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Member Neuropathy Journey Stories: What's Yours?
Neuropathy | Last Active: Nov 23 5:30pm | Replies (573)Comment receiving replies
I am interesting to hearing your stories for SFN..I will tell you mine..
I was put on a medication for peri menopause in 2010 ..very short term , came off cold turkey..Ended up with severe symptoms..
I have severe nerve pain ...sharp pins and needles, burning, acidic flowing entire body , sensation of inflammation, chemical feeling flowing ...
Pattern ...whatever sensation I have if it's pins and needles..it goes throughput entire body head to toe , literally..inside my head , eyes, nose, ears, face, mouth , teeth ,throat , arms ,hands, legs,feet , if I scratch , rub, massage whatever symptom I have at that time it will exacerbate in my mouth , the intensity on my body don't change or exacerbate ..that only happens inside my mouth ...My dog , kids can jump all over me it doesn't effect me ...the nerve pain sensation rotates from one sensation to another...there's times it gone almost completely ...it effects my muscles from the firing, at times feel.like I sprained my ankle or wrists , that comes and goes...
I had every test availed other then a biopsy..but had a different kind of test for SFN that was negative in 2014...I had no Large fiber neuropathy either..I had autoimmune tests done..all negative ...I know no one actually d/x me but I would like to hear if these symptoms sounds like SFN ...I also have tight muscles in my neck and shoulders ...I am functional but have severe pain..
I don't have the hot or cold symptoms
I don't have sock like symptom
I can feel light touches including a feather
The only symptoms I have mostly is nerve pain and muscle tightness and aching muscles in arms ..shoulders...
Any thoughts be greatly appreciated ..thank you for taking the time to read..
Replies to "I am interesting to hearing your stories for SFN..I will tell you mine.. I was put..."
Hello @laura1963. I'd like to add my welcome along with @artscaping. You will notice that I have moved your post into an existing discussion on Neuropathy Journey Stories which you can find here:
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
I am glad the pair of you connected so quickly and are comparing notes!
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Good evening @laura163, and welcome to Connect. It doesn't look like I have to remind you that we need more information about the symptoms your body seems to be dealing with right now. You indicate that you haven't had a skin punch biopsy anywhere on your body.....ankles, hips, or other areas. This is a special test that measures the number of nerve cells you have in the nerve fibers. For example, my was .09%. That indicates that I don't have enough of those tiny fibers to be able to receive appropriate messages from my brain. So....my brain sends pain signals.
As I perused your symptoms I found many to be exactly like mine. My SFN actually showed its character early in my arms, hands, and skull. The skull area can really get riled up at times with pain as well as tingle-tangles. (my terms for the numbness and nerve pain). My feet started with a few twinkle toes and quite quickly, or so it seemed, moved on across the bottom of my feet and now seem to be knocking on the door at and above my ankles.
So....you don't have the hot and cold symptoms. That is rewarding. I generally have ice-cold feet and hands as opposed to hot ones. It does seem like my sense of the cold is much more severe than my MFR therapists feel from the outside.
What was the "other kind of SFN test you had in 2014? I have only heard of the skin punch biopsy test. I also have not read any post from a member with feelings that appear to end up in your mouth. A question. I do not know how old you are but I would like to know if you have been diagnosed with Osteoporosis or Osteopenia. That is when my mouth issues came into play.
You mention your medication in 2010. Are you thinking that it started your SFN?
Would you be so kind as to share with me what you actually do to alleviate your pain and discomfort? Just to get us started I will tell you that I have two sessions a week of MFR, Myofascial Release Therapy. There are two therapists with me in order to be able to work on feet, hands, etc. etc. Without MFR, I wouldn't be driving or having any kind of a happy, joyful life.
Are you looking for relief, answers, and current research information? OR??????
May you be safe, protected, and free of inner and outer harm.
Chris