I have been diagnosed with Lupus for over 20 yrs and had the symptoms even longer. For 10 years I have had excessive sweats they used to say it was the menopause but I don't believe it is any more, it is driving me mad. I get them in the day but worse the moment I go to sleep. I feel going to sleep seems to trigger them. Am. I wrong. I am sitting here another night of not sleeping. The minute I close my eys they start. I am not feeling great at the moment a bit up and down. Does that make it worse. Help my sanity. Thanks

11 Replies

  • I don't believe it's menopause related but possibly lupus related. I've had lupus symptoms for the past 12 years but only got a diagnosis this last year as things got really bad. Since thing have become worse I have a terrible time with this. I'm only 29 and not going thru the change but have extreme body temp fluctuations. I sweat doing nothing and especially on and off all night. I get what you are saying it is so uncomfortable, it makes me want to take several showers a day. I haven't found a solution but can tell you it's also worse when I'm having the ups and downs too. Hope we both get some relief and rest soon.

  • Thanks for your reply. I started my symptoms at 26 and not diagnosed until 34 so totally understand how you are feeling. Just wish the doctors would listen more. I have to admit at 57 things have improved a lot so fingers crossed you will get a better start with controlling your Lupus. Sweating can be I feel be very distressing but to doctors it's not life threatening so they don't take a lot of notice. Take care and we are all here for you. Xx

  • dear gillyg and terrier-lady,

    I am the exact same as you both. ive had lupus since 2005 fibromyalgia since feb this year, I usually get night sweats on and off over those years and was told its "just lupus" but the last two summers I have been suffering with excessive body sweating from head to toe! anytime of day and it can last for hours. changing my clothes and showering several times a day. im not even doing strenuous exercise to justify it, I was tested for menopause 2 years ago but that came back normal. I often search for help with this as it so embarrassing, standing there at work with my wet hair stuck to my head and feeling dirty :(

    doctors don't care or understand how much it affects us, its deemed trivial.

    sorry to moan and I havnt been able to give you advice.

    I wish doctors would take this big problem seriously.

    hugs to you both x

  • hugs to you too. xx

  • It has to do with the autonomic nervous system, the one that regulates our body temperature. There is little recognition and attention paid to the effects of fibro and SLE on the autonomic nervous system but there is consensus that there is an impact. Sweating, difficulty breathing, heart palpitations, feeling of jumping out of skin when falling asleep, difficulty swallowing, dizziness when standing up, these are but few of the symptoms that could be caused by an affected autonomic nervous system.

    As this isn't very well known, many rheumatologists are tempted to just look for more tangible test results, such as X-rays, menopause tests, etc. But even if they'd look for autonomic dysfunction and found it, treatment is not very clear cut.

    So although there is something that could explain the sweating, there isn't much one could do about it other than control the disease that triggered it. The more controlled the lupus is, the more likely that the sweating is brought down. And then there is a balance to be made between increasing the dose of current medication to control the lupus "only" for night sweats - doctor would probably say that it isn't worth it but ultimately you're going through it, so you need to consider it against the risk of increased dose.

  • Great explanation: thanks Purpletop! Very helpful

  • I use to feel terrible heat jumps with sweats. In the day and at night. Night I would be dripping and wake up all night long. I was exhausted. I noticed since I have been on digestive enzymes and sticky blood enzyme, my heat jumps are not as bad. It doesnt wake me up, although I still get a little but, it's tolerable. Few in the day as well, not as hot. I can tolerate without flipping out. Very interesting. I don't know if there is a connection. I think I agree with purpletop and lupus affecting the autonomic system. I still have occasional breathing difficulties. Almost like my brain is not working my autonomic system correctly. Keep reading and researching everyone!

  • This sounds very familiar I have to sleep with two fans on me to try and get some sleep even in winter and even then don't get many hours most nights , this has been the whole time I have been ill even years ago before I got diagnosed with SLE !! I have been to see my rummie today and he said it is being controlled with the med I am on so I guess this is as good as it gets for me now xxxx

  • i sometimes feel like im going to blow where im so hot and sweating, i was told it was a side effect of hydrox by my dermy??? confused.com

  • My GP refuses to believe my night sweats are related to Lupus saying it is the menopause so it is interesting to note the above. It is always when I am very tired, I lie down and get hot which wakes me, then I am very cold.

  • Hi, I've had night sweats for a long time and I still get them time to time. I asked so many doctors and read so many blogs but nobody could explain.

    I had an autoimmune thyroid condition and my tsh which was still in range so i wasnt medicated. However after two weeks I started levothyroxine the night sweats disappeared.

    To sum it up if you have autoimmune thyrotitis it causes adrenal imbalance and because of this you may get night sweats.

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