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Is body pain, dizziness, and acid reflux normal with SFN?

Posted by Maveric09 @maveric09, Mar 21, 2022

For those of us with SFN, does anyone else experience body pain and dizziness? My understanding is that it is supposed to affect the hands and feet. I am experiencing awful chest and flank pain, dizziness and acid reflux. I constantly feel like I have a lump in my throat. ENT says likely Laryngo-Pharyngal Reflux (silent reflux). My neuro says this is all part of SFN, but as I look across the posts in this community I feel like I am an outlier.

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 28, 2022
In reply to @markie59 "Unfortunately, you are not an outlier. My SFN started in my left foot and progressed up..." + (show)
@markie59

Unfortunately, you are not an outlier. My SFN started in my left foot and progressed up my legs (left more than right) and then to shoulders, back, neck, fact etc. Now my digestive system is being impacted -- (probably some gastroparesis) along with gastro reflux and nausea. My blood pressure and heart rate are also impacted. Unfortunately, this is a common trajectory. And, I don't know what helps.

Jump to this post

Hello @markie59, Welcome to Connect. You are right about not being alone on this neuropathy journey. I think we all have been searching for answers at one time or another. I have idiopathic small fiber PN but fortunately just numbness and no pain. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/

The Foundation for Peripheral Neuropathy has a lot of good information on neuropathy if you haven't already seen it - https://www.foundationforpn.org/

Have you made any lifestyle changes or tried any treatments to see if they would help your symptoms?

REPLY
obackus | @obackus | Mar 29, 2022
In reply to @markie59 "Unfortunately, you are not an outlier. My SFN started in my left foot and progressed up..." + (show)
@markie59

Unfortunately, you are not an outlier. My SFN started in my left foot and progressed up my legs (left more than right) and then to shoulders, back, neck, fact etc. Now my digestive system is being impacted -- (probably some gastroparesis) along with gastro reflux and nausea. My blood pressure and heart rate are also impacted. Unfortunately, this is a common trajectory. And, I don't know what helps.

Jump to this post

When I read your post, I see myself. I have exactly the same issues along with a neugenic bladder to boot. I am trying very hard to find some help. The pain can be unbearable at times. So tired of feeling poorly evey dya

REPLY
markie59 | @markie59 | Mar 29, 2022

I keep bracing myself for that to happen next (neugenic bladder). I'm sorry. It is an exhausting and debilitating condition. I just finished a 3-month course of Steroid IV infusions and I don't think they helped at all. I'm now seeing specialists to manage the possible harm and the pain caused by the SFN (gastroenterologist, cardiologist). I keep wondering when/if it will plateau or maybe recede?! I'm considering IViG (I will try almost anything) but as we know it is expensive and insurance has rejected me twice. I like to think I'm describing, not complaining. But there is comfort to be found in "fellow-sufferers" so thanks for that.

REPLY
smigal | @smigal | Mar 29, 2022

Totally understand I was rejected as well. The insurance said I had enough killer T cells but they were weak. Trying acupuncture with less needles again. Good Luck

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