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Originally Posted by CoachT
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?
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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.