Temperature intolerance and sensitivity - Autonomic Neuropathy?

@kyc117 and others - Here is the previous discussion on heat intolerance. Maybe it has useful info to add.

@lorirenee1 I wasn't aware of cold feet and neuropathy I have cold feet all the time have socks on still cold .I,ll remember to tell Dr about this never thought of it before .Thanks

I also have Small Fiber Neuropathy and have had severe B12 Deficiency in 2000 of 71 (normal is 200-900 but my Neurologist at University of Michigan told me he likes for it to be over 500). When my B12 was 71, I couldn’t stand without holding onto something. I would sway back and forth. I was so weak I had difficulty pushing a grocery cart. I started out with B12 injections to get my level up to 200, and then had monthly injections for years. When I saw my Neurologist at U of MI in 2011, he wanted me to stop the B12 injections and switch to 1,000 mcg over the counter oral B12. I used Cyclocobalamin B12 tablets at first until I read that the Methylcobalamin B12 tablets are more easily absorbed. I use Nature’s Truth Brand 1,000 mcg Sublingual Tablets - one daily. They are available online. My B12 level is 2,000 now which my Neurologist is okay with - excess B12 is flushed from your body by the kidneys. I have permanent nerve damage in my arms and legs from when my B12 was only 71. I am the one that asked to be tested for B12 deficiency because my Mom had Pernicious Anemia with B12 deficiency in her mid 30’s and had B12 monthly injections for it for life, so I was aware of the symptoms for it. The nerve damage is from probably have very low levels for too
long. In 2,000 a B12 level of 200 was considered a normal level (now they know it needs to be at least 500 to help prevent nerve damage).

Kathy why do you say check Igg levels? Don't know if you are still here.

@rwinney older post but caught my eye since i started a few months ago getting burning cheeks, sometimes flushed sometimes not, right not right lower cheek and down neck is like a burning flame, no diagnosis; yes I feel my internal thermometer is broken - sure I felt cold and heat but as you say even the slightest temp. change. when warm in bedroom, too warm with just a sheet, take it off and any breeze/fan is like ice pellets.... never had this before and i will soon be 79. searching dr.google am now wondering about CARCINOID SYNDROME,,, but if I even mention this thought, especially from google, to nurse practitioner she will think I am overreacting, but i dont have fever, menopause, rosascea, dont drink or smoke, dont eat hot or spicy foods/liquids.... it been 4 months and i stop eating certain things for a few days and think its gone but comes back...burning not just flushing... any pointers please?

@lacy2 Hi Valerie, thank you for your reply. How annoying when we have odd symptoms that we just can't figure out. Sorry you're experiencing temperature sensitivities and burning. It's no fun at all!

Yes, Dr. Google is dangerous. Do you have an appointment yet with your PCP? That's the best place to start and then possibly a neurologist. Do you have a neurologist? I would get in to see someone as soon as you are able.

I'm not a medical professional, but in my opinion, you may be experiencing central sensitization syndrome (CSS) which may indicate some form of neuropathy. Also, have you begun any new medications that perhaps are causing side effects? Do you take pain medications?

Regarding pointers, I think the best thing you can do is to roll with it by finding distractions to take your mind off of what you're feeling and to try and not let it dictate. Keeping calm and deep breathing through flares may help calm your central and peripheral sensory nervous systems down. Work towards figuring out why it's happening and how it can be treated. Do you have other medical conditions that may be contributing?

@rwinney and everyone yes I got p.n. in hands and feet 2016 after taking a quinolone medication NORFLOX, about ten days after finishing this antibiotic for a simple uti; also have a laundry list of non life threatening lillnesses; narrow angle glaucoma; ocular migraines; hypothyroid - had goitre and right side removed; and cancer cervix 1985 so have not has as much as some people but more than others.... and a sprinkling of anxiety and depression. Tonight the right side of face, neck, top of shoulder and r. top of chest burning like there's no tomorrow .... slightly flushed. The nurse didnt know whether to send me to dermatologist or neurologist and I said dermatologist as local, but have to wait til JAN. and its been like this almost 4 months... I should have said neurologist as have seen him out of town once and two zoom meetings over the years. It is surprising how much this hurts, the burning and lasts for hours... I did google Erythromelalgia and also Carcinoid Syndrome but really have no idea...tomorrow annual bloodwork at Clinic and I may ask if any nurse free but I doubt it. also they don't know what it is anyway. I MAY go to emerge if only to be able to see a doctor who may know what this is.... hate going when its not really an emergency but where I live if I go and its not an emergency they just leave us til the end, so can take a cushion, sandwich and book...will decide tomorrow. Also have a rash for last 3 months you can barely see but I can feel, over top of chest, side of neck and behind ears.... I know you cannot diagnoze on this site but sure would like to know if anyone else has this burning face and area! Thanks for the advice. No, not on pain meds as nurse doesnt now what it is.... etc. 🌹🌹🌹

@lacy2 Hello there. That burning must be driving you nuts! How about contacting your neurologist, like you mentioned? Perhaps they can see you sooner than dermatology in January.

I would like to introduce you to my fellow mentor, Chris @artscaping. She is well versed in neuropathy and some skin conditions. I'm hoping she may weigh in with thoughts or suggestions for you as you wait to see doctors.

Did you end up going to the emergent care? It's not a bad idea if you are hoping to get started with some answers. Maybe I missed this, but are you not on nerve medication for your neuropathy?

Homeostasis is controlled by the autonomic nervous system, so any changes, such as temperature change, especially if sudden, often trigger my symptoms because the ANS is not functioning properly to normalize the body from external factors. I always try to dress in layers and keep a cool towel with me to regulate my temperature manually. Hope that may be useful for you too.