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.

Originally Posted by Spectrum

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...

Originally Posted by Spectrum

Hi,

I am new to this forum. I’m 46. My small fiber neuropathy symptoms began suddenly in April 2012. The symptoms started in my feet and then spread to almost my entire body within a 2-3 week period.
My current symptoms consist of pain, burning, pins & needles and tingling in my feet (wet, liquid, cold), calves, thighs, hands, arms, torso and sometimes face – essentially over most of my body. The surging of pain, tingling, pins & needles, etc is so bad it causes my thighs, torso and arms to shake. My symptoms appear to have worsened in the last few months and it is severely disrupting my life.
My sleep has also been significantly disrupted by the neuropathy and also by ongoing back issues, which are both worse at night.
I initially saw a neurologist at a renowned national center who thought my condition would resolve quickly given that it had come out of nowhere and progressed so rapidly. He thought it was some variation of Guillen-Barre that would likely fade out as quickly as it came, but that didn’t happen.
I’ve tried Neurontin, Nortryptyline, Tramadol, and Cymbalta and none have been helpful. I also did a 5- day course of IVIG which had no effect. My neurologist is now out of ideas, so I am now seeing a new one who seems to be aggressive in trying to address these issues. I had an initial appointment a few weeks ago and am going back next week to hear her recommendations. I’ve had the full battery of testing done by both doctors to search for a cause but none has been found. I’ve also had 2 skin biopsies which confirmed the diagnosis. I am taking alpha lipoic acid, acetyl L-Carnitine and other supplements like a multi-vitamin, Vitamin E, fish oil, C, and CQ-10.
Now that this hasn’t dissipated and appears to be getting worse, it has turned my life upside down. I’m not sure that I’m asking for any advice, but wanted to join the community and see if anyone has ideas. Thank you.

Originally Posted by heb1212

Hi, Spectrum and SFNgirl... can't see that my length post "posted." Did I attach to a PM somehow? Because I can't see the thread I responded to either?
Thanks

Originally Posted by Spectrum

I do see your post above. It sounds like you're in the same boat as us. It's truly unbelievable. It's very hard to have hope when you see no improvment and your doctors can't give you even a short or medium term prognosis. Mine were confident early on that all of this would dissipate, because of the way it came on so quickly. They thought it was probably the unfortunate result of some toxic reaction to platelet rich plasma and prolotherapy injections I was receiving for some back issues, and that it would likely resolve. Now it's about a year later, and symptoms haven't resolved and are probably worse. And as you referenced, it's a very cruel thing because you're going down two parallel tracks that no one else is aware of unless you tell them. On one track, your life has basically been ruined, and that's not an exaggeration. On the other track, you look relatively normal and have to try to act "normal" and continue on with business as usual while you're in agony every minute. That dichotomy is enough to drive you nuts, and I think at some point those two lines intersect and you have to leave your job, etc.

Originally Posted by Spectrum

Also, I don't know exactly what my biopsy reports said, just that they confirmed the diagnosis. I had 2 biopsies done about 4-5 months apart. I'd have to go back and look, but it probably won't make a lot of sense to me regardless.

Originally Posted by Spectrum

I do see your post above. It sounds like you're in the same boat as us. It's truly unbelievable. It's very hard to have hope when you see no improvment and your doctors can't give you even a short or medium term prognosis. Mine were confident early on that all of this would dissipate, because of the way it came on so quickly. They thought it was probably the unfortunate result of some toxic reaction to platelet rich plasma and prolotherapy injections I was receiving for some back issues, and that it would likely resolve. Now it's about a year later, and symptoms haven't resolved and are probably worse. And as you referenced, it's a very cruel thing because you're going down two parallel tracks that no one else is aware of unless you tell them. On one track, your life has basically been ruined, and that's not an exaggeration. On the other track, you look relatively normal and have to try to act "normal" and continue on with business as usual while you're in agony every minute. That dichotomy is enough to drive you nuts, and I think at some point those two lines intersect and you have to leave your job, etc.

Originally Posted by heb1212

Hi, again... You mentioned that you were receiving "platelet rich plasma". Did they run blood tests for all viruses that could possibly have been introduced via the blood therapy? Hep C, B and parvo virus b19? The virus I had shortly before my neuropathy started was parvo virus b19... though it is a very unusual manifestation of the virus. Usually, it's more extreme joint and muscle pain, though I have that, too. Yes, nerve, muscle and joint pain... I'm quite a mess. I mention it because it is a virus that can harbor in the bone marrow and does have something to do with blood platelets (though I'm not sure exactly what). I don't want to send you on a wild goose chase, but it is a thought. For a year my neuropathy was labeled "idiopathic" but I relentlessly brought up the parvo virus b19 and asked for retesting a year and a half later because I just had such a hard time accepting that the virus and the sudden onset of neuropathy couldn't be related. I also had severe gastrointestinal problems and sudden significant weight loss, so for a while a paraneoplastic syndrome was being considered and tested for.
I am taking gabapentin and have recently added 10 mg. nortriptyline... hate taking it all. It makes me feel like a zombie and really only takes the edge off the pain. But, otherwise, I'd be incapacitated and I need to participate in life still! Though, I've gone from a very positive, happy person... not without struggles, but certainly NOTHING like this... to just managing to "get through" the basic responsibilities that I have.
I'll be sure to check this site a little more often to get your updates and to share.