serious cold intolerance and cold extremities

[Ambrosia_angel]

My body always feels cold and I'm always cold especially in my extremities.

I thought it would improve as the summer comes but it's not. It's only getting worse. It's been like this since I've been ill but worse the past few months.

Is this common with cfs?

 

[Helen]

Did you check your morning body temperature? You might have a low thyroid.
A good site with lots of information that might challenge some doctors, but the knowledgeable agree to it:
www.stopthethyroidmadness.com
Hypothyroidism usually shows up in labtests (TSH, free T4 and free T3) but there are people who are exceptions. You will find all info you´ll need in the link above. Just some thoughts of one possible explanation to your feeling of being cold.

 

[Ambrosia_angel]

I've been tested for thyroid and my metabolism seems to be okay. Is cold intolerance a part of cfs? Or is it just me? It's becoming too much and I want to try and ease of using my duvet so much now. People tell me it's because I don't move around enough but I dunno.

 

[peggy-sue]

Being unable to regulate your body temperature is very, very common in ME.

It's something that requires energy. We're deficient in energy. Extremities are the first bits to get cold.

I can't handle heat or cold. I need an ambient temperature of around 18 - 20 degrees centigrade and I'm fine.

Anthing more or less and I suffer.

 

[Ambrosia_angel]

Okay thank you. I can sit with a heater on my skin until the room is boiling hot. Just can't stand the cold.
Even when I went to the hospital they couldn't get my pulse because my hand was so cold and my oxygen was showing low on my finger.

 

[vamah]

I have this problem also. I can start to lose feeling in my fingers and toes even in temps above freezing. I have found that caffeine makes it worse. I once worked in an office hat was always cold, evren in summer. After a few hours I could feel my brain start to shut down from the cold.

 

[peggy-sue]

If your extremities are cold, the best way to warm them up is a hot water bottle - swaddled in a blanket - you want to WARM them slowly, not heat them up rapidly, that won't do you any good in the long run, leads to chilblains etc.

 

[justy]

Yes - very common I think. Mine has improved slightly as my functioning has improved. Hate being bloody cold all the time. I live in Wales - so imagining I might feel warmer because it is the summer is laughable really.

Luckily we have a log burning stove, so I can always get one room really toasty - although I get fed up with lighting it, and then the ash tray always needs emptying, and then there isn't any kindling, or newspaper... arrgghhh!! by the time I light it I am hot and sweating from the activity, with freezing cold hands and feeling at deaths door.

I also have a problem late at night - if I stay up after about 11pm then I cannot warm up no matter what. Once, many years ago I even had a few episodes of extreme uncontrollable shaking whn this happened, which felt like hypothermia. I have to be warm when I go to bed, go to bed early enough to stay warm and have either a nice warm man or a hot water bottle in the bed with me. Then I am OK and good to sleep. Of course them I always wake up in the night hot and drenched in sweat!

You cant win it seems. Now that I can go out more I always take a wrap with me to wear in case its not warm enough (it never is) in the cinema I put one round my legs and one round my shoulders to keep warm. When I go to anyone's house I take gloves, hat and scarf and wrap - Welsh houses are notoriously cold.

All the best
Justy.

 

[peggy-sue]

It might be "summer" here - but I'm sitting in two jumpers and a big thick cardigan over a long sleeved t-shirt, I'm wearing thermal long-johns under my jeans and extra fluffy bedsocks on top of my normal ones.

Loads of layers are the easiest way of dealing with it. You get better insulation from a couple of thin jumpers than one thick one and you can always peel a layer off if you get overheated.

 

[justy]

Ha @peggy-sue but I believe you live in Scotland, so like here, summer doesn't count.

