Member Neuropathy Journey Stories: What's Yours?

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

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..

Hi Chris , thank you for your reply , my report states SFN testing results.... Tested for cooling and heat test were normal and laser doopler flare
imaging was normal

They done large and small fiber neuropathy

I am 58 years old , in immaculate health ..No Osteoporosis or Osteopenia...No Diabetes , No thyroid , No blood pressure issues , No autto immune , No RH , No Arthritis , No physical , or structual , mental , cognitive issues at all...No medical conditions at all...Very healthy ..except for what happened after I cold turkey off a med that I should of never taken ...My ex forced me to take it ...

I never took medications in my life , prior or since ...I deal with the pain as much as possible ...I was always physically active ...until recently ..the intensity seemed to get higher ..

You mentioned your skull feels nerve pain...

For me it's not on my skull ...it's inside where the brain is ..that's where I am dealing with all the nerve pain ...Whatever that's going on firing neurons , electricity, burning, or Pons and needles , or feeling of inflammation, or turns in to a chemical feeling ...whatever feelings inside my head it's transpired throughout my entire body ..literally head to toe ..not one fiber is untouched ...I don't have blood pressure issues , nor dizziness, or physical weakness , I sleep with a fan directly on my face body , as hubby likes it too hot innocent room..lol...that cold air fan or even heat don't effect me at all...

As far as the medication I took don't cause SFN ..it can mimic alot of diseases..but nothing more then that...it's been 12 plus years I been dealing with this ..as others I know are also suffering immensely from repercussions from that drug known as benzodiazapam...

I work from home , managing my own company this entire time ..But in chronic pain

Can you tell me do you have the berne pain inside your head ? Or it's just on the skull ?

Do you have any other medical issues ?

Do you take medication?

Thank you for replying greatly appreciated

Have a great night

Good evening. It's bedtime and I see you have been moved up in the world because of your good journey story.

So........I will thank you for responding to my inquiries so promptly. Let's move on a bit this evening and see what we discover.

First......I think I led you astray with the head report. Yes, the head pain is inside and sometimes just down the back of the neck. There is also quite a bit of what I call tingling pain. It used to worry me a lot and I try to always relate it to what might be doing the initiation. I do know some of it is stress.......and frequently the side effect of my latest condition......cognitive decline? When I can't remember something then I begin to worry and my head seems to react. I checked this morning during Yoga and my head never heard even in a "Downward facing dog" pose. I also had a major concussion when I fell off my horse and I think it comes back to pester me.

And let me check your other inquiries. Medical issues........I have what they call radiculopathy. That refers to sensitive nerve endings that appeared as a result of one of the 10* orthopedic surgeries that resulted from falling, aging, and arthritis. Three were spine surgeries so I am now pretty careful. That is why the cause of my neuropathy is labeled traumatic. Three rear-end car accidents also added some issues.

Other than that I have always been athletic and healthy. I belonged to a trekking group of women and we walked almost every day to get ready for week-long trips to interesting places like the Ring of Kerry in Ireland.

Regarding medication, I absolutely abhor taking medication of any kind when I don't know how my body will respond. So my neuropathic pain is completely controlled by medical cannabis. I was introduced to cannabis by a nurse friend 10 years ago and have been on my own figuring out appropriate products and doses since being diagnosed with SFN.

I too ended my working career by owning my own business. It was a wonderful experience.

Would you please tell me more about your statement about feeling SFN head to toe throughout your entire body? Are your hands numb most of the time?

Goodnight........

@ncc2023
Started with sharp pains in my feet in 1997. Sent to Kentucky Hosp in Louisville checking for MS.
No MS diagnosis but told I have fibromyalgia. No drugs were helpful and just suffered until 2002 and put on Gabapentin. No symptoms but brain fog.
I also have Tinnitus since 1996 (a high pitch ringing) and now have balance problems falling a lot.
Trying to find out if the two are related and if it's true that Tinnitus causes brain cells to die.
When walking I tend to occasionally drag my right foot which causes me to fall. I have taken PT for balance to no avail. Any suggestions?

