Cold feet an hands: Does anyone else... - Charcot-Marie-Too...

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Cold feet an hands

cath123 profile image
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Does anyone else suffer with chilblains? Have them over toes in past but now have them on sole of feet making standing painfull let alone walking. Doc suggests i should keep them warm lol suggestin thick socks an fur lined boots not understanding how.difficult it is to get footware to fit afos. Any suggestions??

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cath123 profile image
cath123
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6 Replies
PhilC profile image
PhilC

Well of course the Doc is right, I have ice cold legs and feet in the winter and if I am not careful I get sort of chilblains on the legs, areas of intense itching and my skin gets mottled.

I have found the following work although you might not want to try them all lol :-

(1) Thermal Underwear i.e long johns.

(2) Ladies thick tights

(3) Sheepskin lined boots / slippers with long thermal socks.

+ for the hands I have found fingerless gloves the most effective.

You need to avoid forced warming of the feet at all times so no pointing at the fire or radiator.

Penarthgran profile image
Penarthgran

I have to agree with Phil. The really important thing is not to let your feet get cold (I know that they feel cold all of the time) but avoid putting on shoes or boots that have been stored in a porch or other cold place. Wear bed socks at night and don't go bare foot in the house in Winter. I have lots of pairs of sheepskin boots ( cheap Children's ones from Costco) and always change into warm slippers when I come in from outside. Try to avoid standing in any cold wet location, waiting for my children and now grandchildren come out of school is one of the worst things I can do.

John1945 profile image
John1945

Hello Cath 123 :

Most sufferers with Cmt have problems with cold hands, and cold feet : You will be aware that your "long" nerves which connect to your extremities are wrapped around in a wax like substance called MYELYN : In Cmt your myelin sheathing is defective, and leaks: Therefore the strength/speed/velocity of the electrical pulses from brain to your muscles is greatly reduced Over a period of time this causes your muscles to waste/weaken, therefore causing hand an foot deformities : Most people believe that a nerve, would be of a smooth surface to allow signals to pass along it smoothly : In fact a nerve looks like a string of link sausages:

Your myelin leaks out at the many joints, as this is the weakest part of the nerves insulation :

Your PERIPHERAL NERVES (near to surface) consist of 2 No. types :

1) SENSORY nerves (touch/feelings/sensations) from muscles to your brain :

2) MOTOR nerves (send commands/instructions) from brain to your muscles :

Whilst your feet may FEEL COLD, they may actually be warm to touch : Your Neurologist can arrange for a NERVE CONDUCTION TEST (N.C.T.) which would determine the exact nerves, including measuring the true speed of your slow nerves speed (velocity) :

Also ask you G.P. for an A1C blood test, which checks for symptoms of Diabetes Type 2, which also causes "numbness", and a lack of feelings/sensations to your extremities :

Best of luck ! ! ! John.... Glasgow

Amanita profile image
Amanita

2 questions for John, or anyone else who knows: (well, 3 or 4 or so....)

I have been wonderindg for some time whether someone could answer these , please:

Why should slow-conducting nerves with a crummy myelin sheath (CMT 1) lead to freezing cold (really) feet and hands? Why does it take so long to warm them up? Is circulation implicated at all?

Why do feet "feel" cold sometimes when they aren't?

What causes "burning" sensations in one's feet for no apparent reason?

What causes ones feet and lower legs to look blotchy?

platespinner profile image
platespinner

If you wear trousers, the long "Heat Holder" socks, available in a number of colours and the silk long johns available from Patra and as used by the RAF have been very useful for me, together with the double thickness "slipper socks" from M&S for padding round the house, the Heat Holders leave bits all over the carpets and have caused domestic disquiet!

beachwine profile image
beachwine

My feet are always cold & I live in sunny Florida! I bought an electric throw for my king size bed. I didn't need or want an electric blanket but the "throw" size covers from my knees to feet on my side of bed. Perfect. For the living room while I'm watching TV or reading I bought from from QVC, a shopping network, a Serta heated foot warmer. It's a soft plush fabric pocket to slip your feet into with several heat settings. I asked my doctor if it was safe to use these products & he said yes, just don't turn on high. So around the house my feet are toasty. I have a fortune tied up in socks. I have to have knee high socks because of AFOs & thin enough to wear with shoes, but warm. So I keep looking.

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