Cold feet due to neuropathy - need help

I just mentioned to my psychiatrist that it felt like frostbite. When my feet feel really cold I have noticed that they are also blue to purple. I vigorously massage and do something to warm them like thick socks. My neurologist or cardiologist can't explain this. It is a passing symptom.

I have Small Fiber Neuropathy that affects feet and hands. For a few years now, I've been using heated gloves and socks purchased on Amazon and I mostly use mine indoors.
The batteries are rechargeable and the fabric has held up well.

I have had the cold feet, they’re not really cold, just the brain getting the wrong signal. I would use a hot water bottle until the cold subsided, this usually works until they get cold again.

I think this problem is quite common. After a couple of years of cold feet, I bought a warming pad to but my feet on when I sleep. I live in the Northeast, so the only time I can do without my foot warmer is July and August.
Here's is one tip I know I am repeating myself. I wear a product called "SootheSocks" during the day. When I go to bed, I take them off. My feet are warm...not like they used to be before the compression socks. But, no foolin' around, get in bed, take my ZZZ pill and I'm ok. My feet feel "normally in the morning BEFORE I move them. Then, same old, same old....different Day!

When my neuropathy first started that is exactly how mine started. They found a blockage in my right leg and had to have a stent put in. Im not kidding when I say that after going home my foot pain went off the charts but over time my foot pain has subsided. No more the frostbite feeling but from time-to-time sharp stinging and of course the numbness never goes away.
Hope this helps but I know isn't great news.

Thank you so much. You write so fluidly that I feel like your response is a video. Right now, I am somehow prone to purple feet. Do yours change color? My therapist told me yesterday that she has never seen them so cold. Hmmm???? So.....do I take another look at my medications? I have reduced my Gabapentin recently because for me it can present a fall risk.

Shoot! I remember when I was icing my feet at night because they were too hot. It does seem like this neuropathy business has a mind of its own. Sort of like when you think you have it figured out......the next day it changes. Thanks for sharing. Perhaps others would like to add some of their experiences for us.

I think I will toddle into bed now and snuggle up to a couple of warm feet.

May you have happiness my dear and the causes of happiness.
Chris

You are so funny! I don’t know how we could get through all this without a sense of humor. Usually when I’m in a doctor’s office, my feet are somewhat normal, unless I’m at the dentist, and he certainly isn’t interested in my feet. So my main docs haven’t seen my feet when blue, but they take my word for it and since they aren’t blue at that moment, it helps validate to them when they feel them that circulation is ok?
It’s good you have warm feet in bed to help. I recall a woman on here (I think) who said she took fur coats and made them into something useful for PN and bed time. Maybe it was for foot warmers, could have been whole body. I recall thinking her solution was brilliant, but I never owned a fur coat, (even fake) in my life, though her suggestion to folks was to check out Goodwill..

I have endured Raynaud's and neuropathy for many years. My peripheral neuropathy is not related to diabetes. Despite extensive testing with different doctors, no one has any idea what the cause is. So I (like so many people do) just deal with it, roll with the punches. I also have several complicated health issues that probably add to the problem. I've also had three serious episodes of Lyme disease (each calling for intervention of drugs, including IV therapy). Lyme disease caused me to then avoid activities that I used to enjoy, like gardening, landscaping, going for walks on trails.

My toes always feel either tingly or numb. Tops of feet are affected also, and a fall accident back in June '21 just layered on more pain issues related to the trauma to ankle/foot/lower leg. NEUROMAS were discovered following that fall, and those neuromas (along with a hammertoe) can erupt into serious agony from time to time.
The RAYNAUD SYNDROME oftentimes creates unbearable coldness, even with socks on (which I wear to bed ALWAYS; I have nice LOOSE ones that don't bind designated as bed socks).
BOTH feet can turn a painful, NASTY DARK BLUE, especially the right foot, with the skin of toes (and nails!) affected as well. The soles will appear to be dirty due to the discoloration😱. A few years ago, when I stubbed my right foot and heard a nasty "crack" sound, my husband took me to the ER. I was mortified to have the foot examined. I rushed to explain to each person attending to me that no, my foot was NOT dirty, it was due to Raynaud's😊.

Hands/fingers can turn various shades of "bruised blue-black" also, with tips of fingers and nails not only feeling icy but also ARE icy cold. It can be very painful. Thankfully, this is not 24/7, but it can happen during warm-hot weather as well, causing me to wear gloves indoors as well. In cool-cold weather or indoor temp, the affected areas will react within minutes, even if protected.

