How many here are in 30's and 40's?
 

Mine started mildly at 38 and went full blown at 39.

NOT me
 

Oh, I wish I were in my 30's or 40's. Well, maybe not. I like being in my 60's some days.

But if you are asking when NT members first had PN symptoms, then I would have to go even lower than your question. Mine began in my late 20's.

If you are looking for members that are in your age group that are experiencing the same plight, then I am too old. :)

Hope all the young ones here will respond to your thread.

Mine fully blasted me the week of my 38th birthday in Feb 2014. I has some pretty obvious signs the year or so leading up to that.

I am. Have been dealing with chronic pain for more than a decade.

Mine showed up when i was 43, I am now 44, will be 45 in a month.

Mine is tricky. Diagnosed diabetes related, could very well be so, though despite favorable A1C, ~22 months of vegan eating, from on my way to 44" waist to a 34" waist... everything I can control I do, reasonable to unreasonable.

Progression still moves on. It is glacial compared to acute forms I read about here, but when this started my arms were only affected during flares. Now I am arm and leg guy all the time, though my legs are worse.

I feel there is more going on, though currently reside with short stick diabetic poly neuropathy as my diagnosis. I am going to push for a nerve biopsy next neurologist appointment.

I'm 41. First symptoms recorded mid-late 30s.

Jon

my full body sfn started about the age of 35 after my second child, no pain at first, just funny feelings in feet, and when abroad in hot weather, got a raindrop feeling all over my body. Pain only started when neuro suggested it was SFN, when I read all the horror stories the panic set in, then the pain began! Panic is defo played a role in the pain! I have calmed down now and so has the pain!:)

De-stressing is a key component to pain reduction. This is very difficult at first when the fear and pain are overwhelming. I know that I really was scared at first and stressed majorly. The pain then was intense and new.

Then I remembered my past effects with relaxation training. Due to the fact that I had "muscle memory" of that training I was able to relax deeply within just a day or two. The payoff was a dramatic reduction in pain. Now I've combined that with a strict diet (vegan). My blood sugar today at 2 hours after a meal was 93. In the past it was pushing 140+.

That and topical creams are a mainstay for pain reduction. They have surely worked. I'm not saying there is no pain or fear but they have been moved from terrifying and overwhelming to workable, (for now). With this disease I make no claims about the future.

Started at 30, I am now 31.

Me: 42-45.

Mine started at 32 years old and I'm now 51...so a long 19 years of PN and AN.

im not in either of those range, im younger than most of you here, but the experience is pretty much shocking.

Well Hopeless, then you are the one we shall look for wisdom since we don't have that yet:D

How did yours start? Was the cause ever found?

I will be 69 soon.... but mine started when I was about 30 or so, and worsened during my pregnancy...due to hypothyroidism not properly diagnosed at the time. After medication in my 40's my PN reversed in my feet, except for a bit of numbness in two toe tips. I can still get flares in my hands and have to wear my wrist braces if I overdo my hand use. I cannot hand sew with a needle for over 10 minutes. I had to give up crochet when I was pregnant.
But I don't have symptoms in my hands on a daily basis anymore.

My PN today is relatively stable. Severe low pressure weather will flare pain for me, but I have escaped progression. My arthritis/lupus now is much more problematic for me. And I am prediabetic like many here now. :(

Hi mrsD,

So glad to see that I was not the only one in the 60's category brave enough to respond to this thread which was directed to a younger audience. :)

Thanks for not leaving me alone in this thread of younger people.

Sad to see that so many are afflicted at such an early age and that most of us older ones have been dealing with PN for so many decades.

Hoping everyone with any type of PN will have better days in their future.

Hi Healthgirl,

You are so sweet to mention wisdom BUT, I only said I was OLD, not wise. :)

With age comes wisdom. (Not for everyone.) :D I may have missed that boat.

There is a lot of learning that can be had from those younger than oneself, too.

Hi Healthgirl,

Sorry I forgot to answer your question in my first reply to you.

The general consensus is nerve damage occurred during a surgical procedure in 1977 and then just continued to worsen with time.

Since then, other nerves have been affected but from other reasons.

What nerves were damaged?

I had some minor symptoms at about 15 while playing soccer and when standing for long period. Pain became constant while standing at age 33, now 13 years ago. Pain in back of legs and buttocks started maybe 5 years after that. It sucks.

Eat a healthy diet, lots of veggies and fruits, exercise, stretch, meditate or something to help with stress. There are all sorts of meditations on youtube. Smoothies are a great way to get in health foods. A blender breaks many more of the cell walls than just chewing does, anyway chewing gets tiresome. For example you can drink a whole carton of blueberries in a few minutes. There are lots of frozen fruits in packages at the store. I know you didn't ask, but I feel obligated to say these things because I think this would help most people a great deal. Look up Drs T. Colin Campbell, McDougall, Ornish, Fuhrman, Barnard.
Ron

If anyone new has been diagnosed with idiopathic polyneuropathy or SFN, feel free to join this thread with your story.
For those of us already here, how are your symptoms lately?

