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.

Maveric09 | @maveric09 | Feb 22, 2022
In reply to @trishh "Maveric09 Hi I had skin biopsies to confirm SFN. it is progressing from toes up shins...." + (show)
@trishh

Maveric09
Hi I had skin biopsies to confirm SFN. it is progressing from toes up shins. My neurologist now, insurance wouldn't pay for my prior neurologist, she doesn't know that's much about SFN. I talked to hear after my own research about the autonomic neurological effects of SFN. She agreed that it is likely i have it too which affects BP, heart, etc.
I feel alone in my pain but have a great Lyme disease doc. All day I developed the polyneuropathy from Lyme and 3 co-infections.
I was paralyzed 3× back in 2000 but recovered each time with therapy. But the pain stayed which is constant.
I am so frustrated that no one has effective treatments. I am allergic to Gabepentin and Lyrica made me gain ton of wt.
Have they tested you for Lyme? I was a Park Ranger we think when I got it.
I have asked my neurologist for another EMG/NCT as its seems spreading. But that's months away.
Few of my docs gave heard of SFN and ant understand the severe pain.

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Thank you for sharing your story, @trish1 I have been checked and am negative for Lymes. While I do have some of the more common SFN symptoms like tingling in my hands and toes, for me, it's really been the autonomic dysfunction that's been quite challenging such as dizziness, chest pain, heart rate and BP fluctuations. In this regard, I've not been able to find the appropriate physician or care team to put their collective hats together and come up with a coordinated treatment plan. My cardiologist says "well, your heart is fine so go talk to your neurologist." That's not very helpful.

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1 reply
trishh | @trishh | Feb 22, 2022
In reply to @maveric09 "Thank you for sharing your story, @trish1 I have been checked and am negative for Lymes...." + (show)
@maveric09

Thank you for sharing your story, @trish1 I have been checked and am negative for Lymes. While I do have some of the more common SFN symptoms like tingling in my hands and toes, for me, it's really been the autonomic dysfunction that's been quite challenging such as dizziness, chest pain, heart rate and BP fluctuations. In this regard, I've not been able to find the appropriate physician or care team to put their collective hats together and come up with a coordinated treatment plan. My cardiologist says "well, your heart is fine so go talk to your neurologist." That's not very helpful.

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We need educated physicians. Mine say same thing. " What does your Neurologist say".
I just put ice on top numb pain but have support hose and circulation socks on top help with cold feet. Life is crazy with this. Its exhausting.
I had hip replacement surgery in November but the SFN pain is the worst, so constant.
Hoping we find help soon. My quality of life it 62 is terrible.

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1 reply
taml | @taml | Feb 22, 2022
In reply to @maveric09 "Also I learned that the Mayo Clinic declined my case despite having a positive skin biopsy..." + (show)
@maveric09

Also I learned that the Mayo Clinic declined my case despite having a positive skin biopsy confirming SFN. That was really disappointing because. I was hoping they could help me with a treatment plan.

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Sad for you maveric. Tried mayo when my pain started. They looked at my x-rays and said I could find someone local. Pretty sure it isn't bone related . But.....
Still have to wait for neurologist April 15. Did find a seemingly helpful pain specialist, but when I mentioned vaccine, she steered away from that. Seeing her again tomorrow.
Thank you for your input.

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taml | @taml | Feb 22, 2022

Anyone.... I read about someone new, who actually had a lumbar puncture.... I think was after a vaccine reaction. And shingles was found and treated. Cannot find that posting again .... Wanted to find out how they actually got the doctor to test that. I'm told my MRIs show no infection, and I have no fever. So won't do that.
Thanks for any connection to that posting.

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virginiashort | @virginiashort | Feb 23, 2022
In reply to @rubyz "@johnbishop This is truly helpful. I have had numbness and occasional tingling w/o pain in both..." + (show)
@rubyz

@johnbishop This is truly helpful. I have had numbness and occasional tingling w/o pain in both toes to mid-foot for the past 10 years, which seemed to correlate with when my microscopic colitis began but it is getting worse. Not having diabetes or having had chemo, I blamed in on aging and a crushing injury I had to one of my feet years ago. It was the bilateral nature of the numbness that clued me in. I also have severe osteoporosis. Lots of new surprises in my 7th decade. Aging is not for sissies. Appreciate your wisdom and that of @artscaping . It's a huge offering of kindness and compassion to be helping all of us.

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JohnBishop….are colitis and sfn related?

