Raynaud’s syndrome and neuropathy

I read someone’s post here about sleeping with loose warm socks. My feet are always frozen. Since, I started doing that I sleep a lot better. My feet do not get as cold. I can’t feel them anyway but if they brush up against my leg they are cold. I put them on my husband he comes unglued. I do not know if you have this problem but my hands and feet freeze the rest of me sweats at night no matter how cold it is. I sleep with three fans blowing. I sleep with the air conditioner set at 50 during the winter and freeze everyone else out. Still hands and feet are like ice and I am sweating and drenched. I was diagnosed with Raynauds before the neuropathy.

Thanks for sharing. Yes, freezing hands and feet, but my body feels too warm so I also keep the heat low. My feet don’t like to have much weight on them, so I sleep with a blanket and keep a heating pad by me to warm the cold bits as needed. It seems like there is no cure and I worry that it will just get worse. Have you found any treatments that have helped you?

There is a prescription pain medication that I am calling to get the exact ingredients and posting on this website. I went through RN school. The first thing in anatomy and physiology they teach you is nerves do not regenerate period no matter what. I have several issues that go to the neuropathy. I have small fiber neuropathy with dysautonomia (autonomic neuropathy) it affects my heart (bradycardia/tachycardia beats too slow or too fast), kidney, bladder ( lose control and go all over yourself in public - I have discovered go every hour even if you do not think you have to go lessens the chances of urinating on yourself in public) gastroparesis( slow digestion can go days without eating. Then you have the severe axonal sensorimotor polyneuropathy. I have both peripheral and motor neuropathy. The doctors do not tell you how this progresses. I have lost muscle in both my feet because of the neuropathy. When I walk it feels like I am walking on bone. I can’t feel my hands and have cut them over three times in one month requiring stitches. Nothing better than cutting up an onion look down to put it in the pan and your onion is covered in blood. Rinse off onion trip to emergency room after three hours of bleeding. Lymphedema since your nerves run off of the autonomic nervous system the arteries/veins no longer work and the blood pools in your legs. (Edema I have worn TED hose for over 15 years medical compression hose 20-30 requires prescription) The cardiologist has ordered my a lymphedema pump and leg things. There is a treatment but once started you take it for the rest of your life. If you stop it speeds up the progression. IVIG/ prednisone therapy will slow it down. Instead of it being IV you can get it subcutaneously just below the skin. This can be genetically handed down to your children and they recommend genetic testing for you and your children.
Since, it affects the heart there is nothing that can be done. No pacemaker or defibrillator because you do not have the nervous system for it. My husband has revived me several times when he got up to go to the bathroom in the middle of the night and I am not breathing. He shakes me until I start breathing. It scares him really bad. It does no good to call 911 because shocking the heart will not work. The neurologist was not up front with me. He tells me as it happens quite frustrating.
There is a really good video on YouTube by Dr. Anna Outlander. My neurologist has put in a referral for me to go see her. University of Boston one thing interesting in her lecture it talks about nerve regeneration with medical marijuana. She did a study about it. It does not say what she used in the study. Texas is not a medical marijuana state. The second location I have been referred to is the University of Heidelberg Germany that have a lot of information and research also. We shall see which one I can get into.
One thing in that lecture you will learn is they have to find the etiology (cause) of the neuropathy to treat it. I have hypothyroidism but I do not believe that is my cause as fast as it is progressing. They have not done the genetic testing on me. One thing I have learned is very few doctors specialize in neuropathy. You look at there profile and it’s seizures, Parkinson’s migraines.

My comment on hormones may only be helpful for women. When I stopped taking estrogen patch (was taking due to endometriosis pain), I was surprised that my body temperature went up. Now my feet are warm. Hands still get cold from Raynaud’s. When fingers go ghost white, I run hands under warm water and massage them.

Good to know! I'm on the lowest dose patch and my body temp is always low. 1 more reason to stop the patch.

I was on the lowest dose also and it was simply time to go off. Everyone is different, but kinda makes sense as estrogen controls hot flashes

@ogl and others, there is another discussion that you also might want to read through.

Raynaud's Syndrome: Anyone want to talk about Raynaud’s?: https://connect.mayoclinic.org/discussion/raynauds-syndrome/

This will be a long response as it is about 2 separate conditions.
Firstly, I suffer from extremely cold feet but excessive sweating on my face and scalp. I have been diagnosed with limited CREST syndrome approx 15 years ago, it was mainly the Reynauds part that affected my hands. The head sweating I put down to hormones/menopause/ my father was the same. I have bought so many personal fans (hand-held, round the neck etc) and sometimes before going out I would put a wet cloth on the back of my neck, or tried rubbing peppermint oil back of neck, tried "face deodorants ". I finally did some research and found the name of my condition (craniofacial hyperhidrosis) and it can be treated with ditropan. I was prescribed Oxybutynin and it has changed my life!
But back to the cold feet at night (even on hot nights, I live in Australia)- I thought it was the Reynauds and started soaking my feet in warm water before going to bed, then started wearing socks, then needed heat packs at my feet, then progressed to heated socks (fabulous!) And then ugg boots as well. I was diagnosed with peripheral neuropathy about 3 years ago, at first the Neurologist thought it could be attributed to the chemotherapy I had in 2018. They consulted with another Neurologist and did a range of blood tests and discovered my body was making an additional protein, so I was also referred to a haematologist. The medical term is 'highly positive paraproteinaemic (anti-MAG) neuropathy' . Between the 3 of them they came up with a treatment of an infusion of rituximab. After more blood tests, the conclusion is that my condition is not 'better ', but it hasn't worsened. This is all I can hope for- to stop it getting worse. So I have 6-monthly blood tests and seeing the Neurologist. And yes, I still need my heated socks and ugg boots! But I was impressed with the initial Neurologist, who was determined to find a treatment- even doing research on their own time and calling me at home on a Sunday night! The Haematologist was also very invested, and found an article about "Efficacy of rituximab in anti‐myelin‐associated glycoprotein demyelinating polyneuropathy: Clinical, hematological and neurophysiological correlations during 2 years of follow‐up...", in Wiley Online Library. Unfortunately I can't post a link (being a new member of this group) but you can google it.

I am glad you are maintaining and it’s hopeful that there are medical professionals that do care and don’t just whisk you away. 20+ years and hopeless in SW FL for care or interest. Thank goodness for AI and this Mayo Forum.

Welcome @gnat07, Thanks for sharing your experience. Since new members are not allowed to share links for a short period of time to protect our community from spammers, I thought I would share the link you mentioned for you.
-- Efficacy of rituximab in anti-myelin-associated glycoprotein demyelinating polyneuropathy: Clinical, hematological and neurophysiological correlations during 2 years of follow-up
https://pubmed.ncbi.nlm.nih.gov/36083713/
I'm tagging @mcden who started a related discussion:
-- Craniofacial Hyperhidrosis - Any Information about treatment?
https://connect.mayoclinic.org/discussion/craniofacial-hyperhidrosis-any-information-about-treatment/