The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Night Sweats

Discussion in 'Sleep' started by Snookum96, May 20, 2015.

  1. Snookum96

    Snookum96 Senior Member

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    Hello,
    I have a lot of sleep issues, the worst of which is waking up frequently. I'm not sure if I wake up because I'm soaking wet or for another reason. This has been happening for a couple weeks and I wake up every hour or two two and have to get up, change, sometimes take a shower or bath and get new blankets because it's gross getting back into my soaked bed. Does anyone have any strategies for trying to get back to sleep when you wake up like that? I don't know how I'll get a good sleep as long as this is happening.
    Some nights are better than others but I haven't had a sweat free night since this started.
    My docs thought it was my medication but it has been changed several times with no change in the sweating.
     
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  2. rosie26

    rosie26 Senior Member

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    I usually only had one night sweat a night. I vaguely think it may have happened twice in one night on the odd occasion. I am trying to think what you could put around you to soak up the sweat so that it doesn't wet your sheets. Perhaps a toweling kind of top that might stop the sheets from getting wet and you would only have to change your top?
     
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  3. Kati

    Kati Patient in training

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    hi @Jodie1980 are you peri-menopausal? Has your doctor ruled out common causes of night sweats? Do you get fevers with that? shake and chills? Have they performed routine blood work/imaging?

    Night sweats is not so common for ME/SEID. Unfortunately most physician I know will try to put any symptom under the ME/SEID umbrella and leave it behind.

    It sounds like this is quite distruptive and is significant. i would ask the dr again (and make sure it is #1 on the agenda.)

    Practically speaking, I used to work in labor and delivery as a RN and we had washable squares to protect mattresses from body fluids. They would measure say, 3.5 feet square. One side was quilted cotton and the pther side waterproof, and this side would go against the mattress. If you had a few of them, when you have night sweats, you could quickly remove the wet one and add the dry one, and quickly return to bed.

    I hope this helps, best wishes
     
    Last edited: May 22, 2015
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  4. taniaaust1

    taniaaust1 Senior Member

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    I used to get severe night sweats with the ME (which certainly wasn't perimenopausal) esp in my early ME years, I don't think it is uncommon with this but of cause there is other common reasons too.

    Use towels on your bed and a large beach towel over you. You sound like you are worst then I used to be, I used to only have to get up and change my clothes once a night, twice at the most. but yeah its discusting...
     
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  5. lnester7

    lnester7 Seven

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    I had some bad night sweat, and I discovered it happened everytime I ate honey Nut cherios, I am allergic to wheat but for some reason when I eat that for dinner, I had night sweats. When I restricted the allergy foods it went away.
     
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  6. Snookum96

    Snookum96 Senior Member

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    Thank you for all your suggestions.
    I just realized i wrote that I have had this for a couple of weeks, I meant to say a couple of years!

    Thanks @Kati
    I'm not peri-menopausal I don't think, I've seen a gynecologist and my female hormones have been tested.
    I do have some of those washable squares that I put on my mattress, under the fitted sheet to protect it. Maybe I will try putting one directly under me.
    I do get shakes and chills as well but no fever. My temperature actually seems to be chronically a bit low.
    I have had a ton of bloodwork done, as well as a brain MRI and multiple ultrasounds

    I never considered food allergies @Inester7 but I will start tracking what i eat before bed to see if there is a pattern there.


    I will definitely try the beach towels, thank you for the suggestion @taniaaust1 and @rosie26 !
     
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  7. *GG*

    *GG* Senior Member

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    I think I had this for about 7 years, and hear that is typical, not sure what can be done about it. Perhaps an immune modulator? I have been on LDN since 2009, rarely get night sweats now, but perhaps that cycle of the illness was about to "expire"?

    GG
     
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  8. Ema

    Ema Senior Member

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    Babesia can cause drenching night sweats too. You might think about Lyme and co testing.

    Once more serious causes of sweats, like lymphoma, have been ruled out, it almost always comes back to hormones.