I have some improvement and haven't relapsed to my debilitated state. I can manage most days and can say that I am "ok", just ok though, not fixed. I still have the neuropathy through out my body, but have found ways to manage the symptoms and only use medications only for when it is very bad. I'm still looking for an answer and believe that my nerve damage came from something toxic.

Thanks for resurrecting this thread. My story is here, if anyone wants to read about it, which reminds me that I need to respond: http://neurotalk.psychcentral.com/thread229734.html

Mine started in my mid-30s, but thinking back as I say it must have started in my early 30s. Still trying to find the cause, since it just exploded onto the scene several months ago. Autoimmune is suspected. Mine is all over my body too and pure SFN.

45. Onset of symptoms at 42.

30. Initially felt like my life was over, but I'm able to manage my symptoms a little bit better over time. It's been about a year.

45. Onset of symptoms at 43.

I started having problems with a right toe when I was 24 then various other areas, left shoulder, neck, both shoulders, arms and pins and needles in my hands. Proceeded to start affecting my stomach more but didn't k ow it was related.

Couple of years ago my feet and legs started to ha e issues with pins and needles. Like ants crawling up and down my legs. But ing sensations on my shoulder, legs or back of arms. This all lead to gait problems and using a cane for a year due to drop attacks.

I'm 41 now. 4 neurologists later finally found out I have small fiber polyneuropathy. Been on medications for 4 months ago. I'm doing a little better. I'm starting to have a life again but the flare ups are just difficult to deal with.

Found this website when I was at a big low. Many of you have provided me with great I formation and I hope to share more about my symptoms.

Thanks!
BK

Sent from my XT1254 using Tapatalk

41 as stated on page one. Since then I have had that plugged into an electrical source feeling in my limbs daily to carying voltages. It is bearable and I still feel in the scheme of things it falls more into discomfort than pain, though that exists too. Tramadol and topamax keep the shooting pain down as long as I do not overexert myself.

I am not as dilligent as some on diet, though I do eat vegan. I will suffer the side effects of the odd bagel because they are delicious. I am sure that had I not adjusted my diet and dedicated myself to exercising to tolerance (which has changed over time, lessened a lot in the last year actually) stretching, eating better that between pn and shingles this year I would have been in the hospital, out on comp or both.

I am a diabetic, though glucose is currently well controlled, though my symptoms are not. Stress reduction has been a nice boon to sleep and overall well being.

For anyone who is new to dealing with this I understand it is easier said than done, but try to adjust your diet, even in small ways. Cut your carb intake in half. Start somewhere.

Jon

mine started at 44. im 58 now.

I started when I was 37. I just turned 40 last week.

And I was 43--
 

which was twelve and a half years ago. Of course, mine was one of the most acute onsets ever seen (akin, as I've said, to a small-fiber sensory Guillain Barre attack).

I was 42 when it all started
Anyone else had low white cell count/ low red cell count/ iron deficiency anaemia found as a by product of testing?
My whit cell count is just 2, my hbg has climbed to 10.
Is it just me?

Mine started over a year ago with subtle feelings such as tightness and tingling. Noticed skin looking different and legs getting slimmer before the real pain came on. This was Christmas last year, I recall crying my eyes out all over Christmas due to the pain in the entirety of my thighs and buttocks. I was in agony before starting gabapentin - which did provide relief.
I am now 36 so 35 when this started. Most days I really do wish that I was in my 60's. My mum is fitter and more energetic than I am. I hate the thought of many many more years of this and worse.
I'm struggling to deal with the uncertainty of what's happening alot at the moment and pain has moved to every imaginable place on my body hence the depressing tone of my message! I do get days where it isn't so bad.

I became ill when I was 45. It came on very fast, within 6 weeks I had gone from a fit healthy person to a fairly seriously disabled person. Everything in my life vanished. Work, study, ability to walk and drive. Was in very severe pain all over. I have an undiagnosed neurological disorder that emerged at the same time. I'm 48 now.

I'm 46 and waiting for IViG Treatment to get my diagnosis of MMN. My Doctor told me I first saw him with symptoms 10 years ago starting with tingling fingers and numbness. It wasn't until i noticed muscle wastage in my right hand at the thumb that he sent me back to the neurologist for NCS, EMG, MRI and finally a Lumbar puncture in January of this year. I was sent to Melbourne for a 2nd opinion to find the strength in my right hand was slowly getting worse so both specialists recommended IViG Treatment.

I fear mine has progressed to far for a good recovery now.

I got this when i was end 45 or 46 years old i am now 52 and have this 7 years

I was 46 when the symptoms first started and I am now 47. I went from being in nursing school, in my last semester walking and taking care of patients and now I walk with a walker & cannot feel my legs from just below my knees down. Mine has been fast progressing but I pray we can slow it down.