Sensory-motor PN and feeling "chilly"?

Oh, this neuropathy and what it does to us. I am so grateful for Connect because I’m sure my people are so tired of hearing me whine. Initial diagnosis in 1921 with EMG. Started on gabapentin which has done me no good and I’m trying to titrate off of it. Now my symptoms are ice cold feet, alternating with burning hot feet, which makes my legs and then the rest of me cold. Couple weeks I’ve noticed my fingers get numb and I itch. Started with my cheeks itching, my eyebrows, and now my scalp. I’ve injured my back several times working as a nurse lifting patients, but I’ve never had a specific back injury or surgery. My physical therapist thought my feet and leg symptoms were from old low back injuries but if that was the case, why now are my fingers getting numb and I’m having this itching on my face and my scalp? Like the members above my temperature changes, especially the cold, make me wear extra clothes all the time, and I can’t stand to be in air-conditioning so no one wants to go anywhere in the car with me! I own a half a dozen heating pads that I use when sitting and at night in the bed. I’m grateful I don’t have all of the symptoms that has been mentioned in the above posts. At least I can walk with my walker and I’m still driving but sometimes I’m not sure that I should. Boy am I tired of all of this. I’m not going to get this year’s Covid booster because it sounds like so many of you feel like you developed neuropathy after your Covid shot and I don’t want this to get any worse. Now I’m wondering if the numb fingers and the itching are from trying to titrate down from the Gabapentin. My PMD has no suggestions and I have not been to a neurologist because it sounds like you guys have gotten no solutions from the neurologists that you’ve seen. Has anyone seen a helpful neurologist in Colorado Springs or Pueblo Colorado? I’m about an hour away and would consider seeing one if I thought it would do any good. Any suggestions would certainly be appreciated and the support on Connect is what I live for. Winter coming on in Colorado makes me just want to crawl in bed between the electric blanket and the heating pad and not get up. Not looking forward to winter at all. Wishing all of you blessings and hopefully some peace. Bcool123

It has to deal with the neuropathy and reduced blood flow. In Texas when it was 115 degrees with a higher heat index. I was wearing long sleeves and a sweater. I keep one in my car at all times to be prepared. I liked it so much that I bought two from old navy. It also has two pockets that help me carry water and other things. I was with two crutches the kind that wrap around your arm.