    High or low cortisol can cause night sweats. A saliva cortisol test can help rule this in or out. I'd get one with the additional night time collection tubes if possible so you could sample during the sweats. If cortisol is low, adrenaline release can cause sweating.

    For me, estrogen dominance can occur at any absolute hormone level so the testing doesn't reveal much on the surface. However, it's possible that supporting estrogen detox with DIM and/calcium d glucarate and possibly increasing progesterone could help.
     
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  9. Snookum96

    Snookum96 Senior Member

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    Thanks,
    I asked my gp for the Lyme disease test as part of my referral to a clinic here in Canada and she didn't even know how to order it. She said the clinic can order it but they have a 13 month wait list so I may ask one of my other doctors to test for it.
    Lymphoma has been ruled out.
    I just switched from the birth control pill to Mirena IUD (Progesterone only) and haven't seen a change so far.
    I will put cortisol on my list for the next visit!
     
  10. Ema

    Ema Senior Member

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    Hormonal birth control can easily cause night sweats. I wouldn't expect the Mirena to be better because it contains a synthetic progestin, not progesterone. The Paragard is hormone free but presents some of its own issues. Nonetheless, if you could switch to a non-hormonal method of birth control, I think that would be a good first step to resolving this issue.

    Make sure that the Lyme testing is through IgeneX. There are many threads on Lyme testing if you search the forum. You can read about the positives and negatives the testing and why conventional labs typically miss Lyme.
     
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  11. ahimsa

    ahimsa Senior Member

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    I had night sweats a lot during my first years of ME/CFS. I first got sick at age 29, with no sign of hormonal problems, and not on any hormonal birth control (tubal ligation). So it was definitely not early menopause in my case. And 25 years later, now that I am finally in menopause, night sweats (at least for me!) are nothing like hot flashes. Very different.

    My night sweats were like the feeling you get when a fever breaks. I did not feel warm at all when I woke up. I felt somewhat cold and clammy.

    I never got more than one per night (maybe I did and don't remember?) and not every night. For me it seemed to be when I overexerted (which may have been very little activity when I was quite sick).

    When it happened it would soak through my t-shirt, my pillow case, and the top sheet. I would have to get up and get a fresh t-shirt and pillowcase. And then I'd have to either throw off the top sheet or shift it to one side. Or sometimes I'd go and sleep in the guest bedroom.

    Here's an earlier thread on this topic that might have some useful information:

    http://forums.phoenixrising.me/index.php?threads/night-sweats.34818/
    (note post #4 - extract from an ME newsletter)

    I hope something in one of these threads helps you.

    In my own case I never did get any answer or specific treatment. They just faded out and happened less often.

    EDIT - In case it was not clear, this is just my own experience. There are many different reasons for night sweats and it might be due to something other than ME/CFS. But from what I have read they are not uncommon for people with ME/CFS.
     
    Last edited: May 23, 2015
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  12. Ema

    Ema Senior Member

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    My hormonal pre-memo night sweats are not tied to hot flashes. They leave me cold and clammy as well.
     
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  13. Ruthie24

    Ruthie24 Senior Member

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    I had a lot of night sweats in the first couple years of my disease process. At the time I was only diagnosed with POTS/OI but my POTS doc thought that the sweats were very common with that diagnosis and related to the dysautonomia.

    I had stopped having them but now am getting them again. Wake up just drenched with puddles of sweat on me. Whereas I was getting them several times a night a few years ago, for the most part I just get them now when I first wake up.

    I've been on the same dose of estrogen patch for years (after surgery) so don't see why that would have changed.
     
  14. PallasKat

    PallasKat

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    Hi @Jody 1980, I have had similar night-sweats for over 8 years! I really feel for you!!

