← Return to Temperature intolerance and sensitivity - Autonomic Neuropathy?

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@jimhd

@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

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Replies to "@lioness @rwinney @adamek3638 I've spent long days in the heat all of my life, and never..."

@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

@jimhd Hi Jim. You have had a time of it, and my heart goes out. I read everything you wrote, and I am with you. Unfortunately, i feel so sick from neuropathy, that i am not even up to writing. Pain, despair.....you know the drill. My thoughts are with you, Jim. Lori Renee