot or cold I have not temperature control at all.

    I feel sorry for my husband who had to sleep in a room with the windows open and the fan on at all times. He was lying on the bed with me the other day, fully clothed, and still had to put his dressing gown on to keep warm.

    We joked, if I have visitors we better tell them to keep on their coats and perhaps offer them gloves :)

  10. Hi Suz! Thanks for posting - it's lovely to hear from you!

    Yep that's exactly what I often feel like too Suz - that's a really good way of describing it!! 'Hot flush' really doesn't convey the nightmare of a body that literally can't control it's own temperature - or cope with external temperateness!! Yes, my body feels normal to the touch the majority of the time, too! I get very flushed cheeks but that's about the only obvious external symptom I think.

    Aww, your poor husband, hehe. It sounds like he's pretty supportive though - I'm glad hon! People always end up freezing in my bedroom too because I have a powerful fan always on. My carer's got used to it, but everyone else gets the shivers lol. I think they must think I'm a little bit insane! ;)

  11. Hi Susannah

    I'm grateful to say my husband is very supportive (althought its is difficult for anyone without ME to understand fully how it effects you) I dont know how others manage without support - my heart goes out to them.
    I do feel guilty as my illness seemes to have stopped both our lives - I try to encourage him to go out and do things on his own, but we end up in a bit of a guilt circle - me for being ill, him feeling guilty about leaving me.

    Too much to take in!
    In fact I feel quite exhausted just thinking about it.

    On the warm front, as I am 51 (where did last 12 years go?) I expect to start going through the change - If I start with the hot flushes I will spontaniously combust (keep checking the news for the event:)

    Keep well - or as well as possible :)

  12. One of the saddest things about this illness is how many sufferers end up so alone because friends and family just don't understand or even 'believe'. I think there must be a much higher percentage of people with no-one to care for them, with ME, as opposed to those with other severe chronic illnesses!

    I think that guilt cycle is pretty normal for our kinds of situation... it's just so hard and so complicated. I think it can make a big difference if you feel comfortable enough to talk really openly about it together, though.

    Yikes, the last thing you need is hormonal hot flushes on top of ME temp issues!! Have you tried talking to your doctor about it in advance to try to make some kind of plan for when it does happen? Might be worth a go?

    Take care hon! :)

  13. I know all about night sweats but have found they die down (at least to a tolerable level, where a towel or two on the bed is enough) IF I stay within my means. Too much exertion (mental, physical or emotional) and they're back.

    For me they started after NHS treatment, which is how my ME began (after a course of broad spectrum, high-dosage antibiotics for an infection). I had a minor operation to explore blood in my urine. After that, I had a range of problems, including the night sweats and a constant need to clear my throat.

    I can only agree that the NHS/BMA outlook on ME is decidedly myopic. The PACE trial – torn to pieces by the IACFSME – still carries weight; apparently it's just a neurosis (LOL). IMHO, they make fools of themselves, given the overwhelming evidence that it's physiological in origin and frequently occurs as a minor epidemic.

    The trouble with State provision of health, as in that of education, is the "one size fits all" response – no choice. It can also fail widely and deeply, while the majority fail to notice, and continue to sing its praises for dogmatic political reasons.

    As Churchill used to say "keep buggering on!"

  14. I have found that menopause hot flushes are different to ME ones and for me not as violent yet still annoying. The ME flushes attack all the body as if you had a fever I even go scarlet which is fun when walking around a shop. Ive hurt my wrist at work which has caused me a major melt down physically and ive been bed bound for most of the last six months. My pillow and duvet are made of wool and when able im getting a wool mattress topper. They seem to regulate the sweats better and are lighter. A book on Candida Albicans has some very good ideas that has helped ME sufferers aparently will have to give it a go.

  15. I started taking a couple Advil at night when I noticed a Norco worked - occurred to me it might be the Tylenol. I also use it during the day. VERY helpful.