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Small Fiber Neuropathy

Neuropathy | Last Active: Dec 9 3:57pm | Replies (95)
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@rwinney

Hello @nrivers, it's nice to meet you! Thank you, Chris @artscaping for the introduction.

Chris and I met in 2020, when I first came to Connect trying to make sense of odd symptoms such as numbness, shooting pains and yes, being cold yet burning at the same time. Mind boggling, isn't it?!?

I was diagnosed with SFN followed by learning of the umbrella explanation called Central Sensitization Syndrome (CSS) which covered other chronic conditions like migraine, back pain, TMJ, sensory hypersensitivity, etc. It's difficult coming to terms with chronic conditions. Chris once told me that she put her feet on the floor each morning and "welcomed her pain". HAH, years ago I resisted that sentiment but now understand that when floating on a rubber raft in the rapids, it's best to float with the current instead of against it.

Your doctor said it best - "hard drive is fine; but the software just isn't very good." My pain rehab center (PRC) doctor at Mayo referenced this phrase as well. I graduated 3 years ago and also continue to "work the program", like you, by means of applying stress-management and coping tools. Strategies and scheduling are a must for me to get from one day to the next with as much grace as possible. How do you manage finding your sweet spot between physical activity and rest, respecting your symptoms, but not letting them dictate life?

Hmm...I'm wondering which PRC you attended. Do you keep in touch with any of your PRC classmates or belong to the private Facebook group (Florida) called "Living the C" for continued support?

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Replies to "Hello @nrivers, it's nice to meet you! Thank you, Chris @artscaping for the introduction. Chris and..."
nrivers | @nrivers | Apr 22 4:39pm

Hi Rachel,

Thanks so much for your kind note!

I started with these symptoms very suddenly...seemed to dovetail with a UTI after a medical test and the prescription of Cipro to combat it. That was back in the fall of 2019.

I went to Mayo, Rochester for testing and diagnosis. I've been returning each year for repeat testing, but nothing much changes.

I believe I went to PRC in October of 2020. Like you, it was very helpful for me: I learned so much. It has been a challenge to apply what I've learned, though: I tend to fall back to previous patterns of behavior. The dreaded catastrophizing, searching for the silver bullet that will return me to better health, etc.

Nevertheless, I do catch myself and have all sorts of tools to work with. I use Headspace.com for meditation daily, have a wonderful spouse and lots of friends, and work part-time now in my retirement. I am a very active person physically...I love to hike, ski, bike, trout fish, garden, petc...which is good and yet so easy for me to overdo...paying for it for days afterwards.

I also had an aortic valve replacement surgery (not the tavr type!) in 2022, which has complicated things a bit.
I continue to go to cardiac rehab twice a week...most of the same exercises we learned at PRC.

I had a PRC day long follow up refresher on my calendar, but then the heart problem emerged, so I haven't actually done it. Have you? Did you find it helpful?

For about a year/year and a half, I was in regular contact with 3 of
my classmates from
PRC, but that eventually faded. All of us really became close during those 3 weeks, right? Amazing--different ages, genders, conditions--but everyone really supported everyone else.

I didn't have anyone in the group with my particular symptoms, so it is great to make the connection with you. I know I, too, have CSS. All the hallmarks of personality--perfectionism, childhood trauma, hypervigilance, etc.

But a day at a time!

Thanks again for writing...and mentoring. All the best to you.

My name is Dave, incidentally.

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