Replies to Hello community. I thought I was just getting old but I kept getting worse and worse….

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Neuropathy | Last Active: 5 days ago | Replies (179)

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@annielucas99

Hello community. I thought I was just getting old but I kept getting worse and worse. My PCP was no help at all in the face of so many symptoms that didn’t seem cohesive and or indicative of any typical ailment. In exasperation I quit him and went to a new doctor and begged him to help me find out what was wrong with me. Long story short I was eventually diagnosed with Sensory Polyneuropathy. I was then fired from my job with the Social Security Administration for taking every bit of my medical and vacation leave while on probation. I was not able to continue seeing any doctors. I have discovered that I can’t live without Gabapentin. The pain is unbearable and I become suicidal. I know next to nothing about my own condition and I have by far more questions than answers. Please help me understand my illness. Anybody. Please. Some of my symptoms…sudden inability to swallow, feet and legs feel like lead and hurt badly especially at night, hands fall asleep and tingle constantly, extremely cold all of the time, NO short term memory, dizzy, can’t seem to think clearly, extreme sensitivity on different parts of my body (burning), NO balance, low low blood pressure, fainting, frequent falls, broken bones. There is more. Somebody. anybody, please help me understand what is happening to me. Annie

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Replies to "Hello community. I thought I was just getting old but I kept getting worse and worse...."

Chris Trout, Volunteer Mentor | @artscaping | Aug 16, 2022

Good evening @annielucas99. Oh, my dear.....it sure appears that things have piled up on you in the most hurtful way. I am pretty bowled over by your treatment at Social Security. However, I have been through months of attempting to process support for a new skin health medication with Social Security and it has been a pretty heavy and lengthy trip. I just got my fourth letter this weekend, repeating the same information.

So let's see if we can tackle your "need to know" inquiries from the top down. Most, if not all, of your symptoms are listed under sensory neuropathy when I google it ...with the exception of short-term memory and balance issues. What you may have is something I have just finished spending the last six months studying myself. For the second time in the last three years, I have just been diagnosed with GAD........generalized anxiety disorder. The symptoms include short-term memory and other SFN (small fiber neuropathy) as well as a faltering memory. And of course, anxiety also creates pain/burning/heavy feet and legs as well as at least some of what I call the tingle tangles which then create more anxiety and then more pain, etc., etc., etc.

By the way.....have you recently been dealing with suicidal ideation? Did you know that the new number for help is only three numbers "988"? Please call for assistance at any time.

I also tried just googling Sensory Neuropathy and that is where I got this confirming symptom information. For additional information, I do recommend you spend some time with the following sites:
-- https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061
-- https://www.foundationforpn.org/
-- https://neuropathycommons.org/
Knowledge is power and the best way to understand what is happening to you is to learn as much as you can about what is going on in your body.

And for the next step, you will begin to chat with other neuropathy members on Connect. We are firm believers in sharing......sharing what we experience, what we know, what we need to know, etc. with each other. That is how I learned about SFN (small fiber neuropathy) a condition I have been dealing with for 9 years.

In terms of supportive medication, Gabapentin is a good start. I take it every day at bedtime to keep my hands, wrists, and arms from interrupting my sleep. I can't tolerate it during the day but it certainly helps me get some rest at night. The other medication that helps me is Duloxetine.....also called Cymbalta. It is the best anxiety reducer I have tried and I have increased the dosage as needed over the years so that I get the best chance possible to have a pleasant and productive day.

So...let's call this the beginning Annie. What is your most critical issue right now?

May you be free of suffering and the causes of suffering.
Chris

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