Temperature intolerance and sensitivity - Autonomic Neuropathy?

Hi @jimhd as a result of a ruptured AVM I also have neuropathy. I get overheated frequently and believe it is from my damaged nerves. They cannot sense body temperature as well. I often do tasks and take breaks in between. I do not stay outdoors longer than 15 minutes at a time when it gets hot. I live in Florida so I spend more time outdoors in the winters. The cooler temperatures are easier on me but I enjoy Florida’s climate all year long. I hope this helps. Unlike you, I do not have a progression and therefore do not take any medications because for my condition I refuse. I rather not deal with any additional health issues from potential side effects. The medications simply do not offer a cure. I find many of the medical staff has no answers so I rely on myself to research and learn by trial and error. Who would know my body better than me?

Depends if you talk about underarms sweat on skin sweat. Skin sweat is related to sweat glands in the skin and small fibers neuropathy

Thats true. Doctors know drugs not our bodies and get offended when we say how we feel

@stefspad Without knowing I was deficient, I was slowly increasing in exhaustion, heat sensitivity, heavy breathing and heart palpitations. I would get out of breath walking up stairs and have to stop midway to catch my breath while my heart was racing. Any simple activity such as basic yard work, making beds, making lunch was exhausting me to the point where I'd essentially collapse on the floor or couch as if I'd run a marathon. Bending over to pull weeds in the heat made me red faced and I'd get intense pressure in my head and migraines increased.

Once deficiency was discovered via methylmelonic blood testing (while going through SFN workup), I began B12 injections every 2 weeks then was rechecked every 60-90 days until my numbers were back to normal. After 6 months or so I stopped injections and switched to oral B12 supplements. My B12 got down to 219. Normal range falls between 200-900. Each lab can vary on numbers and 219 was enough to do damage. My Neurologist claimed this to be my underlying cause of Small Fiber Neuropathy.

I caution anyone to please be aware of signs in your body, listen and report to your Dr. immediately. Also, in my opinion B12 should be monitored regularly in everyone regardless of not having symptoms as it can permanently destroy nerves and leave you disabled.

@avmcbellar More power to you for not using medications! Very admirable. I cant imagine how immobilized I'd be without pain relief from medication. I hope to one day find others ways that can handle and treat my pain. #MayoClinic
Keep up the good work!

@rwinney thank you, although it can be difficult at times I prefer no more worries since the doctors are not sure. Why should I take the potential risk? All medications get broken down either in the kidneys or liver. With any medical benefit there may also be a side effect risk that can cause permanent damage. Some side effects may be irreversible. It is always a good Idea to check with a medical doctor and get his or her opinion but ultimately it is the patient’s decision whether or not to take a drug. I am lucky my doctors support my decisions. Besides, I am the one that lives with a condition not them. Good to know about the B12 levels. Not enough B12 due to the lack of ability to absorb through digestion is called pernicious anemia. I am glad you found help with your dilemma. Do you have issues with overheating anymore?

I'm happy you are at peace with your decision and your Drs support you. I dont have the same kind of B12 defiiciency problems as I described earlier but yes I still do have to be careful of overheating, migraines, etc... my body is not what it used to be. I never found a clear reason for B12 deficiency...I've researched pernicious anemia and had some different tests done, all except an extensive liver test. No findings. Could have been improper diet. When I told my neurologist that I'd like to know the cause of my deficiency, he said that not many people care to figure out out. He referred me to a specialist and I felt like it was a waste of time after a few tests in. I also have chronic copper poisoning to which Wilson's disease was ruled out and that's where that ended. Getting off meds is the right thing to do. Time will tell for me. Take care and thanks for the chat.

@rwinney You can also just google Drugs .com they are a good resource for meds. They tell you about side effects and interactions with other meds. Prednisone is a steriod and all steriod's are hard on the kidneys and liver more kidneys. Ask your pharmacy about meds they are a great resource also as they have as much training as Dr.s

@lioness @rwinney @adamek3638

I've spent long days in the heat all of my life, and never experienced being dizzy - not really dizzy, but being drained of energy and had to sit or lie down after less than an hour of doing yard work. This afternoon I planted 3 pine trees in ground that is really gravelly, so it takes a pick to do any digging. I had dug 2 of the holes and soaked them, so I only had to finish the 3rd one today. Then mix some good soil and well aged manure and put the small trees in. Of course, sharing our yard with deer and other hungry varmints, I put t-stakes and fencing around each one. None of that is normally strenuous but I had to lie down for 45 minutes before moving on with the next job. Yesterday I had to stop and rest multiple times while I was mowing the back yard, and after mowing only half of the yard I was close to passing out, so I had a 2 hour nap.

