Recently diagnosed with Small Fiber Neuropathy - so many questions

Posted by Maveric09 @maveric09, Feb 4, 2022

Hello, I am a 44-year male just diagnosed with Small Fiber Neuropathy (SFN). In addition to the numbness and tingling in my feet and hands, I started experiencing facial flushing, chest pain, orthostatic hypotension, and digestive issues last year. It took me nearly a year and more tests than I can count to finally arrive at a diagnosis.

I have so many questions, but the neurologist that diagnosed me is so hard to get a hold of. In fact, I haven't even met with her yet – she just called me to tell me the diagnosis and prescribed me Lyrica. To be fair, she's an expert on this condition, but there's one of her and so many of us.

Admittedly, I am scared. I hope I may share some of my questions with this group. Thank you in advance for your support. My questions are:

1.) Is there an association or definitive resource (like the American Heart Association) I can research?

2.) What are some of the health care facilities that do research on this condition? Would it help to come to the Mayo Clinic to speak with experts on this? It feels no healthcare practitioner knows what I am talking about when I mention SFN. I can't tell you how many doctors told me I had anxiety and suggested SSRIs.

3.) Will this get worse? Is it fatal? What else can I do to treat/manage symptoms? Are there alternative forms of treatment? The side effects of Lyrica seem pretty extensive, and the 'significant weight gain' seems like it would be something I would want to avoid given all the things I am experiencing.

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

Good evening @maveric09 and an enthusiastic welcome to Connect. By introduction, i also have SFN and chronic myofascial pain syndrome. Mine was determined by a skin biopsy which indicated that it is severe at this point. Is that what determined your diagnosis.?

Let me see if I can answer your first two questions…..SFN is progressive as it takes way too long to regenerate replacement nerve cells. It is not fatal, however, many folks will encounter some form of it during their lifetime. And at this moment, there is no cure. There are some studies being done on possible regenerative medications.

Do you know how your SFN came about? Was it from chemotherapy or diabetes? Did your neurologist have a name for the type you have? Mine is from multiple traumas including accidental injuries and frequent surgeries. If the source is unidentifiable, it is labeled as idiopathic.

We can help you with the research information. I am going to introduce you to @johnbishop. He is our research expert and is quite familiar with the work done by the two professional organizations. John is also a neuropathy patient at Mayo Clinic in Rochester and knows what the relationship has been like. The only thing John doesn't have is pain……he only has numbness and what I call the tingle tangles.

Before I send you off to John, I would like to mention that there are options for treating SFN. For example, I started with Gabapentin for pain and numbness and Nortriptyline for depression and anxiety. I was quickly introduced to medical cannabis and now use only tinctures and topicals…..with CBD and THC, in appropriate dosages and formats. I have also found that mindfulness and meditation practice make a huge difference. Exercise is always very important including yoga and walking. At some point, you may want to try MFR, myofascial release therapy. I have two sessions a week and the goal is to keep my quality of life positive. As the pain and irritation progress, I will probably have to move to three sessions a week.

So….that's a start. John?????? please join us.

May you be safe, protected and free from inner and outer harm.
Chris

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@artscaping

Good evening @maveric09 and an enthusiastic welcome to Connect. By introduction, i also have SFN and chronic myofascial pain syndrome. Mine was determined by a skin biopsy which indicated that it is severe at this point. Is that what determined your diagnosis.?

Let me see if I can answer your first two questions…..SFN is progressive as it takes way too long to regenerate replacement nerve cells. It is not fatal, however, many folks will encounter some form of it during their lifetime. And at this moment, there is no cure. There are some studies being done on possible regenerative medications.

Do you know how your SFN came about? Was it from chemotherapy or diabetes? Did your neurologist have a name for the type you have? Mine is from multiple traumas including accidental injuries and frequent surgeries. If the source is unidentifiable, it is labeled as idiopathic.

We can help you with the research information. I am going to introduce you to @johnbishop. He is our research expert and is quite familiar with the work done by the two professional organizations. John is also a neuropathy patient at Mayo Clinic in Rochester and knows what the relationship has been like. The only thing John doesn't have is pain……he only has numbness and what I call the tingle tangles.

