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Recently Diagnosed with Small Fiber Neuropathy

Neuropathy | Last Active: Jun 13, 2021 | Replies (24)

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@artscaping

Good afternoon @resage. Welcome to Connect and particularly Connect for neuropathy. I notice that you did not mention a skin test biopsy. That, so far, is required to confirm small fiber neuropathy (SFN). It is a simple test, not painful, and very quick. The sample is then sent to a special lab that measures the percentage of nerve cells that you have in the sample. Mine was .09%.....hardly enough to do even a mediocre job of calming down the symptoms.

I notice that you are what is called "idiopathic" meaning the cause is unknown. Gabapentin was my first medication. I still use 600 mg a day to reduce the numbness and tingling in my hands, wrists, and arms. The cold, icy legs and feet are just part of my daily visit from Mr. Neuropathy. As of this moment, I have only one other medication and that is duloxetine. It prevents me from letting anxiety take away my attempts to tolerate and control the painful and annoying symptoms.

You asked about other treatments. My #1 choice is MFR.....myofascial relief therapy. Because fascia is the material that covers all connective material in our bodies....when it is restricted and all stuck together....you have significant difficulties getting everything all straightened out. Pay a visit to http://www.myfascialrelease.com to learn more. I now have 2 sessions a week.

Exercise is still an essential part of feeling the best we can. I do Yoga every morning....using a routine designed for me and my SFN. I also practice mindfulness meditation every day, belong to a sangha, and attend two retreats a year to hone my skills. All I can say about these helpful activities is that they make a huge difference in my life and allow me to just be more human.

As for pain meds...I do not use them. In fact, I refuse to use them. I don't need the digestive issues and the discomfort that they can cause. My pain is totally controlled by medical cannabis. I use tinctures and topicals only. I have different types and different dosages for the time of day and activity level. I sleep well and if it weren't for the darn icy legs, would wake up ready to mow the lawn.

At this point, I would like to introduce one of my partner mentors in this group, @johnbishop. He, like you, has no pain with his neuropathy and just lots of information and experience to share.

May you be safe, protected, and free of pain and discomfort.
Chris

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Replies to "Good afternoon @resage. Welcome to Connect and particularly Connect for neuropathy. I notice that you did..."

Hi @artscaping . Thanks so much for your response and insights. I have not had the skin biopsy yet but my Neurologist wants me to have it- just didn't yet because I'm tired of tests with no conclusions that are helpful. I will consider all of the other interventions you mention. For now, I would just love to be able to sleep as the icy cold feet and legs prevent me from falling asleep. I look forward to hearing from the other mentor you mentioned. Thanks!

Chris, you are such a dear, remarkable person. thank you for this message. I've been working on my mental/emotional attitudes, as I've not felt well the last several weeks and getting tired of the feelings of loss, etc. So, you, as you normally do, sent a message to someone and I benefited. I'm adding more music and art tonight, and will be focusing beginning tomorrow on increasing movement, not full exercise until after I have a few more tests re heart, etc., but movement and mindfulness. You are an inspiration.

Thank you. I'm getting my tincture now to help, putting on some music and remembering what a blessing this day is for me and all.
Blessings to you, be well and per you, 'free of pain and discomfort'!
elizabeth