Since you live in Colorado I would recommend you get a referral to doctor Ann’s Louise outlander ( research neurologist) yes she is at the University of Boston. You need to see a neurologist and find out what type neuropathy you have. What is the etiology. I ended up with genetic testing since I do not know my biological father’s side of the family. Here is my reasoning for wanting to see her. One what type marijuana did she use in her study? Has she considered a study with IViG/prednisone and medical marijuana together. Build up our immunity with the IVIG therapy use the marijuana for nerve regeneration during that time. I took IVIG therapy growing up. Being a RN it comes subcontainously ( can’t get it to spell right) so you could administer it yourself. I am allergic to over 50 different medication's due to a drug allergy to sulfa, sulfites and sulfomides medications Gabapentin being one of them. I have to look carefully at the inert ingredients and what is the capsule made out of. Dr. Outlanders lecture is on you tube and it’s not the whole lecture. I imagine it’s in the journal of neurology. Here is what I think is interesting about the study. One we are taught in college in anatomy and physiology that nerves do not regenerate period. In her study that lasted over a year she had two groups one IVIG/prednisone group two medical marijuana.
The thc in medical marijuana cause nerve regeneration. They are not sure about the mechanism of thc how it regenerates the nerves but it has been proven more than once medically. I have spoken to my pain management doctor and my neurologist they are aware of the study. My pain management doctor says there has been more studies with medical marijuana and nerve regeneration. He said they still do not understand the mechanism behind it. I did not catch what type medical marijuana she used. I never knew so many different types until I walked into a dispensary in Colorado. The first thing is you have to find out what is the etiology (what’s causing it) then treat the underlying cause. Mine is Hashimotos disease (hypothyroidism) I live in Texas where only 1% thc is allowed which does nothing. Does not take away the pain. They charge 100.00 a bottle which cost over 500.00. That’s crazy when you can walk into Colorados dispensary and the cost is a ton cheaper. Currently, we are stationed in Germany where medical marijuana is allowed but I have not tried it. We are hoping to be stationed in COS at Cheyenne Mountain when we come back in Dec 2024. My husband works for the Department of Defense, After listening to part of her lecture I am interested in more. I am going to ask my neurologist for the whole study information to read through it and a referral to go see her. I have a lot of questions for her. Please go see a neurologist and find out what’s causing it. Just do not ignore it hoping it will go away it progresses. It has destroyed my life.
My heart started after my second Covid shot two months later. Never had heart problems previously. It jumps between bradycardia /tachycardia. Scared me to death my heart jumping in my chest. Sometimes my heart stops at night when I am asleep my husband shakes me until I start breathing again. No I do not have sleep apnea been tested. The cardiologist did a one month holter monitor test on me. He gave me an article out of the journal of cardiology to read. Yes, it came out the military covered up this side effects while making everyone take these shots. It scared me because my youngest was born with congenital heart disease and got an ICD at the age of 14 and he has tachycardia. I did end up with Covid two months after my second shot and a couple of years later. I should have gone to the hospital but I refused I told my family that’s signing my death certificate. Anyone who goes in rarely comes out with Covid. My doctor treated me with high doses of Kflex, atrovent and pulmicort through nebulizer machine lasted over a month. I am also asthmatic so the likelihood of it turning into pneumonia was good. Kept everyone out of my room. Bottom line it is not the gabapentin but the neuropathy. I have had friends tapered off of gabapentin for MS. She thought she was loosing her mind because she kept forgetting things. I told her about that being a side effect of the gabapentin. She came off of it and felt a lot better. Please see a neurologist. You need the testing and find out what’s causing it. Yes, we may not have had a lot of luck with some of them but mine passed away last year. He was awesome.
This disease for some of us progressed quickly.

This thread is very informative. I may be too accepting of all the weird and unpleasant sensations I have. I kind of gave up on getting a diagnosis. I have had a lupus diagnosis, been told I might have MS, high antibodies for scleroderma, autoimmune reaction to cancer, abnormal brain scan....but I just keep going because there don't seem to be any answers. So this thread interests me a lot!

It's your SFN. SFN screws up your body's ability to cope with temperature. Chills, night sweats, and not being able to sense temp changes are common. I check the weather several times a day and dress in layers so I cope with unexpected reactions

I have poor temperature regulation. Cold when others are not and hot when others are comfortable.
Some one thought hormones but neurologist said it was likely autonomic deregulation related to polyneuropathy.

Yes that’s the bad thing about neuropathy. I am freezing and it’s 104 in Texas during the summer wearing long sleeves. I keep a sweater (cardigan) in my car. When I worked I kept a sweater always at my desk. I also keep a blanket to keep my legs warm.
Unfortunately hormones have nothing to do with it. I tried to blame menopause but my mother said it does not work.

Hello, I have neuropathy in my hands, both feet and right leg/buttocks from spinal cord damage (cervical myelopathy). All my affected areas almost always feel cold (sometimes they are cold to the touch but other times they are not) despite the “burning” pain (weird contradiction)! I wear socks to bed now and warmer pants than I ever wore before.

As if I needed further proof––

Mine is large fiber PN: no pain, but a problem with balance & walking. The other evening, I was with a group of friends. One friend has PN, a by-product of her chemo. In the room, everyone professed to be comfy (70º temp.), except for my PN/chemo friend and I. She and I alternated between comfy and chilly all evening long, strangely enough, at the same times. I'd see her pulling on a sweater, she'd see me pulling on a sweater; I'd see her taking off the sweater; she'd see me taking off the sweater––and, from opposite sides of the room, we'd wave to each other: fellow PNers feeling the room temp go up and down and then up again! 🙂

I've had night sweats some nights, others I would wake up freezing and need another blanket, even though the thermometer is set the same every night. I hadn't considered my PN would affect my ability to deal with cold or hot. That reduces my concern that it's my heart.

This brings up the question, has anyone connected PN with heart disease?