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Recently diagnosed with Small Fiber Neuropathy - so many questions
Neuropathy | Last Active: Mar 8, 2022 | Replies (78)Comment receiving replies
Thanks for your "from the heart" reply. My private statement to myself is that my nerves are dying faster than I am. Remember that with SFN.....there aren't enough active nerves to send the appropriate messages. With the resulting confusion in the brain.......the signals that go back to the area are ones of pain.
I am quite concerned about your statement that you don't have the luxury of thinking positively when you are in severe pain. That is the exact time that you need to implement mindfulness practice. You may benefit from an introduction to @rwinney. She and I have shared several years of mutual support for each other. Rachel, at one time, was close to if not in the place that you appear to be right now. She has evolved to a place of control of her neuropathic pain as well as other conditions she lives with every day.
May you be safe, protected, and free from inner and outer harm.
Chris
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Hello there @julkun -
Do I ever hear you loud and clear! You have your finger on the pulse by understanding that you're mentality and your brain are your biggest foes in fighting chronic symptoms. It seems odd because we know that our brain, via our spinal cord, is where our pain stems, but you, like me, seem to be ready to proactively think outside the box. Congratulations on a big step!
Thank you to my friend @artscaping for tagging me in the conversation. Chris is a great role model and one of my OG Connect inspirations.
Julkun, I was where you are now and had had it with Dr. hopping trying to find a "fix", taking medication after medication, injections, infusions, ablations, nerve blocks, etc... It burned me out and was actually having an adverse affect on me physically and mentally. I lived with creams, ice packs, heat packs, neck and back pillows, all sorts of pain behaviors which I was blind to see at the time because of desperation and little self-awareness. My head was up my you know what.
You mention severe pain periods and losing your ability to think positive. Yup, I get it, but it cant stop you. You are worthy, you are smart, you have value, you have ability. It is very hard to not be caught up in full concentration of pain, but it is not all your life can be. My life was that and I was ruining myself, and it was no joy ride for my family either. I searched for a better way and found it by attending Mayo Clinic's Pain Rehabilitation Program where I learned tools to strengthen my mind and body and refocus on how to manage and live with chronic pain and symptoms and live a better quality of life.
I'm attaching an amazing video by Mayo Clinic's Dr. Sletten that pin points exactly what happens when we continue to let our life box be small and remain in a hamster wheel. Dr. Sletten explains Central Sensitization Syndrome (CSS) which is an umbrella over many diagnoses like small fiber neuropathy and others:
- https://www.youtube.com/watch?v=vJNhdnSK3WQ
Do you mind letting me know your thoughts on the video? What is your first personal goal? How can I help you further?