Who Still Can Work with SFN?
 

I have seen a thread asking about who is on disability, but I am interested to know how many people have SFN and still work and maintain relatively normal lifestyles. I understand the need to connect with others who have been disabled and suffer similar situations to know you aren't alone. With that having been said, I must admit that the stories scare me and, therefore, I fear my future and have had a tremendous amount of anxiety lately which has been almost unbearable. Where are those of you who have neuopathy that isn't progressing or is, at least, progressing slowly enough to work and live a life where it hardly effects you?

Hi Coach,
 

I have had idiopathic SFN for 18 years and am still working and leading a normal life. Started with pain in hands and feet at age 40-didn't know what it was for years. Surprised when a rheumatologist labeled it as neuropathy a couple of years ago. Went to a neurologist who confirmed it was SFN via a skin biopsy. Had about $10.000 workup but SFN remained idiopathic. Over the years the distribution and pain has very slowly progressed up to knees and mid arm. It definitely waxes and wanes-my worst pain is in the fall when the weather changes. Had terrible pain for about a year around the time of Hurricane Sandy but this year the pain has been relatively mild. New symptoms include more numbness in feet which can sometimes alter my gait. In addition, I now sometimes get that awful whole body vibrating feeling. I also got very anxious during the year of pretty consistent pain but feel encouraged by the fact that this past year the pain was pretty mild. I do however, think about my neuropathy every day and wonder what the next 30 years may bring.
I am not taking any medication other than vitamin B, D and mag lotion. I know everyone is different but I hope this helps in some way.

It does help NYCGirl. $10,000 is a lot of money to find out that it is idiopathic, but I bet I have spent close to that as well. It is very scary to not understand what is happening. You can't help but wonder where it is going. I hope mine lets up a bit soon or I think I will lose my mind. It was a great let down to have my doctor tell me that he doesn't expect it to worsen and within days have it do just that. He said that most cases of idiopathic sfn reaches a plateau within the first two years. What have you been told as for the likely progress of this condition?

It's funny
 

but I was told very little. Since I live in nyc I was fortunate to have access to
one of the top peripheral neuropathy neurologists at cornell. He seemed skeptical in our visits that I had neuropathy. He shared the biopsy results with me over the phone a couple of weeks later and said "yup, you have sfn" I said, and...??? He said, we don't know what is causing it. I quickly realized that this was going to be a matter of symptom management. I was a little discouraged that he didn't have anything to offer. I also got a little down and scared reading this forum.
I have read that idiopathic neuropathy usually doesn't disable and doesn't progress to motor neuropathy. The most important thing is for me to manage the painful flares. Some things that have helped me are:[LIST=1][*]sharing with others-it has been a relief to tell my family, some friends and coworkers. it doesn't seem so bad when you tell others[*]exercising and eating well[*]I find working and socializing can distract from the pain[*]Thanks to Mrs. D, I got turned on to the Magnesium lotion which I feel helps. I keep a bottle in my office and at home.[*]I also know I will try medication when and if the pain gets too severe[*]I am hopeful that as the years go by there will be additional breakthroughs as to what causes this and treatment options

Hang in there coach.

I was misdiagnosed for 5 years before a specialist determined I had idiopathic peripheral neuropathy. It got progressively worse during those 5 years, to the point where I was in tears. I started walking with a cane when I was 28. I am now 38. While my pain is predominantly in my feet, I also experience it in my fingertips. I cannot open jars (or type longer than about 10 mins) without pain. I have to take medication to walk any longer than 15 minutes (IE grocery shopping)

I would say that it has ruined my life. I was very athletic, very active, walking to work almost every day and mtn biking. I have no pain unless I'm on my feet... but I'm unable to stand at the stove long enough to cook myself dinner.

However, I still work full time. I need to be FT for my benefits. Luckily I have an office job at a newspaper and sit 90% of the day. But it wears me out. I had to drastically change my lifestyle in order to deal with this. Being inactive and unable to stay strong and fit really takes its toll and I too worry very much about the future.

I have noticed two things that help. The biggest is staying off my feet. The longer I'm off them, the longer I can go when I walk again. After a three day vacation, even with medication, my feet burn and ache for days afterwards. The other is eating well. Avoiding processed foods and sugar seems to offer a mild improvement - but everything helps.

:Tip-Hat: Welcome marty75.

As you know, idiopathic simply means they do not know the cause.

For me, it's the meds. On them I'm incapable of functioning. Off them, I'm in terrible pain but I can keep working. My greatest fear is becoming a burden to the ones I love so I keep trying to push through. Unfortunately, I'm losing.

Thanks Kitt. And yes, I know. Which is what makes it so frustrating.

And nochance - I am the same. My brain literally does not work while on gabapentin or pregabalin which are the only 2 meds that offered me the tiniest hint of relief. I (sometimes unsuccessfully) try to deal with the pain without meds just so I can think and have normal conversations with the people around me.