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Just Diagnosed with Small Fiber Neuropathy

Neuropathy | Last Active: Jul 4, 2023 | Replies (235)

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@pieface1971

Have you have autonomic testing? I have had a mitral value prolapse for years with tachycardia take beta blocker med to slow it down. My A1C Has been in normal range.
Going to see a neurologist March 10th after waiting five months for appt!! Primary care no help. Feet burning, tingling, walking on fire numb, traveling up lower legs, positive skin
Biopsy last August for small fiber neuropathy.
Calcium elevated on no calcium supplements.
Constant battle to know what to eat. Sodium
Stays low. In Hospital for low sodium nine days
Jan 2019 was critical almost did not survive.
I am constantly struggling with nerve pain
Symptoms. Thank God for Jesus!!

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Replies to "Have you have autonomic testing? I have had a mitral value prolapse for years with tachycardia..."

Diagnosed with small fiber peripheral neuropathy 5 years ago when my feet would get hot at night under the covers. The Neurologist said I had it a long time before I was diagnosed. He confirmed the diagnosis via a biopsy at my foot, knee and hip. My uncle had it, my sister had it and my brother has it. The good thing is my Neurologist told me it won't kill me. There is no cure and it will only get worse with time. A few months later the pain started and it has only gotten worse. Now my feet feel like they are on fire, shooting pains, pins and needles and numbness from my foot halfway to my knee. No medications work for me, but work great for my brother. I discovered that if I reduce my carb intake, exercise for 30 minutes 3 times a week, stay off my feet and stay away from medications that can raise my blood sugar, I have less pain. I have to keep my feet and hands out from under the covers at night or the pain wakes me up. Frequently, I have to keep soak socks in tap water and put them on my feet when the pain breaks through the pain medication.

There is nothing to be scared of. Just make sure the doctors deal with your pain. With out pain medication I would be in the ER because of the pain. The opioid crisis has doctors afraid to prescribe opioids for people with cronic pain. I would gladly stop taking opioids tomorrow if they had something else to ease my pain.

I have a new pain management doctor and he is going to try injecting some numbing medication just above my feet to help with the pain. If that helps he will install some electronic device above each foot. Has anyone else tried this approach?

Before I was diagnosed with neuropathy I had a desk job for 20+ years, I had been a runner for 15 years and ran a few marathons. I also lifted weights and spent a lot of time outside. Being healthy didn't keep me from getting the disease.