With my ME/CFS flare this week I have been having those old familiar hot flashes or hot spells that I have been known to get over the years since becoming ill. These are different than the hot flashes I get around my period. I still wonder sometimes though if it isn’t a combination of both perimenopause and ME/CFS. My cycle ended over the weekend and I have been having these hot spells all week so I really believe this time it is due to the ME/CFS flare.
I wish I could find something that would help this very annoying symptom. It gets me awake at night, keeps me awake during the day when my body is desperately begging for sleep and is just overall miserable.
The hot flashes in ME/CFS is due to poor functioning of the autonomic nervous system. This includes controlling of the blood pressure, pulse and sweating. This is all controlled by the hypothalamus. One minute I will be shivering and covering up with all of the blankets I can find – the next I’m stripping down to as little as possible because I’m so hot.
I’ve tried Evening Primrose Oil & Black Cohosh but it is not helping with the hot flashes from ME/CFS. I was wondering if any of you have tried anything with success that you could share?
I have always thought that the intense chills followed by hot drenching sweats were a sign that the body was trying to throw off an infection in my case my ME/CFS turned out to be Lyme Disease and after long term antibiotics I am now nearly 100% better from debilitating arthritis and muscle weakness of duration 6 years. see charity website http://www.lymediseaseaction.org.uk for more information
Sandy Robinson says
Hi Joanne, Thanks for the link. I thought for years that maybe I too had Lyme Disease but after multiple testing at the Fibro & Fatigue Centers, I found out that fortunately that is one illness I don’t have to add to my list. It does feel like the body is always trying to fight off an infection, doesn’t it? I never thought of the hot flashes and night sweats in that manner but it is similar to when you are sick with the flu or something.
I too get these except I don’t sweat! just burning hot, freezing cold and so on all night until about 4 am when it seems to sort itself out. I can’t find anyone else with the same problem so I’m lost for answers. Whatever you do, don’t Google it. I wish i hadn’t! did you ever find anything to help it?
I have this too! I get it 3-4 times/day and it takes me down immediately.
clare turner says
Hi Sandy,If your Lyme tests were from NHS it would be worth having a private Lyme/ME/CFS practitioner test you,because they have far more accurate methods. A microbiologist friend has researched exhaustively for both of us because our G P’s & specialists called our illness ME/CFS; but it was Lyme Disease plus other opportunistic organisms. We are still having antibiotic & supplement treatment. The effects are hopeful. Your symptoms do sound very familiar to me.I wish you well.
I came upon your post just now a bit late but assume you may have found something that can help you out with the hot flashes. I have CFS/ME and use Belladonna to help me with my hot flashes. The one I use comes in oral spray form and it really is fantastic when the flashes turn up. just thought I’d comment incase you hadn’t found anything to help.