@ncc2023
Started with sharp pains in my feet in 1997. Sent to Kentucky Hosp in Louisville checking for MS.
No MS diagnosis but told I have fibromyalgia. No drugs were helpful and just suffered until 2002 and put on Gabapentin. No symptoms but brain fog.
I also have Tinnitus since 1996 (a high pitch ringing) and now have balance problems falling a lot.
Trying to find out if the two are related and if it's true that Tinnitus causes brain cells to die.
When walking I tend to occasionally drag my right foot which causes me to fall. I have taken PT for balance to no avail. Any suggestions?

I fell while walking my small dog on Dec 1 2022. Had wrist surgery with a
plate and screws to correct. I am now terrified to walk outside! Do you
get depressed often?

Hello, It is good to discover this site and begin to read through some of the stories others have posted. I sometimes feel quite alone in my struggle with neuropathy. It is difficult even for my beloved spouse to understand. I look well and continue to be very active--blessed in that way. I ski vigorously, walk several miles a day when that is not possible, bike during the summer, etc. But I hurt, too. And am mostly numb from the waist down. I am 67 years old, male, retired (mostly). My only other health concern is aortic stenosis. My heart functions well, but I will need a valve replacement in the next few years.

My story began as some of yours did, with a sharp pain in one toe in one foot. Nobody could figure out why. I saw a podiatrist, who removed the nail and another, who cut a tendon. No change. I could still do what I was doing, but end up with screamworthy pain at times. If I took off my shoe, it would pass quickly. Later, I noticed that the toes on that foot had become rather numb, especially the third and fourth toes. And then, a month or so after that, I noticed that the other foot was also becoming numb. I went to my GP; he diagnosed me with Morton's Neuroma and told me to buy wider shoes, which I did. Little improvement.

About that time, I had a cystoscopy done, to see if there was a way to manage frequent urination--prostate enlargement was not the problem it turned out. But instead, I ended up with a urinary tract infection. The doctors ordered cipro and within days, I had shooting, burning, prickling pain up and down my legs. Soon after, numbness set in. This was 7 months ago. Since, the burning pain and superficial numbness has crept up to my waist. I have also experienced burning and odd feelings of discomfort around my ribs and heart on the left side, and often, tingling and "falling asleep" feelings in my fingers on both hands, especially at night in bed. That can quickly be remedied by moving my hands, but it comes back quickly, too. I have no idea if that is related to the PN in my lower body.

I've been to Mayo twice and have another appt soon. So far, no diagnosis beyond idiopathic. Most tests are normal, although my autonomic reflex screen was somewhat strange. I need to have that repeated without taking certain medications. But to this point, the docs have ruled out some conditions and still do not have an answer as to why I am going through this, whether it will go away, continue to progress, etc. All of which makes me very, very anxious. I have a hard time thinking about anything else. Doc prescribed Gabapentin but it does not seem to help; rather, causes my vision to blur slightly and often, I have a slight headache. I am thinking of discontinuing it.

I am using an app called curable.com to try to reprogram my brain from focusing so exclusively on the pain. This has been the most helpful thing so far. Also: prayer.

But it feels pretty lonely and sometimes kind of hopeless. I desperately want to handle aging better than this.

Sitting is very difficult for me. An hour or so and I'm pretty uncomfortable. I desperately want to see my Mom (89 and not in good health) and two of our kids, all of whom live in the NW, far from us. So we are planning a trip. I must admit, I am concerned about traveling and discomfort--and I don't want to continually complain about my neuropathy sensations to my wife!

Well, thank you for listening and also sharing your stories. I hope to glean some helpful information from you and if nothing else, my story, will also help you to know that you are not alone in your suffering.

@ncc2023
Started with sharp pains in my feet in 1997. Sent to Kentucky Hosp in Louisville checking for MS.
No MS diagnosis but told I have fibromyalgia. No drugs were helpful and just suffered until 2002 and put on Gabapentin. No symptoms but brain fog.
I also have Tinnitus since 1996 (a high pitch ringing) and now have balance problems falling a lot.
Trying to find out if the two are related and if it's true that Tinnitus causes brain cells to die.
When walking I tend to occasionally drag my right foot which causes me to fall. I have taken PT for balance to no avail. Any suggestions?