Cold legs and Amn

[spalding]

Hi I'm new to this was diagnosed with AMN 3 years ago does anyone else feel like their legs are cold all the time even tho to touch they are not

[jolocny Volunteer]

Hello, Spalding! I was diagnosed about 2005 and one of the symptoms that bothers me terribly is the coldness in my lower legs. I live in central NYS, so we have bad winters. I used to think it was caused by the cold but am finding out that it stays with me long after winter is over. My legs, below my knees, can get very cold - "to the bone". Mine has advanced to where they are cold to the touch, the skin white.

It's gotten worse since I use a wheelchair to get around now. I've had testing but everything related to circulation has come back normal???? If I'm up and moving with crutches the color comes back, but I still feel the cold.

I'm sure you'll get other responses ... maybe someone will have an answer that's better than mine!

Take care of yourself!!

[Britt in reply to jolocny]

Hello Spalding, Jolocny and all. I have a heated throw blanket that I wrap around my legs. I sleep with it tightly wrapped around just my legs many nights. Beyond that I haven't found anything that helps. They've been cold for about 3 days straight now.

[jolocny Volunteer in reply to Britt]

I found a heated mattress pad that works really well - heat rises so it's very comfortable when I get in under the quilt. It's made a huge difference with my cold ankles and feet!

[Magnolia209]

Yes, my legs are cold all the time and I wear socks too all the time...even when sleeping and it doesn't matter if it's summer or winter.

[Shelcee]

Hi Spalding

Yes I have the same it started last winter and I tried everything to warm my feet up, they feel cold and painful like a 'stinging' sensation but they are warm to the touch. As Jolocny described they feel cold to the bone. We have just had our first snap of cold weather and once again my feet are in pain. I went to my doctor and he just put it down to nerve damage. I also wear socks to bed in winter and summer.

I would be keen to hear anyone else that may have had similar issues and found some sort of solution apart from moving to a warmer climate.

[SongStream]

I have cold feet that sometimes alternates from left and right or both. I have to wear socks as well. So nice to know I'm not the only one.

[spalding]

Thanks everyone my phsio said best way to describe it is thermostat in my body is not working due to AMN

[easygoin1]

Hello,

I have the cold lower legs and feet as has been described as well. It is worst at night and I have worn socks to bed for years. I have described it often as a cold wind blowing over my legs and feet or as if they are in cold water. It interferes with sleep quite a bit. During the day I don't notice cold so much but pins and needles and numbness. I take gabapentin to help with the neuropathy, which this is, but it doesn't fully take care of it and that is why I have been investigating medical marijuana, because it has been know to help with neuropathy. If anyone has any experience with this I would be very grateful to hear!

[spalding in reply to easygoin1]

I take gabapentine dose has now been increased it's not doing a lot

[spalding in reply to spalding]

D

[SDAffirm]

My feet and calves get cold. From time to time I wear light compression socks during the day and it seems to help.

[spalding]

Thanks for that I will try them

[spalding]

Does anyone know if AMN affects your arms and fingers

[Shelcee in reply to spalding]

I have pins and needles and dead hands and arms at night, my physio said it could be they way I sleep, who knows. Seeing a Neuro next week.

[Britt in reply to spalding]

Yes Spalding it does affect arms and hands in many. I've had several EMG's done that show I have significant nerve damage. I have a lot of problems writing as it's hard to hold a pencil when you can't feel it. I used to have a lot of pins n needs in them but now they are mostly numb. I've had severe burns to my hands because I forget that I don't have a lot of feeling and picked up hot pans only to realize later that they are blistered.

[jolocny Volunteer in reply to Britt]

I know that, Britt! I've recently dumped hot water over my feet - not good as I don't feel much heat in my legs or feet. My husband now waits in the kitchen so I don't get the idea to move a pan and take the chance of spilling again. Keepers! I've started to use twice the size of the pan that I need so there's less chance.

[spalding in reply to Britt]

Thanks for that my consultant said it might be carpal tunnel but I don't think it is some days I cannot write

[easygoin1]

Hello Spalding,

From my knowledge, which is by no means complete, the only nerves affected are from the lower spine down, that is until, or if, it becomes neurological and the brain is affected. At which point I don't know if the upper extremities may become involved. This is of course besides the adrenal gland effects. I don't remember in my brother's case if he started having trouble with his hands and arms before the end.

[spalding]

Thanks very much I have trouble with my arms has been a small change in brain scans I am a 59 yr old female and they say it's rare for women's brain to be affected

[nan17]

Hi Spalding,

I have AMN and used to have cold feet. I believe Evening Primrose Oil is the solution. I've tried to do without it, and the cold feet come back. So now I am completely sold on EPO as the answer. No more socks for me.;-). Good luck.

Nan17

[Cherie]

I have numbness from about my shoulder blades down and also in my hands, fingers and areas of my arms. I have spoken to others ( particularly women) who also have areas of numbness above the waist.

I find it easy to check when I am in a fairly warm shower, and where I can feel heat and where I can't.

I can suffer from cold legs and feet during the day but sometimes at night my legs feel like they are burning.

[spalding]

Thanks for that my feet really feel like they are burning when I am in bed I stick my feet out of duvet

[easygoin1]

Nan17,

May I ask how you use the Evening Primrose oil? Is it applied topically or is it take internally? Thank you. I also wanted to ask if anyone else has found their feet and leg sensation is significantly off? I stepped into a hot tub last year and it felt like the tub was not working because I thought the water was cold, and was shocked when I felt with my hand

[Cherie in reply to easygoin1]

I have to be very careful on holiday as I can't feel the ground heat if I am in bare feet. Other parts of my feet can be very sensitive. My orthotics specialist who I am seeing on Friday wants me to wear boots to help support my ankle but it is so painful both on top of my feet and around my ankle.

[Britt in reply to Cherie]

Hello Cherie. I can't even put shoes on my feet at all because the neuropathy gets a lot worse. I can't even imagine wearing boots. My legs already feel like they have cinder blocks attached from the hips down. I can't walk very far and need wheelchair to go any kind of difference. I can get away without wearing shoes but have to always have ankle socks on unless the neuropathy in my feet is real bad then the socks are off n hanging out from under blanket. I'm sure I'm preaching to the choir.

Great to talk with you again.

[SongStream]

I forgot to mention that additionally to bouts of cold and freezing feet, my hands are embarrassingly cold, too.