Cold feet due to neuropathy - need help

@leannestork here is the direct link to @delia74's earlier post she referenced above - https://connect.mayoclinic.org/comment/896114/.

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!💖

@leannestork here is the direct link to @delia74's earlier post she referenced above - https://connect.mayoclinic.org/comment/896114/.

Hi, I have symmetrical sensory neuropathy (large fibre) I suffer terribly with the cold feet, even in the summer months, it was a constant for around 4 months, soak your feet in warm water for 15 mins and good socks after, that is the only thing I can suggest that somewhat helps me, luckily now, mine does come and go but the colder months can be tricky X

Welcome @lisaklisa, Thanks for sharing what helps you. I definitely agree that the Winter months can geta little tricky, especially if you live in one of those states where the temps drop pretty low in winter. The past few years I've gotten by with using thermal neoprene toe sleeves along with a set of foot warmers that stick to the bottom of my socks and slide into the shoes.
-- https://www.amazon.com/Hot-Sockee-Neoprene-Warmers-Construction/dp/B076B4PDZR/

How long have you been diagnosed with neuropathy?

Hi @johnbishop … I initially hurt my back in nov 2021 where the neuropathy presented itself in both feet, it was always assumed it was related to the back, the back MRI proved all was well but the neuropathy then started presenting in both hands in the stocking and glove pattern, I was only diagnosed this month with the symmetrical neuropathy although it’s looking very likely I have MS also, so I’ve absolutely had better times. I will take a look at the socks thank you

What neuropathy do you suffer with?

Hi @lisaklisa, I was diagnosed with idiopathic small fiber peripheral neuropathy in 2016 but have had it for well over 25 years. Fortunately, I only have numbness and some tingling in the feet and legs. I shared my neuropathy journey in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.

@leannestork here is the direct link to @delia74's earlier post she referenced above - https://connect.mayoclinic.org/comment/896114/.