Cold feet due to neuropathy - need help

I started to get an ice cold left foot about 3, maybe 4 years ago. My right foot too but not nearly so bad. I had been told in Jan 2020 that I had high blood pressure and thought the amlodipine I was prescribed might be the culprit. I put up with for some time but eventually visited my GP. He checked my circulation but it was tip top he said. He took blood and tests were done but nothing untoward. So he suggested I monitor it. He retired shortly after.
Subsequently I contacted my GP practice again. I was advised to stop taking amlodipine for a month. I did but started taking again after 2 weeks as my BP was getting high.
I went back to my GPs again some time later, and saw a lady doctor who took blood for further tests. They were again ok but she had missed a B12 deficiency test. She did one and it was OK.
There was nothing left so either BP medication or a neuropathy. I got her to change my BP medication to lercanidipine to see if that made a difference ( still a calcium channel blocker ---could it be calcium channel blocker that is the problem, but unlikely..). She arranged a private consultation with a neurologist. The change of tablet hasn't helped.
I saw the neurologist last tuesday and he performed some tests and arranged a nerve conduction test plus MRI scans of spine and brain I think. These will be done in March.
He wrote to my doctor, copy to me, saying, essentially, that he thinks I have a small fibre neuropathy. But will do the tests.
The soles of my feet feel warm to touch but to me they are ice cold, mainly left foot so I suppose that suggests a neuropathy. Paradoxically, when i go to bed my feet warm up quickly and stay that way all night. I've taken to use a hot water bottle at times eg when playing bridge and my feet get freezing. It makes a huge difference but reverts very quickly to coldness after I stop.
Walking and gym can help a bit. I am still very active and also play competitive table tennis too.
I have had shingles twice and glandular fever when I was 17. I was tested a while back for Sjogren's but it was inconclusive ( I have dry eyes, dry mouth, skin etc, muscle pain, a touch of Raynauds etc). Not sure if these are factors..There is more but I've rabbitted on too long for now..Any comments?

Twins! My feet are cold almost all the time.....except for when they are burning, which is weird when I put them in cold water and they still just burn away there. I just did all the same tests you have coming up (Brain MRI, nerve conduction, punch biopsy) and have the SFN diagnosis with possible Sjogrens. I see that I am falling behind you in fun activities, though. I need to learn table tennis and bridge! 😀
Hang in there. And, don't do what I did--have ALL those tests, one after the other, in the same week. I freaked, my insurance freaked, it wasn't a wise choice. :0

Hang on you two.....@ebero and @smiddy73.....I want to try out for your team. Heaven knows I qualify. It's been 11 years since I was diagnosed with SFN (small fiber neuropathy. My feet are also cold almost all the time. When my life partner feels them, he says they are warm to him. At first, I thought he was teasing and then my MFR therapist told me the same thing. She works on my feet twice a week to keep the numbness under control in case I have to drive. She also notices when my toes are purple. Do yours change color? I just checked and the right one is very purple and colder than my left foot.

I don't play bridge but I do play mahjongg. Since I also have MCI (mild cognitive impairment). I could never learn bridge. My mahjongg partners very kindly help me. So sometimes I just give up and let them win as a reward.

At this point in my life, I am focusing on "Quality of life" choices meaning that I will work hard to gain some tolerance for these symptoms. However, I have a wonderful partnership with my PCP who I met right after my SFN diagnosis. We are good examples of shared decision-making. Just this week she reviewed my medications and realized that my urinary incontinence medication was not a generic and the price was elevating. So she did the research and found a substitute covered by my insurance. I'll take that kind of interest and commitment any day.

May you both have peace and ease in your lives.
Chris

Like @jeffrapp , any contact, even loose socks, cause burning pain for me. The irony is that I have the burning pain simultaneously to really cold feet. I think that I've just gotten used to the coldness, uncomfortable as it is some of the time. My wife knits me a pair of wool socks every year for Christmas, but I have to wear a thin pair of cotton socks under them because the knits and purls hurt my feet. She's a little offended by that. But she doesn't have CIDP.

