Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Feb 1, 2019

Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking ” on fire “. My feet have similar issues. This is just one big Ick. Boo

Liked by teetee7, jasont, Mrs. H

Hi, @fredjan2016 – it sounds like you've been through significant pain with your neuropathy. What is the name of the new treatment you will be undergoing with the injections and electronic device?

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@fredjan2016

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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Hello @fredjan2016, I would like to add my thank you for sharing your story along with the other members and also welcome you to Connect. I also have small fiber peripheral neuropathy but I only have the numbness and no pain. I shared what has helped me in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985 It has also helped others with neuropathy pain.

Is this the electronic device your pain management doctor was suggesting?
https://rxfunction.com/our-product/

Liked by Lisa Lucier, rwinney

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@lauraj155

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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@rwinney

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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Oops, looks like I somehow replied to an older post. Well – @lauraj155
Laura, if you're still out there, I'd love to hear how you are doing.

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@pieface1971

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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Pie face: Nice to see there’s a fellow Christian out there there were relies on Jesus and knows how important he is to all of us! Will remember you in my prayers

Liked by lioness

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@birdierobin

Pie face: Nice to see there’s a fellow Christian out there there were relies on Jesus and knows how important he is to all of us! Will remember you in my prayers

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@pieface1971 @birdierobin

Our faith gives us one more way to support and connect with others, whether here or in our daily lives.

Jim

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@rwinney

Oops, looks like I somehow replied to an older post. Well – @lauraj155
Laura, if you're still out there, I'd love to hear how you are doing.

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I wonder if Laura’s neurologist did a punch biopsy to diagnosis small fiber biopsy!
That is how I got my diagnosis made.
Now awaiting neurologist appointment made six months ago. Did you have autonomic testing done?

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@birdierobin

Pie face: Nice to see there’s a fellow Christian out there there were relies on Jesus and knows how important he is to all of us! Will remember you in my prayers

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Oh my Goodness Robin Thank You!!!
It means so much to me that you responded
To my Faith!! Yes!!!! What I keep holding onto is that God has me here for His Glory even through the pain and Thank God He sent us a Savior Jesus Christ is Lord!!
It’s going to be a glorious day when all us
Fellow Belivers get to THE PAIN FREE ZONE!!!
In our Heavenly Home with Him🙏 I will
See you by the river of life!!! Hope you are well
And comfortable with better days ahead!
Blessings upon you today, tomorrow and always🙏♥️

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@jimhd

@pieface1971 @birdierobin

Our faith gives us one more way to support and connect with others, whether here or in our daily lives.

Jim

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Praise Jesus through our pain!! It’s the only way we can get through. Maybe soon JESUS will step out in the Eastern Sky and call His Children us Fellow Believers home to Heaven
To the PAIN FREE ZONE🙏♥️ See you by The
River of Life! Be Healthy Be Safe😊

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@clairecas

Ugh, I hear ya.
My experience is only mine. But I would find specialist, they can do punch skin biopsy acs some other tests and dif blood work.
I'm in ny, i'm waiting for my appt for punch skin Biopsy by only specialist in area outside of nyc.
None of the anti seizure meds worked for me.
I just started cymbalta last week and it does seem to help. I also use medical marijuana in oil form from licensed dispensary. As well as tramadol.
Maybe u can ask John who is one of the leaders here on this forum.
He seems to find a link for everything ! Which is great !
I hope this helps even a little. If nothing else, this mayo clinic forum confirms you are not alone by far.
The gas to be someone in all of ohio that can help you w this exceptional pain.
Best of luck,
Claire

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Be extremely careful, some of the meds lower sodium!! January 2019 I had a nine day hospital
Stay because of critical low sodium I almost died. So, if you Watch salt already because of joint pain. Just Be aware. I PRAY no one has to experience What I went through last year. I still have Flashbacks to that time in my life!!
Blessings of comfort to you🙏

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@pieface1971

Oh my Goodness Robin Thank You!!!
It means so much to me that you responded
To my Faith!! Yes!!!! What I keep holding onto is that God has me here for His Glory even through the pain and Thank God He sent us a Savior Jesus Christ is Lord!!
It’s going to be a glorious day when all us
Fellow Belivers get to THE PAIN FREE ZONE!!!
In our Heavenly Home with Him🙏 I will
See you by the river of life!!! Hope you are well
And comfortable with better days ahead!
Blessings upon you today, tomorrow and always🙏♥️

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Pieface: you bet we Are headed to the pain free zone I can’t even imagine no more sickness no more tears no more pain – and no more sin! you probably feel like I do, I’ll be so happy when sinning is not our carnal nature any longer. Praise God! The fact he loves us enough to die for us is something I will never understand I almost feel like I’m not worth it but to him we are all worth it and he loves us all and he died for us and you bet he’s gonna come back for us! I know a lot of people probably think it’s silly but my faith gives me through all these hardships. I hang onto the saying ‘if he brings you to it he’ll get you through it’. And when my neuropathy starts to hurt me at a number 12 on a scale 1 to 10 (if you catch my drift) it hurts so bad I just freeze in my tracks and sometimes I start reciting the Lords prayer until it goes away and it always has, it just pray & cry. Sometimes it’s so hard to rejoice Him in our pain but it’s required of us. God bless you & take care

Liked by lioness

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@birdierobin Amen I made him my CEO long time ago he will bring you through it

Liked by Robin

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@pieface1971

I wonder if Laura’s neurologist did a punch biopsy to diagnosis small fiber biopsy!
That is how I got my diagnosis made.
Now awaiting neurologist appointment made six months ago. Did you have autonomic testing done?

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No, I have not, have you? I'm not sure what it entails.

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@pieface1971

Praise Jesus through our pain!! It’s the only way we can get through. Maybe soon JESUS will step out in the Eastern Sky and call His Children us Fellow Believers home to Heaven
To the PAIN FREE ZONE🙏♥️ See you by The
River of Life! Be Healthy Be Safe😊

Jump to this post

Yes see you at the River of Life

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@birdierobin

Pieface: you bet we Are headed to the pain free zone I can’t even imagine no more sickness no more tears no more pain – and no more sin! you probably feel like I do, I’ll be so happy when sinning is not our carnal nature any longer. Praise God! The fact he loves us enough to die for us is something I will never understand I almost feel like I’m not worth it but to him we are all worth it and he loves us all and he died for us and you bet he’s gonna come back for us! I know a lot of people probably think it’s silly but my faith gives me through all these hardships. I hang onto the saying ‘if he brings you to it he’ll get you through it’. And when my neuropathy starts to hurt me at a number 12 on a scale 1 to 10 (if you catch my drift) it hurts so bad I just freeze in my tracks and sometimes I start reciting the Lords prayer until it goes away and it always has, it just pray & cry. Sometimes it’s so hard to rejoice Him in our pain but it’s required of us. God bless you & take care

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Amen and Amen. Let’s Praise The Lord through it all!! The Same power that Rose JESUS from the grave lives in us!! The enemy has been defeated and death could not hold
Hold JESUS down!! Let’s pray we sleep well
Tonight in Jesus.🙏

Liked by Robin

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