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Small Fiber Neuropathy: Book Recommendation
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!
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Normally a skin punch biopsy -- https://neuropathycommons.org/get-tested/skin-biopsy
It would seem that many neurologists don't test for SFN. Can I ask what is the advantage of knowing you have SFN? Is the treatment any different from Idiopathic peripheral neuropathy?
Good morning @greenacres. I wondered the same thing. And then I moved to MN and had all new providers. The first thing I was asked was....do you have a diagnosis? Not only that but where was the biopsy taken and what were the results. That information can tell how depleted your nerve cells are in a defined sample. Mine was .09 which indicated the severity of my SFN and from that what can be predicted to present an issue that needed attention.
When the numbness and pain began to increase throughout my body.....abdomen, skull, thighs, etc. there was evidence to back it up. I understand the biopsy can be from different areas.
Since I am from the "knowledge is power" group.....it meant a lot. Faster responses from providers and more understanding by the patient meant better and more targeted MFR (myofascial release therapy) as well as more research materials.
Hope this helps.......how is your husband doing? And you?
May you be safe and protected from inner and outer harm.
Chris
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3 ReactionsChris@artscaping
Hello...i have 4 hour classes tomorrow to go over everything.
I meet with Nurse first half and discuss PM post Op and recovery.
Then a PT for what to expect.
My neurologist is vague on. My SFN and feels my problem is motor loss in feet with back OA disease.
She wanted me to take dulexicam or something. I haven't yet. Do you have suggestions?
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
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1 ReactionChris@artscaping thank you for your quick response. I had Lyme disease and this started decline of my nervous, immune, and a few other systems.
I am in so much pain from SFN tonight...have ice and elevate them. I had to switch neurologist when insurance changed and we are getting to know one another.
I just bought the book recommended. Called Small Frbers, Big Problems.
I haven't got to read much yet.
I will definitely post about my classes and what I learned.
Have a good night
Trish
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3 ReactionsGood morning @artscaping. Thank you for your thoughtful response. I'm glad that the biopsy helped you understand what was causing your numbness and pain. It also sounds that knowing that you have SFN has helped you find ways to manage your condition better.
I've looked into MFR therapy but there appears to be only one provider in the area that is trained in the Barnes technique and that practitioner is still an hour away. We do have a Hypervolt (percussive therapy) which offers some temporary relief.
We are both doing well. His PN started the end of 2017 and joining this group has been a huge advancement in understanding his condition better. I'm now in the acceptance phase, as is he but always on the lookout for ways to manage the pain. Recently added the F&M (neuropathy topical) drops to the mixture and that does seem to bring temporary relief by decreasing the level of pain a couple of notches. He also started taking the R-ALA and is having to work his way up slowly as @johnbishop suggested since it definitely causes stomach distress.
May you be safe and protected, healthy and strong,
Michelle
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2 ReactionsMay I ask a 4 hour class for what? What is F & M oil? My neurologist never even mentioned SFN. My podiatrist suggested it in the first 10 minutes of meeting her. She performed the punch biopsy for the lab.
Frankincense & Myrrh.
@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.