1. < Neuropathy
Mentor

Small Fiber Neuropathy: Book Recommendation

Posted by Rachel, Volunteer Mentor @rwinney, Aug 18, 2019

Sorry for not thinking of this sooner to share with all of you. My neurologist Dr. Charles Argoff from Albany Medical College, NY collaborated on a book with other Drs (some from Mayo Clinic) called
SMALL FIBERS, BIG PROBLEMS
A comprehensive patient guide to small fiber neuropathy. He mentioned it to me when I was first diagnosed with SFN this past February. It was written in 2017 due to the growing numbers of patients suffering from the disease.

After my fast and furious internet research had become confusing, I ordered the book from Amazon. It is such a simply stated tool in understanding SFN. I referred to it quite often in the early stages and it helped justify alot of what I was feeling. It helped me and I hope it can help you too!

Interested in more discussions like this? Go to the Neuropathy Support Group.

trishh | @trishh | Sep 28, 2021
In reply to @artscaping "Good afternoon @trishh, thanks for responding. It sounds like you have scheduled opportunities to get all..." + (show)
@artscaping

Good afternoon @trishh, thanks for responding. It sounds like you have scheduled opportunities to get all of your questions answered. I just must ask.....how can your neurologist be vague? This is pretty critical in my book. Any time you are undergoing surgery, especially when you have SFN, there must be understanding by everyone on your "team".

I will mention that duloxetine which may be your "or something" is one of the medications that I trust to keep my anxiety under control. And that is what happened to me......I didn't have it on the post-surgery schedule and really needed it. The brand name is Cymbalta. I take it in the morning, 90 mg, and that keeps my head on straight for most of the day. Because it works on the anxiety and anxiety causes pain, it gives me a better and more pain free start in the morning.

Will you let me know how the classes go tomorrow. It is so important to share the prep sessions to make sure everyone knows what to look for when it is their turn.

Good luck. I hope you leave relieved and know that your SFN will be managed for you.

Chris

Jump to this post

Hi Chris@artscaping I just wanted to touch base with you tonight. I had a bad fall last night and am so sore which added to my pain.
I see my knee specialist in morning and need to clarify some things.
I hope to feel better in a few days to discuss more.
I am going to see my PCP next week but need to discuss the SFN with my neurologist before.
Hope you are doing well. Will write more when I feel better. 😥
Trish

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 28, 2021
In reply to @greenacres "@artscaping Hi Chris. One other thing and you've might have already told me but do you..." + (show)
@greenacres

@artscaping Hi Chris. One other thing and you've might have already told me but do you know if your SFN is hereditary or autoimmune related? I know you mentioned you've had lots of surgeries and had a fall.

Jump to this post

Hi there @greenacres. My SFN is probably from trauma. Too many falls, too many surgeries. Too much metal propping up my neck, my ankle, my knees, my shoulders.....etc. etc. No one in my family has had to deal with SFN. In addition to the falls from horses and down mountains, I was in rear-end collisions 3 or 4 times and fell pell-mell down marble stairs while on crutches from one of the surgeries. Those episodes did me in, I do believe.

Thanks for caring. I used to call myself "a disaster just waiting to happen."
Chris

REPLY
1 reply
greenacres | @greenacres | Sep 29, 2021
In reply to @artscaping "Hi there @greenacres. My SFN is probably from trauma. Too many falls, too many surgeries. Too..." + (show)
@artscaping

Hi there @greenacres. My SFN is probably from trauma. Too many falls, too many surgeries. Too much metal propping up my neck, my ankle, my knees, my shoulders.....etc. etc. No one in my family has had to deal with SFN. In addition to the falls from horses and down mountains, I was in rear-end collisions 3 or 4 times and fell pell-mell down marble stairs while on crutches from one of the surgeries. Those episodes did me in, I do believe.

Thanks for caring. I used to call myself "a disaster just waiting to happen."
Chris

Jump to this post

Hi Chris @artscaping. It sounds like you've been through a lot. I appreciate your positive and helpful postings. I think my husband's idiopathic PN (possibly SFN) is from overuse and spinal issues.
It's encouraging that you've learned to manage and embrace the changes and chose to be a mentor for others who are suffering.
Thank YOU for caring.
Michelle

REPLY
bailey11 | @bailey11 | Jul 30, 2022

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!

REPLY
2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 30, 2022
In reply to @bailey11 "Hello , Thanks for all the discussions. I agree, we can’t find better treatments or a..." + (show)
@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!

Jump to this post

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

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jul 30, 2022
In reply to @bailey11 "Hello , Thanks for all the discussions. I agree, we can’t find better treatments or a..." + (show)
@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!

Jump to this post

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/

REPLY
shordae | @shordae | Nov 25 6:00pm
In reply to @rwinney "Diabetes does seem to be the leader along with idiopathic neuropathy. My cause is B12 deficiency...." + (show)
@rwinney

Diabetes does seem to be the leader along with idiopathic neuropathy. My cause is B12 deficiency.
More than just pain, burning, numbness and tingling I also experience palpitations, exhaustion, and shortness of breath. I dont hear much about the later symptons and wonder who else experiences them. B12 injections have helped me level out but still not normal. Dr says it too is part of SFN but, I don't recall seeing anyone speak of these symptoms. Also, my pain is throughout my body at an agressive rate with my legs now limiting me to walk and drive. I do appreciate the info shared through the forum about slowing progression down. Thank you.

Jeanie ~ the book I have recently referenced deals with large fiber as well and I hope it along with the links that are being referred to you can help ypu and your daughter.

I wonder if anyone in the forum has experienced small fiber turning into large fiber and what the progression of time was between. Obviously realizing that we all progress differently, I'm interested anyway. There is alot to think about going forward.

Jump to this post

Any chance you figured out what was going on? Did b12 help you

REPLY
View MoreView Less
Please sign in or register to post a reply.