Anyone having a rapid acceleration SFN? Help...
 

Hi all, I was diagnosed by a neurologist last month with small fiber neuropathy. My symptoms seem to be accelerating more quickly than I would have thought and it's scaring me. It started with numbness and some pain in my feet and low back last February and numbness is already traveling up both legs with severe pain in both feet and legs. My hands now hurt with some tingling and burning. One day I accidentally ran out of my gabapentin and I had a nightmare night of pain which included burning/ichting all over my scalp and face. So, as this all started last winter with some annoying numbness in my feet, it is now already affecting all my limbs and is traveling up my limbs it seems. I thought this disease was supposed to progess slowly over time? Also, I am on gabapentin 2400mg and tegetrol 600 mg. Both of these meds have helped enormously, but after a week or two at a new dose I seem to get used to it and they both need to be adjusted upward again? How is this going to end up? My neurologist can seem to answer this. Anyone else have what seems to be a rather rapid progression of SFN symptoms and drug tolerance? Thank you...:confused:

Hi mountaingirl I'm sorry I can't answers this but I am the same. I'm just diagnosed in this month and my symptoms have been feet, legs, groin, hands and back. I've started at 75mg Lyrica and still increasing it now to 300mg. My pain is worse when sitting, I get up and my groin is terrible. Seeing my neurologist in 2 weeks hopefully she may help.

PHIL


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Welcome to the forum mountaingirl. I'm sorry your having such a rapid onset of symptoms.

Actually, I don't think there is a "normal progression" of SFN. Some have a slow progression of symptoms and others have a rapid onset. Among the stories I've read from people with rapid onset, it seems the progress often slows down or stops at some point. And in some cases even reverses.

So, don't get too discouraged - stress seems to be one of the factors that makes things worse. Do some reading on the forum to get a feel for what others are doing to control symptoms. The doctors are only one part of the treatment plan - you have to do some research and take things into your own hands to some extent.

Self-help options seem to fall into the major categories of diet, exercise, supplementation, and stress reduction. Most of these are aimed at providing the best possible conditions for your nerves to survive and repair any damage that has been done to them.

Hang in there, and don't be afraid to ask any questions you have - or even just "vent" if your having a bad day

I can tell you from my experience that my onset was slow and then very rapid. It started with heart palpitations, insomnia, digestive issues, orthostatic hypotension, vertigo..
My left foot and leg would go numb from sitting positions and my left hand had a vibrating feeling. This all lasted about a year and then suddenly last September, I started have shooting nerve pain from my neck to my arms and I couldn't move my neck. By November it spread to my legs and my whole body. The pain was excruciating, buzzing, vibrating, muscle spasms, tinnitus. I couldn't move or stay still I was a terrible mess.... and the autonomic symptoms became worse. So, I was like this for 4-5 months. I couldn't drive, or do anything. Could barely eat. By Jan/Feb I could drive short distances very carefully. I am now functioning, but it is hard. Some days are better than others. When I look back though- I'll take it.

It's great to see news of progressive healing. What do you think is making you better, Healthgirl?

And sorry to hear about your symptoms mountaingirl! Mine started last winter too and has progressed to (hopefully) it's peak this month. Aches and shocks, especially worse at night. What started on my right toe is now affecting all limbs and my face.

Here's hoping it goes away as it sneaked up on us.

Very good advice here. Stress/fear was a major cause of increase of pain for me. Once I seriously tackled this issue my pain reduced significantly. That and diet and topical creams etc. Now I've just started Gabapentin and it's working for me also. My pain symptoms went from terrifying to manageable for now at least.

Yes, I am hoping everyday. I am not better- but improved from my worst state. I can now have some happy moments in between the symptoms. I can't say what made me improve. It seemed to run a terrible course and I can only hope and pray that I won't go back to the state I was in. My body is fighting this and trying to fix the damage, but what ever is going on seems to reattack when things seem to be calming down and keeps me from getting better. I want to run around with my kids, but I have to move like an old lady because of the pain and autonomic stuff. I was very active a year ago and it makes me sad.
Still, I will not give up and know something has caused this. The hardest part of all of this is the mindset. It is very hard not to let it get you down. The right attitude is huge for coping. When I find myself feeling sad that I can't do the things I could do, I remind myself that I too many other blessings to count. Not easy sometimes, but important to take it one day at a time.

Good work, good attitude Healthgirl


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My neuro doc keeps telling me that she thinks I have something cardiovascular going on. I'm having ultrasounds on bot my legs in the morning. My feet are numb. I do not have pain, but I have burning, numbness, and tremors. Mountangirl.......mine has progressed fairly quickly, but I'm actually better than I was......I may be going to Mayo.