Just Diagnosed with Small Fiber Neuropathy

I'd like to invite @boo55 @lauraj155 @lavieauxusa1972 @albiet @peggyn @lorirenee1 to share whether they can relate to any of the symptoms you mentioned you were having, @pieface1971:
- small nerves in both feet are dying as it also travels up both legs
- heart arrhythmias
- sluggish bowel
- retention post urine

They may also have some tips from their own experiences of how they have coped with their symptoms.

@reecey also mentioned being on the verge of being diagnosed with small fiber neuropathy. Do you now have a diagnosis, reecey?

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I have slow heart rate. I have a loop recorder to monitor the heart. For sluggish bowel, I use Metamucil. I have been taking magnesium lately, which seems to keep the bowels moving without Metamucil. For the urine issue, you could get a device implanted in the lower part of your back that would regulate the urine output. I have not done that yet.

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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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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.

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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.

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I had a normal EMG yesterday so I don’t have large fiber involvement. The Neurologist did the skin biopsy to see if it is small fiber which I think it might be. I hope to get results in a week or so. I had a normal EMG in 2005 when it first started however they didn’t have the skin biopsy then or it wasn’t offered. The pain actually lessened through the years but now it’s back with a vengeance. I also was diagnosed with Erythromelagia but it is relatively mild but the other nerve pain is vicious right now and am unable to do much. The Neurologist does not know what is causing the fasciculations in feet, toes, legs. I’m just wondering if it’s from nerve damage although the fasciculations usually occur in large fiber. It’s all so strange and difficult to figure out. Thank you for any insight you may have. -Laura

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Hi Laura
I'm very sorry to hear of your diagnosis. I too have SFPN, for almost 4 years but, wasn't diagnosed until last Feb. I had a EMG/Nerve Conduction 2 years ago which was normal. They sent me on my way, as did the Rheumatologist and several Spine docs. I've progressed rapidly since fall of 2018. I am now scheduled for another EMG/Nerve study as per my request. My Neurologist didn't think I needed bc I don't line up for auto immune based on last year's spinal tap BUT, due to my decreased ability, weakened muscles and muscle twitching in my legs, he agreed to rule out further problems. The disease can really keep one guessing. Wish I had more for you. Sorry. All the best to you in your journey. Keep us posted and be well.
Rachel

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Thank you so very much for sharing your story with
Me. It’s was kind of you to take the time. My pain
Drags me down so bad some mornings it takes so much effort to get out of my bed because once I start walking the pain will intensify. You are so right it’s difficult to get doctors to listen and understand our pain. The only thing that keeps me going is I have JESUS and am a Christian and I know He will get me through this world and take me to my Heavenly Home with Him One day where there will be no more pain, no sadness, no tears. Thank God He gave us a Savior JESUS Christ Our Lord!! I am so sorry about your pain I give you my empathy and understanding. I pray peace, pain relief and better days over you in Jesus Name🙏

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