Temperature intolerance and sensitivity - Autonomic Neuropathy?

@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

@rwinney Hi Rachel, All your temperature sensitivities you describe sound like problems with SFN. Horrible. My sister in law blisters from sun, but never got a diagnosis. She just stays out of the sun. It is crazy how utterly challenging temperature sensitivities can be. I have them mostly in my feet where my problems primarily are. Lately, my feet feel very wet, when they are dry. All crazy nerves, acting up. God give us strength. This is not for sissies. Lori Renee

@rwinney Hi Rachel, All your temperature sensitivities you describe sound like problems with SFN. Horrible. My sister in law blisters from sun, but never got a diagnosis. She just stays out of the sun. It is crazy how utterly challenging temperature sensitivities can be. I have them mostly in my feet where my problems primarily are. Lately, my feet feel very wet, when they are dry. All crazy nerves, acting up. God give us strength. This is not for sissies. Lori Renee

@rwinney thank you for your comments. @jimhd I admire your tenacity and motivation. Each of us have choices to make with how we live our lives and how much we can tolerate. Through our experiences, we do what is best for us. I have always been tough when making my decisions especially when dealing with my health. I firmly believe I have survived my ruptured AVM because of that. While I was in intensive care at the hospital doctors told my family they did not think I was going to make it. My hard work before had paid off when I awoke from my coma. I knew doctors did not know much in general before, but this incident confirmed my beliefs. Since I got no answers I decided to research and learn through trial and error for myself. I saw friends who took medications their doctors recommended. After years of taking some of those medications I saw the negative impact on their health. We also see ads on TV from lawyers who sue companies for illnesses caused by their medications. I am not saying to not take the medications but to simply do your research to see if the benefits outweigh the risks. I am an advocate for my 90 year old mother who lives independently. I taught her to communicate online with me since we do not live closely. Luckily she listens to me and avoids hospital stays. I communicate with all her doctors and tell them what is best for her. I advise her what to eat to control her diabetes and cholesterol without medications. So far her blood lab results are well within range. She only takes prescription medications to control her thyroid and hypertension. As @rwinney mentioned sometimes we may have to endure pain but that is ok for me because I do not want to deal with any health problems down the road. When I was released from the ICU I was given a prescription for a pain killer to ease my headaches. I chose not to get the medication but instead to use ice. It has been a great help. I also questioned the need for a medication given to me while at the hospital to prevent seizures. My doctor agreed with me and weaned me off the drug since I had no seizure activity. I have remained seizure free ever since then(4 years now) and without drugs. If I had never questioned my doctor I would not have gone off the medication. I feel doctors won’t mention medical options unless the patient has medical knowledge. Knowledge is power. I feel each day provides a new challenge on tackling our health issues depending on what we can tolerate. Best wishes to all in finding the right solution.

@lorirenee When you said about your sister in law blistering when in sun ,a light bulb went off for me . I too dont tan in sun I get beet red and blister ,thanks for your post .

@lioness Hi, nice to hear from you! My sister in law would blister immediately afb ter a few hours of sun. I don't know if she ever found out why, but just avoids sun bathing.....take care, Lori Renee