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 24, 2022
In reply to @artscaping "Good afternoon @pacer3702. On Mondays and Thursdays I have MFR (myofascial release therapy). During the session..." + (show)
@artscaping

Good afternoon @pacer3702. On Mondays and Thursdays I have MFR (myofascial release therapy). During the session one of the therapists uses MFR on my feet. After the initial pressure, they use their knuckles to release the constricted tissue on the bottom of my feet. This brings back the sensation that they are alive and sensitive to objects like the gas petal and the brake.

I feel an obligation to be a safe driver and to not place myself or anyone else at risk. Then I do the "Legs up the Wall" yoga pose every day for a few minutes as part of my at home neuropathy exercises.

Have you been diagnosed with small fiber neuropathy or some other type of loss of feeling in your feet?

May you be content and at peace.
Chris

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@pacer3702, I'm back with some additional information for you about those feet. Here are the correct words that denote the process for keeping me driving safely on the road.

"Bilateral leg and foot release followed by soft tissue mobilization of the plantar area using cross-fiber friction techniques."

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pacer3702 | @pacer3702 | Feb 24, 2022

Thank you, Chris! I appreciate this additional information.

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retired123 | @retired123 | Feb 25, 2022
In reply to @artscaping "Good afternoon @pacer3702. On Mondays and Thursdays I have MFR (myofascial release therapy). During the session..." + (show)
@artscaping

Good afternoon @pacer3702. On Mondays and Thursdays I have MFR (myofascial release therapy). During the session one of the therapists uses MFR on my feet. After the initial pressure, they use their knuckles to release the constricted tissue on the bottom of my feet. This brings back the sensation that they are alive and sensitive to objects like the gas petal and the brake.

I feel an obligation to be a safe driver and to not place myself or anyone else at risk. Then I do the "Legs up the Wall" yoga pose every day for a few minutes as part of my at home neuropathy exercises.

Have you been diagnosed with small fiber neuropathy or some other type of loss of feeling in your feet?

May you be content and at peace.
Chris

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Hello ~ Thanks for the info. Please who does this? Neurologist, podiatrist or massage therapist? I would like to inquire with the proper person.

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Lorraine | @lmill7 | Feb 25, 2022

Hi-I’m sorry.
Neuropathy was just added as a condition to be researched last yr.
I’ve got mine from spinal trauma n broken fusion. I can’t get anyone to even talk to me in 21 years until 2019 when I found my old pain Dr. Lots don’t even give treatment!!
There’s a few orgs-just do a search.
In my state there’s NO specialist anymore so consuyourself blessed that way.
Yes - it will continue to worsen but you can do natural supplements n holistic treatment to help with pain if u have it.
Mine is horrible. Like my body’s on fire n pins / needles 24/7. Sheets hurt my skin.
Vitamin C is important.
Eat clean n get the best water filter u can buy.
No processed food.
I’m not absorbing vitamins n minerals for a long time and I’m pretty sure my neuropathy is in my gut now too.
Get your gut stable n use a good probiotic.
I troll neuropathy sites n read what naturopathic docs do.
I’ve learned a ton in a few years.
And, sadly most of us have a been accused of lying or being drug addicts. My surgeon refused to speak to me, or fix my broken fusion. If he was civilian I would have sued him.
Alpha Lipoic Acid is a good supplement. Helps with pins n needles n protects the nerves.

Educate yourself because there’s a lot of stupid out there. Look up treatments in the National Institute Health too. Functional medicine has been a big help for lots or a DO practioner.
Don’t lose faith. God Bless

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janineca | @janineca | Feb 27, 2022

Hello, I'm sorry to hear you have this diagnosis. I'm a 50-something year old female, and was diagnosed with SFN (Small Fiber Neuropathy) almost 5 years ago. I take Lyrica, and it helps but try to only take what you need to function, as there is a lot of discussion about the negative effects of it. For me, it was some more brain fog and weight gain. I can answer some of your questions from my personal experience. I'm not a medical professional (yet. I'm in school right now for Occupational Therapist Assistant) but you can get a lot of information about SFN from the nih (.gov) website.
I clicked on your post because I'm trying to get some support for my increasing pain levels. I'm being woken up in the middle of the night with such a scare of what I'm feeling in both of my entire legs (bilateral). I need help with a strategy that others have tried (not another pill) to help with this new issue. I've also been diagnosed with Fibromyalsia, so I'm no stranger to pain.
Please reach out to me when you have a question or just need support. I'll do the best I can to support you.
-Janine

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