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Small Fiber Neuropathy: Book Recommendation

Neuropathy | Last Active: Nov 25 6:00pm | Replies (67)

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@bailey11

Hello ,
Thanks for all the discussions.
I agree, we can’t find better treatments or a cure soon enough! Diagnosed with small fiber neuropathy with autonomic dysfunction eight years ago. I’ve been seeing Neurologists from Stanford to Glenviewillinois.. i’ve seen multiple specialists to rule out diabetes, immune disorders, polythesemia Vera, and bone cancer. I have numbness in tingling in my feet, legs, arms and hands. I also experience issues lightheadedness occasional palpitations including PVCs snd fatigue. I also suffer from mild sleep apnea. I don’t hear about a lot of people talking about sleep apnea with small fiber neuropathy. I manage it with a BiPAP machine . I am taking atenolol and lorazepam as needed. My doctor just prescribed me Cymbalta. I hope they continue to research better treatments and ultimately a cure. This has Significantly impacted my professional and social life.
Bless you all!

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Replies to "Hello , Thanks for all the discussions. I agree, we can’t find better treatments or a..."

Welcome @bailey11......it is wonderful to make your acquaintance this evening. How did you stay away from us for eight years? We need you on Connect. This is a place where we believe in sharing our experiences in hopes that we will help others. And in turn, we are looking for ideas and stories from others that just might be what we have been anxious to find.

I hope that you are able to connect with @johnbishop pretty soon. He also uses a sleep apnea machine and has SFPN (small fiber peripheral neuropathy). The difference is that he has no neuropathic pain or neuropathic itch......just numbness. However, he is an amazing researcher, and we all look to John to keep even us informed about what is going on in the neuropathy world.

Do you remember why your doctor prescribed Cymbalta? It is the only anti-anxiety medication that works quite well for me and keeps me from getting lost in the circle of anxiety that creates pain which creates more anxiety, etc., etc., etc.

My entry into the world of SFN began after a lifetime of trauma to my body and surgeries that made an effort to replace bones, muscle, and connective tissue similar to the way they should be and used to be. Today, I took an evening walk of a couple of miles along the Mississippi River. It was beautiful and I actually ended up relaxing in a swing as the sun went down. Tomorrow I have a wedding to attend.......and it is for my MFR (myofascial release therapy) therapist. She has been with me now for at least eight years and I show up twice a week to make sure I can walk well and drive the car.

What is of greatest concern to you at this time? What are you hoping to find on Connect?

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

Hi @bailey11, I would like to add my welcome to Connect along with Chris @artscaping and others. I'm happy you found us also. Connect is a great place to learn from the experience other members have shared. Probably one of the most important things you can do for yourself is to learn as much as you can about your condition and what treatments are available that may provide relief for your symptoms.

The Foundation for Peripheral Neuropathy has a lot of great patient information and a good place to start might be to look through their list of past webinars to see if there is one of specific interest to you. Here's the page on their site that lists the webinars -- https://www.foundationforpn.org/past-webinars/