future with sfpn
 

Hello everyone :)

So ive recently decided after lots and lots of 'perfectly healthy' tests, and thoughts of lyme and whatever else might be causing this, that i am back to the diagnosis of idiopathic non length dependent small fiber neuropathy.

What started in my fingertips and fingers in 2013 as burning skin pain from light touch has since moved into my left leg as mild cold paresthesia feelings in the toes up to the thigh and prickling underneath my foot when i walk - my right leg however, is not involved at all.

I used to think alcohol was a stressor for me but i now realise that it was just the poor sleep caused after alcohol consumption which causes the flares. Aside from a lack of sleep however (and also exercise) i cant find any other causes of symptom flaring for me e.g food intolerance, vitamin deficit.

So, now i am looking to the future and i want to ask those who have had sfn for longer than me how things panned out for you. Have your symptoms continued to get worse consistently? or did they plateau at some point, or maybe even improve?

The reason being is that ive just turned 31, and although my condition is reasonable now i understand that this is a slowly progressive condition with more pain the longer you have it. With the average western male life span being around 75 what state should i expect to be in 10/20/30/40 years from now, assuming im still around then?? :D

Thanks,

Jim

I was only recently diagnosed with SFPN a year and half ago. I have had your symptoms since 2001. But my doctor linked it to a problem with nerves on a tour back in 1998.

Anyway, it's had its ups and downs but i continue to push forward. It's not easy and I keep wondering how things will progress.

The best I can tell you is keep working with your doctor's. I'm 42 now and as I mentioned only recently diagnosed but I remember what it feels like to go through the testing and results you have.

Keep strong in your heart!!

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I have profound PN in my legs and feet and SFN in my scalp, face, lips, tongue, arms, hands and fingers.

It feels like a cage of stinging, burning, stabbing pain. I can't see beyond the cage, and the days just drag by.

However I take Gabapentin and the symptoms are completely gone. This works for me, but it may not work for everyone of course: Your mileage may vary, as we say.

My neuropathies are part of the damage done by my Immune System to my organs/systems, including my moisture glands, ears (moderate deafness), lungs, bladder, and of course the profound PN (I must walk 'badly' with braces) and SFN.

Ain't we got fun?

Hugs, Elaine

Hi Elaine,

How long did it take for the gabapentin to take effect? I started it 5 days ago for neuropathy/neuralgia but haven't noticed much improvement yet. I've read that it can take weeks to feel the effects.

Thanks.

Hi Jim,

I'm now three years into this adventure. When it first started, I was in agony for about 8 months. I think sheer terror over not knowing what was wrong with was contributing. Stress (or excitement) of any flavor causes an immediate flare.

My symptoms have morphed over the three years, but the horrendous nerve pain in my legs and feet I had initially doesn't plague me much any longer. I have other very bizarre sensations full body, and when I flare I burn very unpleasantly, but at least the nerve pain has faded.

I'd rather not live like this for the rest of my life, but given that I don't have much choice, I guess I will. It could be a lot worse. I have not gone the gabapentin route yet, so I can still play that card at any time.

Stick around here and learn the "tricks of the trade." People are really helpful.

Janie

Thanks everyone, it helps to know that its not always a downward spiral, especially when all the literature seems to only point that way!

It is hard to focus on life though when youre constantly worried about new symptoms appearing. I need to learn to distance myself from thinking about this stuff so much, i know it doesnt help to worry all the time...

Hi Jim,

I think the prognosis in the ideopathic cases is really unpredictable. After reading about a million articles, it seems that sometimes it get worse, sometimes it gets better, and sometimes stays the same. It does seem that a slow progressive onset seems to more likely end up with a continuing slow progression.

In my case, I had a fairly acute onset over 6 months - with twitching and cramping at first, then some feelings of weakness in the legs, and ultimately moving into a combination of numbness and then pain in my feet. But, over the two years since then, the symptoms have stabilized. The foot pain remains, but the other symptoms have mostly faded away. I do inspections at industrial facilities, so I'm on my feet a lot. I have kind of adjusted to the ongoing level of pain, and have found the best combinations of shoes and socks to minimize it. (I always buy nice thick/soft socks, and find that the typical white athletic socks are much more comfortable if I turn them inside out. Took a while to find safety shoes that didn't kill my feet - but eventually found some with a nice large toe box and memory foam insoles that allow me to work without too much discomfort.

I hope you are able to also find some ways to cope, and things that work for you. I was 52 when this came on, and can certainly understand that the younger you are, the scarier this can be.

Anyone with SFN should ask the doctor about amyloidosis. This can be inherited or can be due to problems in the bone marrow.

There is a new book for patients about neuropathy. It is called Peripheral Neuropathy - What It Is and What You Can Do To Feel Better. It talks about nerves and what neuropathy is and treatment of neuropathy and symptoms. I like the way it talks about what the doctr is thinking and why they do the exam and tests they do

I have sfn pain in every single part of my body including my face and teeth. And even now with mine having progressed so fast I have days where the pains hardly bothering me. The point in me telling you this is so you know that even if the pain progresses to a state of virtual destruction of small fibre nerves then for some reason the pain of that is not always consistently there. I often have days where I am absolutely fine pain wise. No never 100% but not crippled by pain. Trying to figure out what may flare things up would be helpful. I still don't really know but alcohol and syrup are problems for me and the sfn in my face gets real bad if I inhale toxic fumes from paint, bleaches, toxic cleaning products. Sometimes you won't ever know what flares it as it will change anyway between days. It won't be there burning and hurting like gell every waking moment even if it gets real bad basically.
Two years ago I had a biopsy of my skin and at that point I had significant loss of density so by now I'm sure there must be total degradation in places.(Mines come on fast and is not the same as yours in presentation - so not to worry you) .
Don't let the doctors fob you off is the best advice I can give you. Do your research before you see the consultants.Within reason of course as I understand so many of us have idiopathic. I still am no further in terms of cause myself

Hi Ragtop,

You brought up a very good point about shoes and socks. This was a huge issue for me. I too had to find thick socks... I have also had to move to shoes without laces. I need to because my feet are constantly either hurting or need air from my shoes. I find the ease of taking them on or off so much nicer!!

😀

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