• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Feeling Cold...

JoC

Messages
7
Location
Belgium
HPA Axis

....for about the past couple of months, nearly every afternoon at about 4 or 5 pm, I start to feel very cold. Once I put on extra warm clothing/socks/footwear I'm usually ok and then sometimes just a few hours later I feel normal again. It is summertime at present so the weather is not cold.

I was reflecting on this phenomena this afternoon and it is about six months - give or take, since I commenced Beta Blockers but other than that, nothing else really has changed.

Any possible connections to M.E. or meds?

Hi Francelle, I experienced the same until I started to work with my doctor on my HPA axis. The first thing was measuring my body temp. in bed in the morning before I got up (10 min.). I had to this for several weeks. I also had to take my temp. when I was feeling cold over day. My body temp was in general far too low (35,4C) and sometimes even lower. He did put me on Armour Thyroid ( 1 grain) and low dose of cortisone and a lot of other stuff, for muscle spasm and cramps and high dose of vitamins etc...after a couple of months the frequency of my cold-attacks, like a call them, went drastically down. I only have them once every 14 days. In general they indicate that I did too much the days before. After a while, you will know when you will pay the bill...for me it is about 48 hours after I did something which was demanding too much from my body (like gardening for an hour). Before the treatment I slept with a thermic underwear and a nice warm training. By the way, my bloodvalues were OK, before the treatment, but my doctor wanted to give it a try. I hate pills, but they do make my life livable and I can even do some office work from home. Talk to your doctor and ask him to help you. If he don't want to, find another. This is what I did also. Have a nice day. Jo:balloons:
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Hi Joc,

That's really interesting.
Did you start taking the thyroid, cortisone and everything all at once? Or one at a time to sdee what each one was doing? It would be interesting to know if it is one of them that is working in particular, or if you only get the effect with all of them.
 

JoC

Messages
7
Location
Belgium
Hi Francelle,
well as far as I remember well, my memory isn't as good as before, for the muscle spasm I do use a very low dose of Klonopin (Revotril 6 drops every night). This medication I started a year ago. Since June this year the doctor did add Armour Thyroid (1/4 grain) and 10mg of Hydrocortisone. I stayed on this level for about 10 days, just to make sure that my body did get used to the hormones. Once I was used to the dose, I had to add another 1/4 grain of Armour Thyroid. Again de headaches came up, so I did take 1/4 in the morning and 1/4 in the late morning. Once I felt that it went the good way, I did take 1/2 grain in the morning, waited again for a while and did add another 1/4 in the late morning etc..until my doctor was happy with my levels and my body temperature. I'm now since a couple of months on 1 grain of Armour and still 10 mg of Hydrocortisone. However, since I have severe bowl issues I have to take a lot of Probiotics, Vitamine D2 and Magnesium and stay on a very strict diet as I'm also intolerant for Lactose (100%, I have to take Lactase to digest the 10 mg of Hydrocortisone), eggs and gluten...I also must limit the amount of fibers (fruit and salads) as my intestines are giving me issues, the day after. Working on my HPA axis, did improve my life, but it isn't the miracle remedy it is just improving the quality of your life, but it doesn't cure you. I keep believing that one day they will find a cure for it...