Before I send you off to John, I would like to mention that there are options for treating SFN. For example, I started with Gabapentin for pain and numbness and Nortriptyline for depression and anxiety. I was quickly introduced to medical cannabis and now use only tinctures and topicals…..with CBD and THC, in appropriate dosages and formats. I have also found that mindfulness and meditation practice make a huge difference. Exercise is always very important including yoga and walking. At some point, you may want to try MFR, myofascial release therapy. I have two sessions a week and the goal is to keep my quality of life positive. As the pain and irritation progress, I will probably have to move to three sessions a week.

So….that's a start. John?????? please join us.

May you be safe, protected and free from inner and outer harm.
Chris

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three months ago I went to bed with normal feel. next morning I had cold toes. since that time they feeling has extended to the middle of my foot.

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Hello @maveric09 and @442, I would like to add my welcme to Connect along with Chris @artscaping and others. @maveric09 you have asked some really good questions and ones that a lot of us asked when we were starting our neuropathy journey. One of the best suggestions I can provide is that you learn as much as you can about your condition and what treatment options are available. The more you know, the better questions you can ask your doctors and hopefully it will result in a treatment plan that helps you. I think any teaching hospital or major health facility like Mayo Clinic can provide a diagnosis for you but treatment may not be what you expect which is why learning as much as you can about your condition is really important.

For learning more about neuropathy here are my two best sites with reliable information:
— Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You might also find this discussion helpful when you are searching for information — How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/

Many of us have shared the story of our neuropathy journey in the following discussion:
— Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

One thing I try to focus on which helps most if not all health related problems is maintaining a healthy lifestyle. The Foudation for Peripheral Neuropathy has some suggestions you might find helpful if you are not already doing them — https://www.foundationforpn.org/living-well/lifestyle/

@442 and @maveric09, Do you mind sharing what is the most difficult symptom or concern you have with neuropathy?

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Maveric09 there is help with small fiber neuropathy… I too thought the world was closing in on me with no an real answers from Doctors until… I was on a zoom call with a group that meets monthly and had a presentation from a Dr. Jacoby from Scottsdale AZ. he and several other doctors have a procedure called nerve decompression. my spouse and I went down three weeks ago to have one leg and foot done ( he will do one at a time ) I have early results that are amazing. Compared with the leg and foot that is not done I can tell the deference already. No more shooting lightning sharp pain going up from the ankle, Generally I think this is the game changer. Going down to have the other set done in a month or so. Look him up ion the internet in Scottsdale. He is willing to take people that qualify. note I have the beast also going up my back and into my arms and hands. hope this all helps out some from the lower surgery.

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would you provide contact information for Dr Jacoby in Scottsdale AZ Thanks

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@442

would you provide contact information for Dr Jacoby in Scottsdale AZ Thanks

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Dr. Richard Jacoby, DPM – Scottsdale, Arizona
https://www.healthgrades.com/physician/dr-richard-jacoby-xymc7

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@dantic123

Maveric09 there is help with small fiber neuropathy… I too thought the world was closing in on me with no an real answers from Doctors until… I was on a zoom call with a group that meets monthly and had a presentation from a Dr. Jacoby from Scottsdale AZ. he and several other doctors have a procedure called nerve decompression. my spouse and I went down three weeks ago to have one leg and foot done ( he will do one at a time ) I have early results that are amazing. Compared with the leg and foot that is not done I can tell the deference already. No more shooting lightning sharp pain going up from the ankle, Generally I think this is the game changer. Going down to have the other set done in a month or so. Look him up ion the internet in Scottsdale. He is willing to take people that qualify. note I have the beast also going up my back and into my arms and hands. hope this all helps out some from the lower surgery.

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Tell more about the monthly zoom call. How do we participate? Thanks.

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Michael Wright *** is the administrator of the group

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@442

three months ago I went to bed with normal feel. next morning I had cold toes. since that time they feeling has extended to the middle of my foot.

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Good afternoon @442. Thanks for responding and welcome to Connect. Unfortunately, cold feet is one of my real challenges. I should say freezing feet because sometimes mine are freezing cold with what I call liquid ice. They don’t respond to movement because they are also numb in places……especially on the bottoms. I have them treated twice a week so that I can continue driving. Let’s put out a request from other neuropathy members to see what works for them.
Have you been diagnosed with a form of neuropathy?

Please let @422 and me @artscaping know about any tips you have for keeping your feet warm.

May you have contentment and ease,
Chris

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Im in the same boat except I also have pain in my feet when I walk. Is that something you experience?

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