Originally Posted by SFNgirl

Hi spectrum, you are not alone, and I'm sorry you too are dealing with this. My SFN came out of the blue last October. Started w low back pain I assumed from running, but very quickly took over my body with freezing burning pain in feet, legs, torso, hands, etc. some numbness and shaking in my hands and fingers. Electric like jolts through my legs. Etc. i even had a trigeminal type attack in my face. I i have a great primary doctor and a neurologist, but we have reached the end of testing that the neuro can do to try to find a cause, with no luck. I was diagnosed through skin biopsy and autonomic testing, it has also created a bunch of issues w my sweat function, giestion and blood pressure swings with postural movements. I honestly cannot believe this has happened. I am 43, hardly ever even sick, in good shape, full time job and 2 kids. I have needed to start working from home and in a client service business may not even be feasible for long. Everything in my life has been turned upside down. The pain is just unbearable at times, and just today, I had tingling and electric like currents in my scalp, which is new. It is particularly unsettling because it means it is still progressing with new symptoms. I guess I don't have any great success story for you, but thought I'd at least answer your note as to whether anyone on here has this non length dependent variety of SFN.

There are some great links regarding this type of sfn, and work that is being done around it. Glentaj, mrs D and others have posted various links to helpful articles. I think you can search non-length dependent sfn on this forum search and hopefully come up w some of the threads. Or search dorsal root ganglia and you will get some good thrads. I'll write in a bit some of the things I have tried, and a few little things that at least make me feel a little better at times. I have an appt at johns Hopkins just to see if a different doc w a different perspective may be able to figure something out. But it's not until oct!

I hate reading about your pain, it's so unfair and as I read, I realize it sounds so similar to what I am going through. Good luck and keep fighting, it's still so worthwhile and need to find ways to enjoy life beyond this awful thing! I just keep reminding myself of all the things I feel lucky for and that are great in my life, and focus on those things. It doesn't always work, but I need to keep trying.