So what "helps"?🤔
•wearing non-binding socks. My vascular cardiologist had recommended compression stockings for issues with my legs and I found the compression on feet was unbearable. Will be having procedure at end of this month to address collapsed valves in veins.
•alpha lipoic acid supplement. Check with your rheumatologist/endocrinologist as far as quantity/dosage. A sage rheumatologist (now retired) prescribed this in place of the gabapentin (prescribed by a neurologist) which I could NOT tolerate at all (hallucinations, hung-over feeling, etc.). Despite what I describe above, ALA has helped over the years although aging (turning 75 next month), trauma, and spinal stenosis/sciatica have contributed to my present problems. The ALA also helps with CNS issues.
•daily vitamin supplement containing B vitamins.
And a neurologist prescribed a monthly injection of B-12. I can't imagine how much worse my situation would be if I were to discontinue these....the injection was prescribed 9 yrs ago, when brain demyelination and related symptoms were discovered. The monthly dose has helped to keep good blood readings (had shown deficiency before).
•placing feet in very warm (NOT HOT) water for short periods of time (about 10-15 minutes). I find that this is beneficial when the sensation of coldness results in Pain Level from 5 to 7. Great before bedtime also, followed by gentle massage, Emu cream (I don't like smelly, burning ointments), and of course LOOSE SOCKS.
•Avoid those foot bath items wherein you immerse your feet; not at all recommended for anyone with diabetes (which thankfully I don't have) or peripheral neuropathy.
•a heating pad, set on WARM, NOT HOT. I do this when watching TV. Again, short period of time, not prolonged.
•a pain cream whose odor and intensity you can tolerate; many on the market. I can't tolerate any except for Blue Emu (no smell, no sting, does help to a good degree). VICKS also helpful, but I can't tolerate that smell either. You may want to try it; socks will protect your linens.
•"exercise" your toes and fingers, by flexing them, splaying them apart, and include movement of hands/feet to circulate your blood. Easy to do while watching TV, can do during breaks while sitting in front of computer.
•LOOSE BED COVERS to avoid pressing down on feet. Don't permit covers to pull down on toes.
•AVOID as much as possible being in an environment that will trigger intensity of your symptoms. That includes cold produced by AC as in malls/warehouse stores, or by refrigerated areas of supermarkets. I always have a pair of those stretchy gloves in my bag, and will take along a light sweater/cardigan. Our AC is kept between 72 to 74 (hubby has rheumatoid and osteoarthritis).
I used to shovel our driveway, steps, and walkway. Not any more! The family that moved in across the street became our angels: The three children (and sometimes Carolyn the mom helps) do the steps/walkway, and the father uses his snow thrower on our long driveway. When he's away on business, his wife takes over doing the driveway. They won't take any payment, except for the baked goods that I give them. They especially like my brownies (I created the recipe, which includes reduced quantity of organic sugar, omega-rich walnut oil and applesauce, almond flour, powdered milk, and other good-for-you ingredients). I'll "surprise-bake" for them at times other than the winter, with breads, muffins, cookies, etc.
•I avoid alcohol. Had to give up Corona (along with many other things) when I learned that I was seriously gluten-sensitive, and also occasional small serving of my favorite Pinot Grigio. A small price to pay to help reduce/avoid aggravation of symptoms. Besides, with the prescription medications that I take, alcohol is a no-no.

I've written a book here! I did want to share what works/what doesn't. And to encourage you to learn to listen to your body, and respect what it is saying to you. Seek help outside the box of conventional medicine. With all my pain issues, four doctors in my medical team highly recommended I consider medicinal marijuana. I resisted for a long time, but finally sought help from my primary (she had been recommending MM for over two years), got the referral to the doctor within the practice that is designated for this, and this week received the necessary approval papers so I can obtain the MM. Have not started using the gummies yet, as I want to wait until after the upcoming surgery.

One last comment: Look up info here on this site for use of scrambler therapy/low level laser therapy for neuropathic pain. Via the sites, I learned a great deal and found one doctor within our county that employs it (has done so for over 30 yrs). Unfortunately, private practice, accepts only specific insurances. Not a possible avenue for us at this time.

Best of luck to you!💖

I live with constant pain in my legs except when I am in my recliner. I went thru a course of treatment at a pain clinic stopping short of any kind of surgery due heart risks. Nothing helped. I am not certain if my pain is due to a neuropathy or spinal scoliosis is present in the lumbar area. Is there anyone that can help me know which it could be and what I can do about it?

Hi there. Try to find some extra thick bamboo socks… I wear them day and night. Take care