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Recently diagnosed with Small Fiber Neuropathy - so many questions
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.
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I advised myself it was time to stop driving due to the "numbness". Not a safe way to drive.
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1 ReactionI have neuropathy from spinal issues in my right lower leg, with numbness, tingling, and intermittent pain. The absolute best thing I did to feel I was safe to continue driving was to trade in my 2009 no-frills Nissan Sentra and buy a 2020 used Altima. The newer cars have WONDERFUL safety features: auto-hold (holds the car while at a stoplight so you don’t have to keep pressing the brake), automatic front braking (slows you down if you’re coming on too fast or too close), automatic lane-centering (keeps you in the middle), automatic rear-braking (if you are coming too close to something while backing up). Driving is SO much easier now. I use the auto-hold at every red light and while in the drive-thru at Dunkin Donuts!
Not to shill for Nissan, but they do have a factory hand-braking system that can be installed if it came to that, but like somebody said on this site- it’s a nerve issue much more than a muscle strength issue. I also looked at Subaru Outbacks- they have all the safety features above too.
For safety, I also don’t drive at night and go to stores at times working people are at work and children are in school (10-2:00, never on weekends)
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2 Reactionsthanks I use cannibis to help me sleep. What is Voltaren?
Just want to say how great and useful your advice is . I never gave serious thought or did any research because in my mind I was believing that hand pedals etc were so special order or prescription with unaffordable cost and lead times (in normal supply chain times). Your response is so positive on trading up, getting current, and showing manufacturers’ safety upgrades. Your input is so valuable and appreciated for our safety, and more importantly, the safety of all people we share the roads with. Thank you!
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2 ReactionsI do wonder if there is numbness in the feet how do you deal with walking? Driving gets you there, but then what? The numbness messes with my balance and proper walking without aid. I still need a person with me.
I think it’s important to do what makes you feel safest and if that’s to have another person along, then best to do that. I would suggest that it’s worth a try to ask your Primary Care Provider to refer you for Physical Therapy. The PT will ask you your goals (maybe to walk without hands-on assist and to be given a Home Exercise Program for strengthening and balance?). The PT will evaluate your gait and offer training/suggestions for being able (if possible and safe) to walk with a recommended assistive device, rather than a human.
I use a straight cane at times (graduated from a rolling walker) to go into a store, I also try to park close to a shopping cart drop-off and snag one to balance myself while heading into the store. I also wait for people unloading their carts into the car trunk and chat 😊Everyone is always glad to hand off their cart. I never go up or down steps that don’t have a railing, try to avoid uneven surfaces (lawns, mulch), am very careful stepping off curbs, never back up/step backwards without something or someone to steady myself. Living with poor balance is a whole way of life, but better to be aware than on the pavement.
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2 ReactionsThank you for your reply. I have tried PT and do many of the things you mentioned. The minute I put on shoes and walk on a hard surface I'm in trouble. At home in socks and walking on carpet I can manage quite well. Day to day is different. I do have a cane and a rollator but since I can't properly feel the car pedals I do not drive. SFN is a journey!
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2 ReactionsHello, I need lots of support in my shoes. But, with heavy boots I do not feel the ground. I purchased tie shoes from Lands End which have less of a frame and therefore I can feel the ground with some support.
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1 ReactionHello, Chris and others. I was diagnosed with SFN in 2004. My neurologist at the time gave me a test which was very painful. He directed me to go to a teaching hospital. At that time, I went to Shands in Jaxsonville. Because of some sort of mixup, my neurologist didn’t send my needle results, so they gave me the test again. Needless to say, I never went back to that Doctor. Shands was no help except to put me on gabapentin and atriptalyne.
I’ve been on gabapentin since then, only increasing the dosage. Because of getting older 🙂 , I had to stop the amitatripyine.(?)
The only thing that has helped is a spinal stimulator, but I had to have it removed.
Sooo gabapentin 3600 mg a day, and still hurting, cold feet,etc.
Sorry for so long a post
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2 ReactionsGood evening. I so appreciate your not so long post. I think you probably have more experience in the last 18 years than most of us. Why did being older make it impossible to continue with amitryptaline (
May you be content and at ease tonight.
Chris