[QUOTE=Healthgirl;1114084]Any insight, personal stories, recommendations, would be appreciated.
I have been recently diagnosed with idiopathic small fiber neuropathy. A year ago I started having heart palpitations and strange buzzing surges that would happen in my upper torso to head just as I was about to fall asleep at night. The only other symptoms were orthostatic hypotension and foot and hand tingling and numbness from certain positions that would go away with moving around. I went and had my blood work done and everything checked out ok. Life was manageable so I just continued on. Over this summer I wasn't able to keep up with my interval strength training routine and was losing range of motion in my neck and shoulders. Shooting pains were happening from my shoulders to my hands randomly day and night. I thought it was due to my weight lifting so I decided to ease up on it and take some time off and switch to light aerobics. It continued to get worse but still wasn't that big of a deal until I woke up one morning in September and could not move my neck. My traps were in severe spasms. Since that day, my body has been ravaged. My arms and shoulders just hurt and fatigue from even folding a towel. Throughout the past four months I have been unable to much that requires my arms because of my neck and shoulders. I now have random shooting and pulsing pains everywhere and muscle twitches all over my body, buzzing feelings in my upper body and down left arm into hand. The low blood pressure has become worse. Some days are worse than others. Is there anyone out there with a similar story? I think the doctor is missing something and could care less what the cause is. I also have a high ANA and have been to a rheumatologist who doesn't know.

Hi Healthgirl,
I'm sorry to hear your going through so much suffering. I was also dx with I-small fiber neuropathy. Your symptoms started a little different then mine, which started back in 3/2011. I was also active and ate healthy. Out of the blue I was getting pins and needles in both calves and burning under my feet. I also had tons of tests (bloodwork, MRIS-Brain & spine, EMG/NCS, more bloodwork) that all checked out good. My SFN was dx by a punch skin Biopsy done by a Neuro/muscular Neurologist. It has since progressed to my arms and hands, torso, scalp, face,mouth...I have it widespread. I had/have every symptom of sfn. (tingling, buzzing, stabbing, lancing, sensitive hands, burning feet, hot-spots all over my body, etc) My shooting pain is in my legs and feet. I also get the "surges of buzzing in my upper body" like you do. Its so bad I can hear it in my ears and head. ( I never had tinnitus before this happen to me)!
I do not have orthostatic hypotension, or any other autonomic symptoms, (except for occasional over-heated feelings when I feel the burning I get up and down my legs). How low does your blood pressure get? How did you get your sfn diagnosis? Did your Doctor/Neurologist send you for a Skin Biopsy? I feel for you. I know how debilitating the pain and symptoms of this dreaded disease can get. Are you taking any medication(s)? I take 350 mgs Lyrica, Tramadol for break-thru pain, (which don't help) and Klonopin for anxiety caused by the pain. I tried all the B Vitamins, supplements, nothing worked for me, but it doesn't mean they can't help you. My life has not been the same since this started. And yes, some days are much worse then others. I would like to talk to you privately about your tingling and buzzing if that's ok? The "surges of buzzing" and burning are my worst two problems now. I feel like my Doctor(s) are missing something and just don't care anymore. I'm still searching for a "cause". I still can not except Idiopathic! Take care..
Marie