It's been almost a year now since the very rapid onset of these symptoms, and there's been no improvement. In fact, symptoms are as bad as they've ever been. Since my last post I've done 4 rounds of IV steriod infusions and tried various medications. I have underlying back problems but can't do even gentle PT for those issues because it makes the small fiber neuropathy go completely haywire, in a way that is completely and amazingly out of proportion to the gentle stretching being attempted by me and/or the physical therapist. It's really unfathomable. I saw a highly acclaimed neurologist in the midwest who told me 4 months ago that in about a year I'd know where I'll be symptom-wise for the rest of my life. With 8 months to go until that timeline expires, I have very intense body-wide SFN that shows no signs of any change. This is very difficult because I can't do normal things. It has basically ruined everything. Here's a very small example: I sat outside for a few minutes on Sunday, sitting in the direct sunlight with jeans and a shirt on. After a few minutes I had to go inside because the heat from the sun was causing the symptoms in my thighs and arms to worsen. How strange and crazy is that? And it was just an early spring late afternoon, not even particularly warm or overly sunny. As far as the docs are concerned, they're basically out of ideas for me. One is still trying to help me, but she doesn't really know what to suggest at this point. So what do you do when your doctors move on? Are you just on your own with this condition?

I am so sorry you feel bad. I really hope you will at least try this kind of doc. I mentioned before. I don't think she would ever give up on me, no matter what my pain or problem was. She is a physiatrist. The deal with pain first, then treat the whole person at a cellular level. If your current doctors have given up, there is always hope. It took me many tries before I found a complete team that actually talks with each other. each specialist, gives the records and notes to the other physician. I sure hope you can find a team that will help you so you can enjoy life a bit more. I will keep you in my thoughts and prayers. ginnie

Thanks Ginnie. One of the docs I've been seeing, in addition to neurologists, is a pain management expert/physiatrist at a major center in the DC area. He has no other ideas for me, so I guess I'll have to find someone else. I wonder if there are others on NeuroTalk who, for lack of a better way to put it, "have what I have." This kind of non-length dependent SFN is apparently extremely rare, and I haven't really found anyone with whom to compare notes. Certainly not in my everyday life. In fact, I might be one of a handful of people at most with this condition in a major metropolitan area of 3 million plus people. Crazy...

Yes, move on and find another. I actually interviewed 4 pain specialists. Brought my records, a friend, pain chart, all of it. (They doc.s thought they were interviewing me....wrong....) I really did see all four of them before I decided. It was the last doctor I saw, that right then and there I asked her if she would help me.
I was due for surgery. The surgeon would NOT cover after surgery pain, , and my pain speciaist at the time would not do it either. Well...what is the patient suppose to do??????? I wound up not having surgery at all, and it was the right choice. Then I got busy and found this physiatrist. I was dejected, and scared at the time too. All I know is I got angry and really started to look hard for someone who would listen to me. Unrelenting pain can drive a person nuts. It is so important to have that team and doctor to rely on. Please continue and search for someone. Maybe even post again, where you are located. Someone on NT, may have a good pain specialist in your neck of the woods. I do care, and I remember the pain I was in too. I also found NT, because I was searching for answers. I just never left. too many good people here. I will keep you in my thoughts and prayers. Don't give up....ginnie

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.

Thanks so much for responding and describing your experience. Would love to compare notes. One of the hardest things is that someone with all this looks almost completely ok, while underneath things have gone so terribly wrong. So you're on two parallel tracks. On one, your life has been turned completely upside down. On the other, you look fine and you're trying to stay at your job and act normally around others when you're in extreme, unrelenting discomfort that no one else can see, let alone understand. So it's like a particularly cruel form of invisible torture that you deal with alone.

That is so well put. It is one of my biggest challenges. I seriously considered circulating a description of SFN around my office, so people would see that's it is real and the symptoms, though crazy, are real. everyone says I look great, no external indication, except for the fact that I can barely wear shoes and almost always have wool socks on because i find that the air actually hurts my ankles.

I also did the steroid infusions with no success, so it seems we may have tried all the same things. Warm weather has been the one bright spot for me. I went to Mexico w my family for spring break, and I felt much better, not sure if there is any medical reason for it.

Can I send you a PM so we can discuss more? (If I can figure out how to do that on here :-)). Glad you were able to get away and have a little fun.

Spectrum and Ginnie...
Thank God for this website, right? Otherwise, we'd be even more alone. Of all the crazy, unthinkables to happen. It did to me, too. Two lines from your posts struck me: "I honestly can't believe this has happened" and "Unfathonable pain." And because you otherwise look "normal", no one understands that your "normal" is a mask hiding unmerciful pain. How could anyone understand this? So many times when I've dared to open up and share with someone that my whole body burns, I get this look like, really? Your whole body? Hmmm, that sounds awful. Yeah, it's really awful... and, really, truly, honestly, it's my whole body. I'm not crazy! My story began with my waking
one night with my feet and calves buzzing, tingling. In the weeks to follow, unusual paresthesias and burning pain engulfed my entire body, including my inner mouth, tongue, gums, throat, inner ears... crap, even my eyes have a burning sensation. I think you, Ginnie, referred to the electrical "zingers" in your scalp... thanks for sharing that because when it happens, it makes me feel like I'm having a stroke or something. All systems NORMAL on CNS testing though (thank goodness) but always leaves me wondering if yet something else is happening.
I wonder if any one or both of you could share the wording of your SFN biopsy results that diagnosed the non-length dependent neuropathy? Did it say anything about axonal swellings? Mine seemingly was triggered by a virus I had, but the doctors can't say for sure. I choke back tears all the time while clinging to the hope that, one day, I will be well again. Hope can be a scary thing when faced with such an unknown as this, I know... a fool's prayer or an expression of enormous faith. I choose enormous faith (most of the time). Please, let's try to stay Neurotalk buddies to encourage and just dump on.