Numb foot question ?

A new problem I have in my right foot only, as most CMT sufferers know, lower legs and feet get very cold summer and winter but now my right foot gets numb and my nerves make me feel on edge, I have to put my feet in warm water to get my circulation going again to help me calm down, can any one else relate to this ?

[bev5985]

Ican I have been suffering with a numb left foot now for about the last 6 months. It started with my ankle years ago when i had knee replacement surgery when my ankle started to go a little numb and swell up now I am left with this feeling of my foot not being there

[oliverdeb]

hello Ulrich , this is Oliver from Australia , but i am really an immigrant from Malta, Ulrich i have had numb feet many years ago because of CMT and now i am 53 years old , my advise is you get used to it and you learn to live with it , my problem is when my feet and lower legs pain and ache thats when i get upset. i am at the moment fighting depression because of my CMT , because it just started to effect my hands and forearm going a bit numb, i did not expect this to happen to me , we have to keep a positive outlook ,put it this way its not going to kill us , dont forget a lot of people die with other illness at a young age. i am still coming to terms to except this condition . at least we have other people like us who can share their way of life ,. the funny bit is i am 6,2" and look well build and people will have no idea that i have such a bad disease , any way Ulrich nice to hear from you . best way i find to deal with my CMT is to take it easy and dont stress both body and mind .

[John1945]

Hello to Ulrich..... All sufferer's of Cmt Neurological Disease, will recognise as they continue through their ongoing 'lifelong', and "ever-so-slowly", "progressively-worsening" damaged peripheral nervous system, and which also includes a lifelong muscle atrophy (wasting-away), it is well known that "numb" feet are a common symptom of this debilitating disease :

Cmt usually displays itself in the nerves, and muscles within our bodies extremities, ie (feet/fingers/hands), as these locations are the furthest distance from our brain, and therefore they will be receiving the "weakest-wave" signal to their damaged myelyn nerve(s) insulation (sheaths):

I have been taking Amitriptyline 70mg Tabs x 1 hour before bedtime, and it this medication has certainly helped me get a good nights sleep :

Best of Health, John (Glasgow) ......

[Mamasuee]

I too suffer from a numb right foot. AND my feet feel cold which causes me to be restless & can't sleep. (I warm a sock filled with rice in microwave to warm them).

After many years of searching/testing/doctors I have a Dx of CMT. I am going to a CMT center of excellence clinic next week and hope to learn more about this condition and I'll post any new info I may learn.

[Hidden in reply to Mamasuee]

Thanks for your reply, I look forward to hearing about your experience at the clinic.

[Hidden]

Thank you all for your replies.

[Primary-Bursar]

Hi I too have numb feet and hands on occasion. My right foot is the worst.

[Jealousone]

Both my feet get numb and very cold. The only time they're warm is at night when I'm in bed - and then it takes hours for them to warm up. The only feeling I have in them is pain. This is only in the balls of my feet and my toes. I can move my big toes but not the others. It's very scary as you don't know the extent of this affliction with regards to the future. I try not to think about it as I'll become a nutcase. Other people try to belittle this numbness and tell you not to be a hypochondriac. Nice - huh!!

Does warm water work with feeling and circulation? I tried cold water when they were burning with nerve pain but it would freeze up my legs and make it difficult to walk - so a no-go. It's good to know I'm not to only one to feel this way - and to know I'm not making a big deal over nothing!!

[Hidden in reply to Jealousone]

It works for me, I don't go to bed with cold feet, I would not sleep,

[Amanita]

My technique for warming up freezing cold feet in bed is to place my hot water bottle between my knees. It is counterintuitive, but works much faster (less slowly) than actually putting it in contact with my feet. Bedsocks help too. A good jet of warm water on your feet in the shower before going to bed can also be fairly effective - provided they don't have time to cool off again.

I have started getting a tingling sensation just in the soles of my feet for a minute or two just when I take the weight off them. Not painful mercifully, but certainly not pleasant. A few months ago it happened about once or so a week, but now it's several times day. Hope it's not the beginning of any new devious CMT trick....

[Hidden in reply to Amanita]

Thanks for your reply, I will try the hot water bottle between my knees.

