NEUROPATHY AND COLD WEATHER - ADVICE PLEASE!

Hi ladies - i am back asking for your advice. I have been doing better, but still have a lot of residual pain in my muscles. But the other night, i was outside several hours at a bonfire and it was really coldoutside.
I went inside because i was starting to be in a lot of pain. Well i went inside AND as i began to "thaw out', i was in extreme muscle pain with my muscles spasming and my feet tingling, hurting etc.
The pain was so severe i had to take a percocet; i have no idea if anyone else has ever had their limb pain and neuropathy increase with cold weather.

any of you experience this? thanks girls..... love kimmer

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Hi, Kimmer. Before my cancer treatment, I had gotten sick of having cold feet in during our long Minnesota winters so finally got a good warm pair of boots that were easy to take on and off. My doctor liked my warm boots, said that protecting my feet from the cold was especially important post chemo. So sorry for your pain!
Lisa

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Hi Kimmer: I too have neuropathy from chemotherapy. I am hoping that someone with 'the' answer to the pain from the cold answers your post. I did get a wonderful pair of UGG boots last year, and they are toasty warm...but not enough to stop the neuropathy from getting to me quickly. When you mentioned muscle spasms, and limb pain...I have had that...especially the spasms. I have not been outside for an extended period of time like you were....as I find that I can't walk once my feet start to ache from the cold. I love to be outside in the winter...so I hope there is an answer for us!! All the best! Kathleen

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Sorry, no advice from me. I just wanted to say Hi!

Anne

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I noticed that my neuropathy has worsened since the cold weather came. But this is also apparent in the house.

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Dear Kimmer,
I don't do cold weather well at all. I also have Ugg Boots, and love them. My neuropathy was at it's worst on cisplatinum, and at it's peak it was PAINFUL!!! It did get better, however, and now I just have numbness. I don't know if you are at the peak of the painful stage, or if you have had neuropathy for awhile. Neurontin is used for neuropathy, can you take that? Hope you get some answers, and God Bless You!

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Hi Kimmer, I have extreme sensitivity to cold in my hands and feet since chemo as well. I actually went to bed the other night wearing gloves on my hands because they get so cold and ache when I wake up in the morning. Muscle and joint pain has been ongoing for me since finishing chemo. I don't know if it seems like it's worse because it's colder now or if the joint pain is just getting progressively worse. I take ibuprofen, but it doesn't completely get rid of the pain. Do you have any pain in the heals of your feet? I have pain in my feet, especially my left heal. I saw a foot doctor, and he dx it as plantar faciitis, but I don't think it's that. My gut tells me it's some kind of neuropathic side-effect from the chemo. Whenever I stand on my feet they feel like they're going to break. I hope you find some warm shoes and your problems resolve soon. Keep us posted.

Jen

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Hi Kimmer44,

I haven't experienced your symptoms but just wanted to say that I hope you'll feel better soon.

CALuckyGirl,

I have pain on my heels, especially when standing up from a lying or sitting position. Hurts most in the mornings. I was also told it could be plantar fascitis but somehow I'm not yet convinced.

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Just last week I had gotten my feet wet while walking in the snowy rain then all of a sudden my toes started to cramp. I have neuropathy and believe me I could not walk. I was with my friend and I felt embarrassed because all of a sudden I was reaching out for something to hold. This never happened to me before. I think for me was that I shouldn't have gotten my feet wet at all.

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Hi Kimmer,
I have a similar problem.
During my debulking surgery I lost the use of my right leg due to nerve damage. I also suffer from spasms.
My right leg seems to have a mind of its own, it is not totally connected to the rest of me.
The cold make matters worst.
Although I can not say it is "painful", I would describe the feeling as "creepy".
Kind of like the leg wants to run away down the street without me.
Boy, the peripheral problems caused by this disease!!!
DeDe

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A magnesium deficiency can cause tingling and cramping in the feet and hands I know this from experience. Try taking some magnesium supplements or a relaxing bath with epsen salt. It can also help with constipation

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Before chemotherapy, occasional leg and foot cramps were relieved by taking calcium supplements. Sometimes I would take calcium supplements intermittently, get cramps in bed, take some calcium, and get relief. After chemotherapy, the cramps and neuropathy were sometimes very annoying in bed, but again seemed to respond to calcium. Now I make sure that I eat several servings of green vegetables and take calcium supplements (with D3 and magnesium) each day.