I had hoped to finish the mowing and work on the brakes on one of my cars, and I really need to get the asparagus and strawberries in the ground. But all of a sudden it got dark, the temperature dropped 30 degrees and the wind and rain hit. I had to run around to get my yard tools and supplies into the barn. I just made it before the rain started pouring down. So much for working on the car. It's not in its usual spot in the carport, protected from the elements. While I was dashing around, getting everything under cover, the power went off. The estimate for getting it back is 2 or 3 hours.

Neuropathy pain in my feet and ankles has been getting worse the past few weeks. One night I woke up with my feet feeling white hot from being in a furnace. They looked sunburned and hurt at pain level 10. I took my 3rd morphine, which I try to skip if I can, and another 50mg of Imipramine, and after a few hours I was able to go back to bed. My spinal cord stimulator isn't controlling the pain anymore. Every night after taking the medications, when I close the medicine cabinet without taking a bottle or two of pills, I feel a sense of accomplishment. Another day without OD-ing. That's a big deal for me, to make it safely to the end of a day. Believe me when I say that it's a big deal, on these days of awful pain.

I know that I'm not alone. There are many people who have worse neuropathic pain than I do. The words "chronic pain" don't begin to describe pain that never lets up, pain that only gets stronger. I have a great deal of admiration for people who are able to push through the pain and keep going. For many, the pain is intractable - doctor talk for "no medication helps". It's incredibly frustrating and discouraging to try one medication after another, only to learn that it won't touch the pain, and at some point you find that you've worked your way through the list, and the doctors have nothing else to offer.

Add to the searching a pre-existing condition such as depression, anxiety or PTSD, and the struggle can become deadly, whether by accidental overdose or suicide. What we would normally call irrational, under the weight of multiple illnesses it appears to be rational. We can lose our sense of perspective. My therapists have told me that I'm the best at wearing masks all of the clients they've seen in their many years of practice. I don't think they meant that to be a compliment.

I'm blessed to have a team of great doctors who are genuinely concerned about my treatment. I know that there are jerks out there, but I've managed to escape them.

@avmcbellar I understand the need for taking frequent breaks when it's hot, and I know too well the collapsing to the floor, @rwinney , or a chair or the bed. My B12 level has always been good. Because of a couple of my meds I have blood draws every month, to keep an eye on, among other things, my liver and kidneys. I've missed a couple during this covid19, and I need to get back on schedule.

Florida is not on my list of places I want to live, though one of my brothers lives in the southwest area. I wonder how many snowbirds are being impacted by covid19. Several weeks ago I read that some northern states would prefer that the snowbirds stay where they are in Florida and Arizona.

Still no electricity after more than 3 hours. At least the rain stopped and the wind died down. As far as the list of jobs needing to be done, they'll still be there tomorrow.

Jim

@jimhd Jim, you are a work horse and I admire, respect and commend you. It sounds like you stop for nothing and push through until your body absolutely does not allow. You accomplish way more than my body could ever imagine but, I understand there are repercussions and fear of not being able to keep pushing in the future. It is not easy to accept change and letting go of things that bring happiness to us overachievers who can be self destructive die hards.

I've discovered there are 2 ways of looking at this (at least in my mind anyway):

1. medications allow masking of pain and enable us to prevail and live some of the life we dream of and were used to prior to our disabilities

2. we are causing more harm to our bodies by using such medications which allow a false pretense therefore not learning pacing and how to adjust and lower our expectations from our disabilities

I'm an over thinker and weigh both scenarios quite often. Kathy @avmcbellar, in her previous posts, speaks of not taking medications by choice and dealing with what life has dealt her. That is incredible! Now, to me that says...either she is one resilient lady who has self discipline and can willfully and graciously accept less in life because of her pain... or, her pain is somewhat controllable and has not escalated to the point of desperation which has disrupted her life and permitted her of life's pleasures and/or accomplishments.

Please note, I'm not saying these are truths for Kathy...just my opinion and observations on how we as people handle pain situations very differently and how each of our situations are quite unique.

Jim, you sound alot like me in not wanting to accept defeat at any cost. I often wonder if I'm putting drugs in my body because I'm too impatient to settle and pace myself, and learn a new existence which is not my typical style. Truth be told I've had to learn a new existence regardless of drugs. On the other hand...I get a quick fix by using medications and still am only able to do the best I can with what I've got but, am I enabling further pain, future harm to my organs and long term dysfunctions? Probably.

Not all of us are privileged in the fact that medications are a "choice". I realize many are kept alive by medications and have no choice but, to take them. It confuses me to no end and I wish none of us were in these situations to even have these discussions.

Jim, I'm so glad you talked it out tonight. You had quite a couple of days. I hope you rest well and get control of what is new to the table for you. As always, I wish you the best with peace and comfort.
Rachel