Some SFN symptom questions
 

I have been dx with SFN. I have been on Neurotin for about 1.5-2 years, can't quite remember when I started. The doc recently added 100mg of Tramdol, but I upped it to 200mg and it basically has no effect, so I'm going back to 100mg until I see him again.

It seems that over the last 6 months, the pain and burning has really progressed to the point that my 3600mg a day on neurontin seems to do little. My butt burns after sitting for about 5 minutes. The burning and soreness is creeping up my arms 2-3 inches now. The pain is moving up my legs, especially on the sides and calf. I often get very bad leg cramps in my calves when stretching in bed. Even if I can get some of the burning to calm down with a few Vicadins (usually 2-4 of the 7.5/750mg pills), there is still major soreness, like someone has beaten amy hands/arms and feet/legs with a 2x4! Last night it seemed to get real bad as it hurt just to pick up my sons small cloth bag during his swim lessons with the strap running across my palm. On drying my hands last night after washing, it felt like I was drying the backs of my hands with sand paper. Shifting my truck tends to hurt the palms of my hands just with the pressure of moving the shifter. Pushing on the clutch with my foot hurts greatly. Walking hurts a great deal. I do have a high tolerance for pain, but this is beginning to drive me crazy. I still can feel the difference between hot and cold though.

How fast does SFN usually spread? Can the pain have days with varying highs and not-quite-as-highs in intensity? Does anyone have a solution for those of us who sit most of the day, for the burning butt problem?

I sit most of the day behind a computer (I'm a tax accountant).

When do you see that neuro again?
 

If it's not soon, it's worth your while to put in a call and explain how things are 'progressing' and share your concerns.
Small or large fibre neuropathies spread very differently in each of us. In some instances it can go fast [my case, once it really started], in most instances tho, it goes slowly.
Don't give up calling your doc's office until you get some sort of satisfactory answer...if things are changing rapidly and noticably in different 'feeling' ways, do get that point across and see if they can 'fit you in' for an appt. DO be very specific about which meds you are and aren't taking and the quantities .... with what is and is not working to boot.
As for the 'sitting' issue? I don't work, but I've found that getting up and just doing a short walk around the house helps immensely [tho not for long]. So plan your 'errands' accordingly?
Just don't panic yet. NOW it is not constructive to do so. See the doc and get more tests..... They are likely called for because either something is changing or something new is happening. Be patient but persistent and HOPEFUL! I'm crossing my fingers that you do see your doc soon! - j

Thanks dahlek, I did manage to get in to see my neuromuscular doc yesterday afternoon and explained the progression to him. He has ordered a series of blood test and I'm to see him again in 3 months. He changed my meds from 3600mg of Neurontin and 100mg of Tramadol to 2700mg of Lyrica and 40mg of OxyContin per day. Now I am just waiting for my insurance company to approve the prescriptions. Seems everytime I get a prescription, the insurance company needs "prior authorization!" But, I have too many pre-existing conditions and can't change my insurance company.

The problem sitting is that when I sit, I burn; and when I stand or walk, my feet burn! Kind of damned if I do and damned if I don't! lol I sleep on my side already cause of my gastroparesis, so thats better at night.

We'll see how the bloodwork comes out.