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It could be more than neuropathy. You may have Raynaud's Disease - Google for description. I was shocked to learn what I thought was lingering neuropathy and just cold hands and feet, that I more than likley had this malady.

Try to protect your hands and feet from extreme cold. Even holding a cold glass or bottle can set it off. When my hands get cold and lose color, I put them under warm (not hot) water until the color starts coming back. I am always trying to get my fingers warm. My husband calls me the ice queen...great!

Stay strong!

Angel

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Hi Kim, well you know I have severe neuropathy, and i'm still waiting for a solution. I'll let you know if i ever find one! on a positive note, i am in a very warm climate now and it seems while i'm in the sun and relaxing the pins and needles seem to disappear from my hands and feet, as well as the jumpy legs. I'll let you know how I feel on the 9th when I return to New Jersey.
Love and hugs
Ellen

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Hi Kim
I live in the colder part of Canada, the colder the better because that means it won't snow and I won't have to shovel.
Since chemo, I have found hands & feet cannot handle the cold and this fall I invested in a wrap around throw blanket. I plug it in and within no time I am toasty warm all over right down to the toes.
Judy

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I have neuropathy from my carbo / taxol treatment i have severe nerve damage my internal medicine doctor has placed me on lyrica which does help alot, i also have a pair of Imak gloves that really help keep the warmth in your hands when your out in the cold, i now have hand foot syndrome from the Doxil so i dont worry about the nerve damage as much because i have to keep my hands cold in order to keep the pain from setting in and getting really red spots and blisters on them....talk to you Dr about the neuropathy and see what he says....as i said mine put me on Lyrica (and it's not cheap so if you have insurance it should be covered it's 90.00 for a 30 day supply but in case you dont have insurance there is a company out there called SCBN and they are a prescription advocacy company and they are very reasonable i pay 30.00 a month and get a 90 day supply of lyrica...there number is 1-866-722-6479...hope this helps and good luck......

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Oh 3rdtimes acharm - honey thank u for the sweet advice about Lyrica - tried it - had a severe reaction where every limb in my body shook like a leaf, severe muscle spasms where it felt like my muscles were curling up, toes and fingers were curling up and i had no control over them! i could not walk, couldnt control my walking- it was so scary! So my oncologist said - um no more Lyrica or neurontin for you!!! LOL!
So i have to find a way to deal with this my friend.
thanks for your encouragement - all of you sweethearts.
I love you all, kimmer
May God be with us all!!!

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My wife has peripheral neuropathy from Carbo/Taxol and then (much worse) from Oxaiplatin and 5FU. She has just finished her 12th treatment in a relatively cold UK winter. It has been a tough journey.

She employs a number of ways of managing the numbness, spasms, pins and needles:

Warm gloves and boots ALL the time. She has very thick socks to wear in bed.

Electric blanket in bed - she uses this to get warm if she ever feels cold.

Minimal exposure to outside elements - she wears many coats, sunglasses and wraps a scarf around her face when outdoors. She looks like a escaped psychiatric patient at times but it helps.

High heating bills!


We had a chat with one of the doctors last week and the head chemo nurse and they suggested regular massage/reflexology as a way of helping the nerves to re-learn pathways to the brain. After a week of this she is already saying that she feels an improvement.

Good luck and let us know of anything else that works.

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In addition to magnesium I was told to use L-glutamine powder or capsules. It really helped. I am so sorry for your pain, Kimmer. Good luck!
Dale

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Kimmer,

I think this is a problem for many of us. I think you should not go to a bonfire outing again while it's this cold! Keeping your hands and feet warm is crucial. The pain sets off a cycle and spasms seems like one of them for you.

Jen and Chichie,

It's the darnest thing! But the severe pain in both heels has been an on and off thing for me also. Cannot put any weight on my heels when it happens. Walking on front of the feet is awkward and a problem for falling! Right now it is gone but I expect anything from time to time. I always use a paper towel or hand towel to get anything from the fridge and always wrap my glass with something when drinking something cold.

I just received a warming throw for Christmas and use it every day...it really helps. I think it's time for a pair of Uggs for both of us:)

How is the lymphedema Kimmer? This could be adding to your problem with your feet. Be better and stay warm!

Hugs and love,
Bobbie

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Yes my pain and numbness has gotten worse since the cold weather. I get so cold all the time and have a lot of pain. I have extra socks on and use a heating blanket. Sometimes have to take a vicodin the pain is so strong.
Stay warm and good luck.
Ronda

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