 

[Hanna]

Feel the same. Even the slightest feeling of cold won't allow me to get some sleep at night. So I go to bed with multiple layers on me, and then "peels" the stuff like an onion if necessary. When weather begins to be cold ,I get some difficulty to speak. Facial muscles become petrified and I turn blue very fast around the mouth. And when I say cold, I live in Israel... Israel, far from beeing like Scotland or Wales).
But warmth is also a trigger for malaise... and now it is 33 C outside, .

 

[Helen]

I've been tested for thyroid and my metabolism seems to be okay. Is cold intolerance a part of cfs? Or is it just me? It's becoming too much and I want to try and ease of using my duvet so much now. People tell me it's because I don't move around enough but I dunno.

May I ask if you have saved your lab test results from the thyroid testing? There is a controversy around the world about at what level of TSH patients should be treated. I still think it is a good idea to check the morning body temperature as that might be a clue to evaluate your metabolism.

 

[Ambrosia_angel]

At least I'm not the only one . I'm wearing 2 thick jumpers and one thin today. But everyone wants the door open and I'm absolutely freezing. It looks like I'm going to need another pair of fluffy socks. I was hoping that it would improve now that my function is improving like you justy but no let up yet. I guess I just have to see how it goes.


@Helen I have a few different tests but I'm pretty sure I don't have my thyroid tests even if I did I'm sure there's not much I could do. The gp probs wouldn't prescribe the meds if my levels weren't the best.
I will check my morning levels starting tomorrow. Do you have any ideas on how i go about it? I have a basic home thermometer.

 

[minkeygirl]

I have a heating pad in my bed and one on my sofa for my feet that are so cold it's painful. It's horrible when it's 90 deg. outside and I need a heating pad. It's the only thing that helps me.

@vamah I know someone who uses Doctor's Best Benfotiamine for her numbness. She said within a day or 2 of taking it the dumbness went away.

 

[BeBe]

HaHa, yes indeed I'm freezing right now!
It explains my fabulously bizarre daily attire of multi colored layers of scarves, vests, etc.
I like long sleeves for tucking my hands in and out of so I can use them when I need them
instead of wearing gloves in the house.

I promised myself to never cut my hair short again. I cut it off after deciding to grow the gray out and stay away from more chemicals. screw that. looks nice, but it makes me even colder!

Big fleece hoodies with pockets are good for the final layer. I also use a heating pad
or even better-- a warm snuggly pet happily for me, one of my cats likes to cuddle.

If I get dehydrated-
then I feel like I have a fever--but I can still feel cold.... it's weird.

Am currently looking into home made electrolytes or
a good version of the concentrate to buy that's not too costly.

 

[peggy-sue]

My cardies have to have pockets - everything has to have pockets.

Hand warmers and convenient for carrying stuff, pockets are just ACE.

 

[golden]

I get very cold. When i was bicycling, i needed three coats on for when my temp. Dropped. My outer coat is full length like a sleeping bag

I am still wearing my winter woolly hat.
But it fluctuates and i am warm sometimes too.

A hotwater bottle on the kidneys and feet plus sometimes a cold pack on my head is jyst tge job.

A NukuNuku may be useful, i dont know if anyone has tried this material. By supporting and nourishing the kidneys -helps to heat the whole body

http://www.nukunuku.co.uk/News(2600605).htm

 

[Ambrosia_angel]

I've also heard about those electric blankets. Apparently they're really amazing. Might ask for one for my bday

 

[golden]

Personally, i try to remain as earthed as much as possible for body healing and so dont use electric blankets...

Just an additional consideration.

I dont know what I would do without my Birthday Month (lol), easter, x-mas, and bank holiday presents

 

[daisybell]

I am a fan of wooly pyjamas, bed socks, brushed cotton sheets, electric blanket, duvet and 2 fleece blankets, with two cats on the top for sleeping! And if it is actually at all cold out, I wake in the morning with my nose like ice... !
Not exactly alluring but at least I am warm enough to sleep, until like @justy I wake up in a sweat in the wee hours.

Does anyone else have Raynauds? I have developed this as a symptom.