1. < Neuropathy

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.

Mentor
John, Volunteer Mentor | @johnbishop | Feb 6, 2022
In reply to @dantic123 "Michael Wright *** is the administrator of the group" + (show)
@dantic123

Michael Wright *** is the administrator of the group

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Hi @dantic123, You will notice we removed the email address from your reply to @retired123 to protect the privacy of the administrator of the group. You can share personal contact information using the Send a Private Message funtion of Connect. To send a private message to another member:
-- Click the member's username. This will bring you to the member’s profile page.
-- Click Send Private Message.
-- Write a subject and your message.

You can add other members to the private message by typing their usernames in Add Recipients (Do not include @).
Click Send Message.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 6, 2022
In reply to @davelobb12 "Im in the same boat except I also have pain in my feet when I walk...." + (show)
@davelobb12

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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@davelobb12, Thank you for responding to both @422 and me. That is an important question. It is a different kind of pain.....whatever the numbness and tingling create. When you add the cold, then it is quite irritating. The other thing you must do is be very careful that you do not fall. Sometimes I have gone to the grocery store and just walked up and down the aisles, hoping to get my feet to calm down.

There are lidocaine patches you can try or you can get a personal ointment created at a compounding pharmacy. These can work well for a few hours depending on the pain elements your clinician
specifies. Have you tried Voltaren? That topical medication has been around for many, many years. Another option is a cannabis balm. You can get them for chronic pain or acute pain.

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

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1 reply
sueholdenf | @sueholdenf | Feb 7, 2022
In reply to @artscaping "Good afternoon @442. Thanks for responding and welcome to Connect. Unfortunately, cold feet is one of..." + (show)
@artscaping

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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Hi. All, Has anyone been advised to stop driving by their

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1 reply
sueholdenf | @sueholdenf | Feb 7, 2022
In reply to @sueholdenf "Hi. All, Has anyone been advised to stop driving by their" + (show)
@sueholdenf

Hi. All, Has anyone been advised to stop driving by their

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My mistake there , has anyone been advised to stop driving their car due to their numbness and loss of sensation to their feet , or suggested they modify the car to hand controls .

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 7, 2022
In reply to @sueholdenf "My mistake there , has anyone been advised to stop driving their car due to their..." + (show)
@sueholdenf

My mistake there , has anyone been advised to stop driving their car due to their numbness and loss of sensation to their feet , or suggested they modify the car to hand controls .

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Hi @sueholdenf, There are a couple of other discussions where other members have shared their thoughts or suggestions on driving when you have neuropathy. For me, I'm hoping I'm wise enough to stop wanting to drive when I can no longer feel my feet on the gas or brake pedals.

-- Driving with neuropathy: https://connect.mayoclinic.org/discussion/driving-with-neuropathy/
-- Caring for a parent with neuropathy: When's it time to not drive?: https://connect.mayoclinic.org/discussion/caring-for-a-parent-with-neuropathy/

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1 reply
retired123 | @retired123 | Feb 7, 2022
In reply to @dantic123 "Maveric09 there is help with small fiber neuropathy... I too thought the world was closing in..." + (show)
@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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Is this a surgical procedure like what is done for carpal tunnel issues? Thanks.

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dantic123 | @dantic123 | Feb 7, 2022

yes I think the doctor said can be used for carpal tunnel.

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sueholdenf | @sueholdenf | Feb 8, 2022
In reply to @johnbishop "Hi @sueholdenf, There are a couple of other discussions where other members have shared their thoughts..." + (show)
@johnbishop

Hi @sueholdenf, There are a couple of other discussions where other members have shared their thoughts or suggestions on driving when you have neuropathy. For me, I'm hoping I'm wise enough to stop wanting to drive when I can no longer feel my feet on the gas or brake pedals.

-- Driving with neuropathy: https://connect.mayoclinic.org/discussion/driving-with-neuropathy/
-- Caring for a parent with neuropathy: When's it time to not drive?: https://connect.mayoclinic.org/discussion/caring-for-a-parent-with-neuropathy/

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Thanks for your response , would you consider changing to driving hand controls , my neurologist said , even though the feet may lack sensation , it is the muscles that control the feet on the padals ,

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 8, 2022
In reply to @sueholdenf "Thanks for your response , would you consider changing to driving hand controls , my neurologist..." + (show)
@sueholdenf

Thanks for your response , would you consider changing to driving hand controls , my neurologist said , even though the feet may lack sensation , it is the muscles that control the feet on the padals ,

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@sueholdenf - I would consider hand controls if I had any doubts about my ability with using the floor pedals for braking and gas due to numbness in my feet. @steeldove shared some information on the type of controls she uses in another discussioin here - https://connect.mayoclinic.org/comment/92680/ and may have some thoughts or suggestions for you.

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mariannev | @mariannev | Feb 8, 2022

I did gain 60 pounds in 6 months on Lyrica. Highly recommend treading water or water aerobics…check your community pool for the senior/disability swim times.

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