[Cliffman]

Hi Everyone,

My small fiber biopsy test came back positive last week yet my Neurologist assured me that many people that have SFN lead normal lives. From everything I have read here and other places that does not seem to be true. First off It does not seem that the med's I have read about offer enough pain relief to allow one to consider their life “normal” or even functional. In addition I have read the meds stop working after a while and/or getting off of them is a nightmare? Am I being too negative? If so please let me know.......

Having only had this for the last 3 month's I'm pretty scared.

Thank you in advance for your input.......

Cliffman

[Patrick Winter]

Originally Posted by Cliffman

Hi Everyone,

My small fiber biopsy test came back positive last week yet my Neurologist assured me that many people that have SFN lead normal lives. From everything I have read here and other places that does not seem to be true. First off It does not seem that the med's I have read about offer enough pain relief to allow one to consider their life “normal” or even functional. In addition I have read the meds stop working after a while and/or getting off of them is a nightmare? Am I being too negative? If so please let me know.......

Having only had this for the last 3 month's I'm pretty scared.

Thank you in advance for your input.......

Cliffman

I would say "normal' isn't applicable. You do adjust to it, it just becomes your daily burden and we all have burdens. Although i would sooner have compound fractures in both my legs and the reality of knowing that I just need time and i WILL HEAL. As opposed to knowing that this weird disease likely will never heal. Hard to feel normal knowing that. For some people it progresses into worse symptoms which really takes the "normal" out of the equation. And has you living in a constant state of fear. If it doesn't progress it may be closer to normalcy for some.

I have had this for probably 2 years and it really has been full blast for a year. Have you found any relief via medication or supplementation (or both). in my case a combination of both is what is allowing me to function at this point. Although i am never 100 percent. my best days are about 60% of the real me. Doctors say, "well, that's good, better than 30%".

[zkrp01]

Originally Posted by Cliffman

Hi Everyone,

My small fiber biopsy test came back positive last week yet my Neurologist assured me that many people that have SFN lead normal lives. From everything I have read here and other places that does not seem to be true. First off It does not seem that the med's I have read about offer enough pain relief to allow one to consider their life “normal” or even functional. In addition I have read the meds stop working after a while and/or getting off of them is a nightmare? Am I being too negative? If so please let me know.......

Having only had this for the last 3 month's I'm pretty scared.

Thank you in advance for your input.......

Cliffman

Many things in life make us reset to a new normal. When one of these things happen there is a time of grief and loss while at the same time there is evolution toward the "new" normal. I will never be the same as I was but I am almost to the point where I can stop grieving about it. Yesterday I dropped a plate of food as it was being handed to me in a cafeteria. It fell a couple of inches and did not spill so I grabbed it again and said"something shocked me" and went on as if it were "normal". The same evolution will occur with your pain threshold. Perhaps as time passes your pain tolerance will increase as your meds effectiveness decreases. I have quit Gaba and Hydro and currently have Tylenol with codeine that I only use for road trips. You know that all cases are individual and there are very few hard and fast rules so be patient and yes-thankful- and you will settle into what will be your new normal. May it be with little fear and grief. Good Luck, Ken in Texas.

[Ragtop262]

Cliffman:

I do believe that many people with SFN lead "normal" lives - but that doesn't mean that they are pain free, or that they are the same as they were before the disease.

One other thing that you need to remember as you read the posts here on this forum: The posters here are but a very tiny cross section of the millions of people world wide who have some type of PN. And, I suspect that most of the people who only have mild cases and are leading relatively normal lives aren't posting here. Neither are the ones who had PN due to treatable causes and have since been treated, healed up and returned to their former lives. Although I have no statistics to back it up, I think the posters here tend to be the ones that have the moderate to severe chronic conditions - not the mild cases.

I think someone once said: "Life with PN is like a box of really stale chocolates - they're all pretty bad, but some taste worse than others."

But seriously, it's really important to maintain a positive outlook. It will help you both physically and mentally to do so. Make sure you do as many of the things that "normal" people do as you can. That will keep you engaged with others, and engaged in your own life. (In my opinion, that's what normal life is.)

[ElaineD]

Hi Cliffman,

I have SFN. The only thing it does is 'be uncomfortable'. It doesn't hinder movement or disable me in any way.

It was a rather late diagnosis, developing over the past two years, and finally treated with 3600 mg gabapentin. That is because it caused the sensation of needles sticking into the end of my fingers. It hurt!

So I'm a bit slowed down by the gabapentin, but the pain, itching burning, tingling and numbness (arms, hands, fingers, face, lips and tongue) are better. I still have some tingling and numbness but the stabbing pains are gone.

I have profound PN in my lower legs and feet, two nerves non responsive and the third severely damaged

So perhaps my SFN would bother my legs and feet too? I don't know.

The worst is that I just keep getting NEW things diagnosed. I keep wondering what next?

But SFN is just an annoyance as far as I know.

Now it may come with a bunch of other stuff which are coincidental but not causally related.

Hugs, ElaineD