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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Do people feel better in cooler temperature?

Do you feel better in colder weather?

  • Yes much better

    Votes: 25 46.3%
  • Yes but only a little

    Votes: 11 20.4%
  • Neutral - I feel the same as always

    Votes: 0 0.0%
  • No I feel worse in cold weather

    Votes: 18 33.3%
  • I feel better but pain symptom is worse

    Votes: 0 0.0%

  • Total voters
    54

Raindrop

Senior Member
Messages
129
Location
USA
Thanks for the suggestions Raindrop! I live in a condo with an airconditioner on the roof. I know it's up there because you can see the little dot on the roof on Google earth. It's my air conditioner but I can't put anything on the roof per condo rules. One of the biggest businesses in Fl is air conditioner maintenance. They come fairly quickly and I've only need them once in three years. My wife and her friends do all of the outdoor chores and shopping. I'm bed bound with a few bulging discs and a compressed vertebrae. I've also had some minor strokes back in the 90's post anesthesia. I'll do anything necessary to keep from overheating. The feeling of sickness, weakness, and mind numbingness that I experience in the heat are as I mentioned not believed by healthy people. You're the first person in 13 years I've met that can relate to how bad I feel. Do exactly what you must to feel well and don't worry about what other say or think. It's not worth it. We're shunned by the healthy and not understood by the medical community. It's such a relief to know that I'm not the only one like this. Not that I would ever wish this on my worst enemy and I wish that there was a cure, not just treatment but a cure for this hellish disorder.

Fredrictoo:
Oh, my....You might also try to get a PORTABLE AC UNIT (just a hose goes from a mount on the window. It's easy
and it's portable. Worth any price at ALL!! Today is the first day cooler where I live in 2 weeks, but I still can't get
out bc I didn't sleep all night (another horrid problem). It makes me feel very good that you finally met someone in me that CAN finally understand how bad it is for you - the heat. I often feel like I can do very little in this world for anyone being this ill. At least I have given you validation for what is very very REAL. Don't mind anyone else - use 7 fans like I do and one with a spray mister on it (cost $10 at Bed B and B) WITH a fan - hand held.Get ALL the Props that you need. That is how I survive. Fall is coming soon!
 
Messages
17
Location
New Zealand
I have replied as yes I feel much better in cold weather as the rest of my symptoms become a lot more manageable or like another member stated it is probably more to do with the fact I feel so much worse in summer in the last few years I have had severe heat intolerance which causes all of my symptoms to flare up and makes me seriously ill.

Alongside I have also developed a peripheral neuropathy with measurable decrease in nerve conduction speed on a test, but I don't have any lesions so they are fairly sure I have ME.

I would be interested in hearing from other people who have had ME most of their lives and had a sudden worsening of symptoms it is really starting to freak me out a little. I have had less temperature regulation since childhood when I had a major viral infection and low blood pressure and some autonomic dysfunction.

Can anyone explain to me what causes the het intolerance I assume it is a different mechanism than MS?
 

Antares in NYC

Senior Member
Messages
582
Location
USA
I've recently noticed that in the cooler weather I seem to have more energy, get less headaches and generally feel better than I do in warmer weather. In the UK there was a heatwave lasting about a month and during that time I felt so much worse than ever yet last christmas I felt almost back to normal when resting (still experience PEM but not close to that which I get in the summer).

I'd appreciate if everyone voted if they can as i'm using this as potential research for a possible upcoming article.

additionally i'd be interested to hear if anyone has heard of or preferably read anywhere of whether there is any evidence of an increased risk of atherosclerosis in ME/CFS - I realise this may seem random but i'd love to see if there is a link
Just wanted to share my experience, which is quite different. I was raised in warmer climates, and my CFS started soon after I moved to the cold and heavily polluted northeast (Boston, NYC).

I personally feel worse in cold weather. Since I got CFS, every winter has been a little bit tougher on me. Every brutal winter brings me a host of new issues, pains, infections, and a decreasing tolerance for cold.

Not sure why, but these northeastern winters kick my rear end. It may be the decreased NK function that leads me to major chest colds in the winter. Or maybe it's the recently observed similarities between ME/CFS and MS. As I understand, MS patients often do much worse in colder climates. Maybe this is an element common to autoimmune syndromes.

Just my two cents. Yes, I have seriously been considering a move to a warmer state, as much as I love NYC. This city can be a serious pain, but it's difficult to give up.
 
Messages
82
in the early days of my illness i tried sleeping in a tent as every time i would enter my house i would go down hard and fast.To this day ive always thought that if i could only get somewhere safe, that i would recover. A couple years ago i made it down to the USA...(im from Canada ..eh)...we went to disneyland etc. but it was not until i made it to the sea shore in Sandiego Calf. that i huge weight had been lifted from my body. I think due to the clean air beside the ocean as we stayed right in an oceanside hotel. If a person looks into the Marshall Protocal we see that they have best success with killing the bad bugs while in another part of the country. Lyme patients also change when they visit different parts of the world. Just my two cents worth..........eh