[Jealousone in reply to Amanita]

Thanks, I'll try the hot water bottle for my freezing cold feet. I use a wheat pak I heat up for muscle aches in my shoulders and back, I'll use that too in conjunction. As for the tingles, I get them in all parts of both feet when I take pressure off them. I think it's just part of CMT. I'm on Lyrica (pregabalin ) twice a day. The worse thing about it, is losing your balance as you lose feeling in your feet -the reason I use a walking stick and I'm not old - only 48

[Jealousone in reply to Amanita]

t works - Marvellous

Bought a hot water bottle, filled it with nearly boiling water n put it between the knees and later - voila - warm feet -YEAH!!!

Another problem solved - what can I do about numbness? Hand's - I solve that by moving the affected area. Difficult with feet when you can't move that part. More thinking involved

Thanks about the water bottle idea

[Amanita]

Hooray ! I'm so glad it worked for you.

I only discovered it one night by pure chance a few years ago, and wished I'd known decades earlier.

Dunno about dealing with numbness though. Guess that's a more intractable one.

I am assuming by numbness you mean a non-feeling as opposed to something more positive....? Non-feeling like not knowing if you are wearing socks or not, or whether you are walking barefoot on carpet or floorboards but jolly well feeling pain if someone treads on your foot or you get a corn.

I understood that lack of feeling was the result of CMT increasingly interfering with and damaging the sensory nerves starting with our extremities, and that it is just part of the CMT package.

[Jealousone]

On the feet I get a numbness - an area that feels hard, cold, that has no movement and feels dead but can still feel pain caused to the area -its not nice. I just assumed it was a result of nerve damage and cant be helped

[SAMBS]

I know this post is 2 mths old now, but Arrived back in Essex a week ago and Trying to find a permanent home to rent here now. 2nite 1st time back on CMT Group. I may have said previously that my French Haematologist at end August said he thinks my CMT and other conditions may be linked to my Thyroid problems.

There has been quite a lot of discussion on THyroid UK, about the fact that the Thyroid, linked to the other glands, Hypothalmus, Pituitary if not working properly in conjunction with them, can and does in some people, lead to sclerosis of the nerve sheath, causing numbness or pain in the affected areas.

Like another reply on here, I have difficulty walking because the soles of my feet have very little padding, but also the nerve cell transmitters in the brain, affected by my brain haemorrhage in 2013 does not help either. There are too many health issues wrapped up together for me, to the extent I developed some serious neurological problems - convinced I was being watched/followed in France and sadly have to say the same applies here in Essex. I know what I see, I know what I hear, and have said to friends people can change cars, hair colour and length etc., but rarely their faces!

So yes CMT is a very serious condition especially if linked with other health problems like Thyroid ones if autoimmunity is involved, as in my case. Drs then bombard our bodies with many pharmaceutical medications, ALL fighting rather helping each other. Serious health conditions should, I think, be treated one at a time to help stabilise the condition before a different medication for a different proven condition is treated. That way our livers also have time to adjust to the waste or toxic by products left there and so on to excrete them from our bodies. Everything we eat, drink or take goes through the endocrine and digestive systems in our bodies.

[Hidden]

Thanks for you're reply, my thyroid has often been checked but never a cause for concern.

[Ladywonder]

I too have cold feet etc live with it ignore it easy to say I know.... I take plain old asprin when my legs feet hands pain and feels like my body is so restless I just can't relax seems to be a great help better than anything else also a deep heat rub is used often

[Hidden in reply to Ladywonder]

I can't take aspirin but thanks.

[Jogeemama]

Recently my brother, Age 53, had chemo for Lymphoma. Apparently, it was never put in his records that he has CMT. They administered vincristine, which is the worst chemo you can give to a CMT patient. He is now bedridden, after being given 1 treatment. It hit him hard!! We are hoping for the best.

IT IS IMPARATIVE THAT YOU TELL ALL YOUR DOCTORS THAT YOU HAVE CMT!!

MEDICATIONS ABSOLUTELY AFFECT CMT!!!

[Amanita]

I'm so sorry about your brother, Jogeemama.

[Mac_Shaz]

Hi I too suffer with CMT and under hospital advise am taking 70mg amitriptyline at night! Unfortunately I have this in both my feet and is slowly moving up to my chins. I am under the Neuropathy Dept and every 6 months have my sensations retested. My symptoms are made worse as I also suffer from unstable ankles plus other stuff (Musculoskeletal disorder). After the last 2 have learnt to live with the condition but the Amitriptyline does definitely help.

hope this helps.

[MicheleJ5]

Yes!! My feet and hands are aleays cold!