I also get shoes that are a size larger so there's room for extra insoles, and extra room for my toes.

Isn't neuropathy an interesting thing?

Jim

I started to get an ice cold left foot about 3, maybe 4 years ago. My right foot too but not nearly so bad. I had been told in Jan 2020 that I had high blood pressure and thought the amlodipine I was prescribed might be the culprit. I put up with for some time but eventually visited my GP. He checked my circulation but it was tip top he said. He took blood and tests were done but nothing untoward. So he suggested I monitor it. He retired shortly after.
Subsequently I contacted my GP practice again. I was advised to stop taking amlodipine for a month. I did but started taking again after 2 weeks as my BP was getting high.
I went back to my GPs again some time later, and saw a lady doctor who took blood for further tests. They were again ok but she had missed a B12 deficiency test. She did one and it was OK.
There was nothing left so either BP medication or a neuropathy. I got her to change my BP medication to lercanidipine to see if that made a difference ( still a calcium channel blocker ---could it be calcium channel blocker that is the problem, but unlikely..). She arranged a private consultation with a neurologist. The change of tablet hasn't helped.
I saw the neurologist last tuesday and he performed some tests and arranged a nerve conduction test plus MRI scans of spine and brain I think. These will be done in March.
He wrote to my doctor, copy to me, saying, essentially, that he thinks I have a small fibre neuropathy. But will do the tests.
The soles of my feet feel warm to touch but to me they are ice cold, mainly left foot so I suppose that suggests a neuropathy. Paradoxically, when i go to bed my feet warm up quickly and stay that way all night. I've taken to use a hot water bottle at times eg when playing bridge and my feet get freezing. It makes a huge difference but reverts very quickly to coldness after I stop.
Walking and gym can help a bit. I am still very active and also play competitive table tennis too.
I have had shingles twice and glandular fever when I was 17. I was tested a while back for Sjogren's but it was inconclusive ( I have dry eyes, dry mouth, skin etc, muscle pain, a touch of Raynauds etc). Not sure if these are factors..There is more but I've rabbitted on too long for now..Any comments?

Hi there @smiddy73, welcome. Thanks for your reply to one of my older posts. I feel for your situation and understand how complicated it can be having a plethora of symptoms while trying to be patient and optimistic throughout testing and diagnosing. Your neurologist seems to be right on par with trouble shooting and it sounds like you're in good hands.

Luckily, you've come to the right place by finding Connect. There are so many helpful folks here that offer great suggestions and share common experiences. I love the fact that you're keeping up with physical activity. That is so important! I recall being scared of what I used to feel in my body, but these years later I've come to find acceptance and ways to work through pain, discomfort, cold feet and all.

Like @minfromtexas finds distraction through art, reading or exercise, I also use distraction as a tool. Humor is a good distraction - funny movies, pod casts, comedy shows. Journaling is great for mental health to release swirling thoughts or fears. On the flip side, journaling is also great for finding gratitude and shifting mindset to what is good in life and what we CAN do. You will find a neuropathy ally in @artscaping who shares a wonderful outlook of honing in on a quality care plan. Mindfulness, deep belly breathing and meditation helps many of us keep calm and cope with neuropathy symptoms.

You asked for comments as you ended your post...my final comments are that you appear to be very resourceful and determined to persevere. With a little help from Connect and it's members, I have a feeling you will manage whatever comes your way, neuropathy or not, and keep on playing competitive table tennis (which is awesome by the way)!

Will you report back on the March testing results?

Jim, I too have CIDP with neuropathy (up to my knees). I have lupus which also causes Raynauds like Chris described (purple toes). I take a medication for Raynauds and high blood pressure (amlodipine) that helps both and I know it helps the cold feet. You both might ask your Drs about a low dose of it to help the circulation in your feet. It relaxes arteries and improves blood flow to the feet. As long as your BP isn’t low, it should be fine to try.
I’m going to try your ideas for warming my feet!