Severe cold pain in legs

Posted by rappva13 @rappva13, Nov 27, 2019

The cold pain feels like my bones are made of ice. This is a chronic situation I've had these pain for over 55 years. It comes and goes, not due to activity.
Waiting for testing for small fiber sensory neuropathy (feb 2020) . Pain is getting greater and lasting for longer.

Yikes! Sorry to hear this 🙁 Had you previously spoken to medical professionals about your symptoms?

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@iceblue

Yikes! Sorry to hear this 🙁 Had you previously spoken to medical professionals about your symptoms?

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On and off for years. First told it was growing pains, then due to being overweight. I loss over 240 lbs. They just don't have any answer. Have to wait to February for next test.

Liked by iceblue

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@rappva13

On and off for years. First told it was growing pains, then due to being overweight. I loss over 240 lbs. They just don't have any answer. Have to wait to February for next test.

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Not having answers is SO frustrating! I believe many members of this forum have had similar experiences. I know I have. Partly – it's because you have no idea how to treat the symptoms – and partly just because we want to know what we are dealing with. Can it be cured? Will it get worse? I know one of the first questions I asked was whether my mobility would be impacted over the long term. I was told my mobility would not be impacted – but honestly, I am not sure I believe that…

Fingers crossed that you get some answers in February!

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I am so sorry. Do you have good blow flow to your legs and feet? Have you tried compression stockings? I get Reynaud's so bad in my hands. If I wear fingerless compression gloves, I can get by and never have Reynaud's again. That seems to work for cold hands. That just sounds miserable.

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@rappva13, I have similar symptoms with my feet and legs. My feet are always cold and numb. I've always thought that it was more to do with my small fiber peripheral neuropathy than anything else. I also had some swelling mostly in my right leg for an extended period of time a few years ago. I was diagnosed with lymphedema and started wearing compression socks so now I have cold legs and feet that are constantly being squeezed. In the summertime it's not too bad. My feet don't seem to feel as cold but in the wintertime it's a problem for me. Especially if I have to spend time outside moving snow. I found a little help wearing loose fitting wool or heavier socks over the compression socks. I also find that it helps to keep the feet and legs skin moist using a body moisturizer lotion. I think this is important because the small fiber nerves are close to the skin and if your skin gets really dry it can make it worse.

I've had numb feet for over 20+ years before I bothered to get it diagnosed, mainly because it was just numbness with no associated pain. You describe your pain/cold symptoms as coming and going which may be a good thing. Here's an article from Medical News Today that may provide some help:

Causes and remedies for cold feet
https://www.medicalnewstoday.com/articles/320327.php

I can tell you that you are not alone and I'm sure other members on Connect share your symptoms. You mentioned that the pain is getting worse. Did the pain start in your feet and gradually go up into your legs?

Liked by red3

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Until you can find a cure for this – I recommend you find long silk underwear – there are also tights made of wool you can buy. Many places sell different weights of silk long johns – You can get it super thick and you can get it light – I wear the lightweight silk longjohns here in Northern California. Lands End has some long silk underwear – buy enough to get you by for now – and then watch for sales and stock up. You can buy silk socks as well – they call them sock liners. The other thing is Garnet Hill sells cashmere socks – cashmere is 8 times warmer than wool. Smart Wool makes a line of underclothes – long johns – that are very effective at keeping you warm. I know it isn't a cure – but it will make you more comfortable. I am wearing long johns right now because it is in the 40s and my house has no insulation!!!

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One more thing – have you all had your thyroid checked by a good endocrinologist? I was feeling like my bones were made of ice too! Then I got my thyroid adjusted and I am much warmer.

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@iceblue

Not having answers is SO frustrating! I believe many members of this forum have had similar experiences. I know I have. Partly – it's because you have no idea how to treat the symptoms – and partly just because we want to know what we are dealing with. Can it be cured? Will it get worse? I know one of the first questions I asked was whether my mobility would be impacted over the long term. I was told my mobility would not be impacted – but honestly, I am not sure I believe that…

Fingers crossed that you get some answers in February!

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I agree with all the unknowns you mention.

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@parrotqueen

I am so sorry. Do you have good blow flow to your legs and feet? Have you tried compression stockings? I get Reynaud's so bad in my hands. If I wear fingerless compression gloves, I can get by and never have Reynaud's again. That seems to work for cold hands. That just sounds miserable.

Jump to this post

Yes they did pressure checks on by legs, and said the blood flow was good.

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@johnbishop

@rappva13, I have similar symptoms with my feet and legs. My feet are always cold and numb. I've always thought that it was more to do with my small fiber peripheral neuropathy than anything else. I also had some swelling mostly in my right leg for an extended period of time a few years ago. I was diagnosed with lymphedema and started wearing compression socks so now I have cold legs and feet that are constantly being squeezed. In the summertime it's not too bad. My feet don't seem to feel as cold but in the wintertime it's a problem for me. Especially if I have to spend time outside moving snow. I found a little help wearing loose fitting wool or heavier socks over the compression socks. I also find that it helps to keep the feet and legs skin moist using a body moisturizer lotion. I think this is important because the small fiber nerves are close to the skin and if your skin gets really dry it can make it worse.

I've had numb feet for over 20+ years before I bothered to get it diagnosed, mainly because it was just numbness with no associated pain. You describe your pain/cold symptoms as coming and going which may be a good thing. Here's an article from Medical News Today that may provide some help:

Causes and remedies for cold feet
https://www.medicalnewstoday.com/articles/320327.php

I can tell you that you are not alone and I'm sure other members on Connect share your symptoms. You mentioned that the pain is getting worse. Did the pain start in your feet and gradually go up into your legs?

Jump to this post

the pain started in my feet and has moved above the knee. I've tried compression socks I will have to try the socks over the compression socks. My feet and legs don't feel cold to the touch. The cold feeling is coming from the inside. But I will try your suggestions though.

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@parrotqueen

One more thing – have you all had your thyroid checked by a good endocrinologist? I was feeling like my bones were made of ice too! Then I got my thyroid adjusted and I am much warmer.

Jump to this post

I was border line years ago, maybe I need to have it checked again. I need to find a new doctor he is just making money doesn't really care about the patient.

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@rappva13

I was border line years ago, maybe I need to have it checked again. I need to find a new doctor he is just making money doesn't really care about the patient.

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I know the pain of which you speak! I still get it from time to time, but, not nearly as bad as before. What has changed? Three things. 1. Medications: I now take Lyrica. 2. Diagnosis: (not as the cause of the pain, but, I think it is!) of Rheumatoid Arthritis and Fibromyalgia. 3. I retired. This means I am no longer sitting still 8 hrs a day at a desk in a freezing office.

Have you been tested for autoimmune diseases? (RA, lupus, etc)? Don't let a dr just do the RF test and tell you it is negative. They should do a test called an ANA panel, which tests for about 7 different things. If there is a positive result, they should do more testing to narrow it down. No doctor has ever been able to tell me why I find the cold so painful. I do know that the lyrica seems to make the difference.

sorry you are going through this!

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