    At first, I would only have them for about a week or so leading up to my period - then, once I had my period, they would subside for three weeks. I was 40ish when they started. Understandably my PCP first treated then as though they were part of me being peri-menopausal (even though there were no indications of hormonal imbalances in my blood work) - we tried birth control pills to "even out" my hormones, . When that failed, we tried various herbal remedies like black cohosh etc. She then prescribed muscle relaxants and sleep aids so I could just try to sleep through the sweats, but they only seemed to make things worse for me - causing confusion when I woke up and never really helping me sleep. Nothing worked.

    Long story short, I had to learn to live with them. Over time, my night sweats have increased to EVERY NIGHT. Usually they happen at least once - sometimes twice per night. I have a LARGE collection of "wicking" pajamas (mostly made of modal fabric, cotton/lycra blends etc.). I also use very specific blankets (Calvin Klein plush blankets are the best - thankfully they are not at all expensive). The other thing that got worse over time have been my dreams, which are VERY vivid, very active, stressful and exhausting - I wake up sore all over from the tension. Changing bedding and PJs at least once per night has become routine.

    Because I live in a "cannabis friendly" state, I was able to try a small amount of a "medible" (cannabis edible) for sleep. I have never been a recreational weed user, since THC didn't agree with me much, but I discovered that it WORKS!! I finally sleep through the sweats and my dreams are calm and peaceful. I wake up most mornings feeling refreshed and alert - and about 75% pain free. I feel very blessed, and it seems like I am slowly getting my life back.

    Cannabis is hit-or-miss for a lot of people, but if you can get it right, it is like a miracle. I still don't much like it for fun (it just makes me feel introverted and self conscious), but it is absolutely wondrous for sleep.

    Best of luck to you - I hope you can figure this out!

    P-Kat :cat:
     
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  15. WoolPippi

    WoolPippi Senior Member

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    :ill:
    Reading this in bed, soaked from yet another nightsweat.

    With me, I don't think it's hormonal (estrogen/progesteron) as I'm balancing those very well. Ema has a very good point that birth control hormones are not your kind of hormones, they will mess up bodily functions. If you're doing hormones you need human Progesteron, not progestins.

    With me, it is stress-hormonal I suspect. Cortisol. Even though I am supplementing and balancing this one too I am having night sweats again for some time now. I think it is because I am doing too much, too high overall stress during the day.

    Things during the day result in sweats during the night. As we're having ME, these things can be seemingly insignificant things that occur during the day. For me: not enough Iodium; blood sugar spikes (for ex. From one small glass of milk); eating something my body does not like (for ex. milk, one liqorice or bowl of lettuce); putting something on my body that ofsets its balance (for ex. coconut oil on my face when it's Summer, toothpaste with sorbitol etc.)

    Having five of these small things occur during the day makes me pay the prize at night, it seems. This supports dr. Selye's theory about the bodily stress system.

    That's why Paliaskat's approach works, I think. It eases the bodily stress responce. And rightly so. Stupid body, getting all worked up over "nothing" ;)
     
    Last edited: May 23, 2015
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  16. Rlman

    Rlman Senior Member

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    the babesia lyme co-infection can cause night sweats
     
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  17. Daffodil

    Daffodil Senior Member

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    i have them a lot. my doc says it can be related to leaky gut, but can have other causes too. i used to think it was a result of chronic infection but now i think maybe it is part of die-off? not sure.

    i noticed that on IV rocephin, which is a very powerful antibiotic, they stopped completely.
     
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  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    I have very mild sweating at night and only if the room cannot be made really cool. being warm is one thing that prevents me from falling asleep quickly.

    It might not be effective for others but I have found that putting an ice pack at my feet helps. I have a comforter and a sheet so I put the pack between the two and periodically touch my feet to it but mostly I let it cool the area by my feet. It's easy enough to try anyway.
     
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  19. Daffodil

    Daffodil Senior Member

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    i am the opposite..i like the room cold but wear ankle socks and want my feet warm lol
     
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  20. Snookum96

    Snookum96 Senior Member

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    Me too. I like it cold but I have to wear socks or my feet are so freezing I can't sleep.
     

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