MEA website survey on cold hands and feet

[charles shepherd]

Overseas votes are welcome in this month's MEA survey on cold hands and feet

Why are we asking about cold hands and feet? >>

http://www.meassociation.org.uk/201...sks-about-cold-hands-and-feet-2-january-2014/

 

[charles shepherd]

If anyone has any other useful tips for dealing with cold hands and feet please let me have them - either here or via ME Connect. I will then be updating this information later in the month to form a new MEA Information Leaflet on Cold Hands and Feet.

 

[OverTheHills]

Loose fitting slippers socks gloves etc will be much more effective than tight fitting ones
OTH

 

[lansbergen]

Why only cold hands and feet. What about icy cold inside all over the body and outside heat not helping?

 

[charles shepherd]

Why only cold hands and feet. What about icy cold inside all over the body and outside heat not helping?

Reply:

Good question because what you describe is a fairly common symptom that forms part of the cluster of symptoms that are associated with a generalised disturbance in temperature control mechanisms (thermoregulation in jargon) in ME/CFS, and which are probably linked to hypothalamic dysfunction. The hypothalamus being a small gland in the brain that acts rather like a thermostat.

Having said that, the reason we have not widened the question to include more generalised disturbances in temperature control is because the website tool we use only allows a short question (90 characters max) with a small number of one option only short answers.

I think we might return to this aspect with a specific question at a later date.

 

[Min]

It's my back that is always icy, icy cold.

 

[Hell...Hath...No...Fury..]

I've had icy hands and feet for 15 years causing blue/grey toes but only 1-2 really severe fingers on my right hand causing severe 'toothache' in the fingers.

The only thing that would break through the ice feet in the past was soaking in a hot bath, but my hands, feet (and body) are greatly helped now by my electric blanket in bed. On a cold day, this is where i live. I have on occassion sandwiched myself between two electric blankets in the past but they cut out from overheating so i stick with one now.

 

[CFS_for_19_years]

If anyone has any other useful tips for dealing with cold hands and feet please let me have them - either here or via ME Connect. I will then be updating this information later in the month to form a new MEA Information Leaflet on Cold Hands and Feet.

I've had cold hands and feet, to the point where going outside in cold weather brought on icy toes that had to be rewarmed in a tub of warm water. While inside I've had to rely on wool socks and slippers. Now I can go around barefoot inside since starting to use this product, which supplies nitric oxide precursors:

https://www.swansonvitamins.com/swanson-ultra-beet-root-circulation-support-complex-60-veg-caps

 

[cigana]

My feet and hands are cold during the day, but when I lie down, they warm up (after about 20 minutes). So I have always assumed it is due to blood pressure rather than thermoregulation.

 

[Valentijn]

External warmth is the only thing that warms me up when chilled, but it has to be fairly close by and intense. Hence I use an electric blanket/throw, since being in a warm room or in warm clothes or under normal blankets doesn't help at all.

 

[Valentijn]

From the site: "Alcohol in moderation can help to open up the circulation but do not mix alcohol with medication."

It seems pretty ridiculous to suggest alcohol, since ME patients are almost universally intolerant to it

 

[lansbergen]

Good question because what you describe is a fairly common symptom that forms part of the cluster of symptoms that are associated with a generalised disturbance in temperature control mechanisms (thermoregulation in jargon) in ME/CFS, and which are probably linked to hypothalamic dysfunction. The hypothalamus being a small gland in the brain that acts rather like a thermostat..

Whatever it is, it is reverseble. I have improved enough to be able to warm a cold bed with my body in 10 minutes.

 

[Little Bluestem]

I didn't see any survey. What is an airing cupboard?

A heated mattress pad is really good for keeping warm in bed.

 

[Snow Leopard]

This was actually one of my first symptoms - almost overnight, I couldn't stand up and my hands and feet were cold to the point of numbness. I still have the Raynaud's pheomenon, but not nearly as bad as when I first became ill.

 

[taniaaust1]

I "had" cold hands and feet all my life. People used to call me a "cold fish" as a child and young adult as when I held someones hands they'd feel cold to people. My normal BP during that time and early ME years was 80/60.

In my first years of ME. I developed Raynauds bad during winters (at times I couldnt drive a car due to no feeling in my fingers which made them very hard to move) and I also had several bad episodes of chillblaines in my toes to the point I couldnt go to work as I couldnt wear shoes (so then it became a safety issue for my job). Note I still suffered from low BP during this time.

The only way I could wam my hands and feet was via external heat.. putting gloves etc on didnt help at all, I had to apply direct external heat all over hands or feet (and it would take a while to warm them too) eg warm water was the common way I'd warm them up.

This has all changed, I no longer get Raynauds and havent for years now, I no longer get chillblaines. What is different is my BP changed and I think this is what has shifted things for me eg the chillblaines, the Raynauds and the cold hands (my hands now feel warm to people and myself). After years of low BP with ME (and low before that during childhood), when I had a full remission for a few years but then crashed again.. my BP was very different this time round.

My BP was even a bit high with my ME there for a while even with sitting (prehypertension) but now days when sitting its usually good, issue is it now swings badly eg it can go 197/136 on 1 min of standing .. or it can on more rare occassions ditch on standing 60/40. When Im laying my BP can be getting on the lower side. (So my body is almost doing like the disorder called "pure autonomic failure" but in an opposite way to what they do as mine usually goes high when upright and low when laying).

Anyway, if you are looking at these symptoms I think you need to check out how the low BP is involved in those who have cold hands and feet. I still have low blood volume thou (often end up in hospital having to have a saline IV) thou Im now a "warmie" beautiful warm hands and feet now.

It my case it seems something to do with the BP rather then just the low blood volume (thou that may also have played some part in the issue before).

 

[Valentijn]

I didn't see any survey. What is an airing cupboard?

I think it was on their main page, rather than at the link provided.

 

[drob31]

I get cold hands usually after eating.

 

[taroopher]

I found in this forum that B12, Niacin, Lugol and Cayenne pepper can help
I also saw a testimonial of Guy Abraham saying that lugol helped him adapting cold weather
Cayenne and Niacin because it improves circulation
B12 I don't know why