Has anyone been diagnosed with small fiber neuropathy?
I was first diagnosed with small fiber neuropathy with 2 leg biopsies. 2 years later, I was diagnosed with psoriatic arthritis. I started with symptoms in 2008. It took multiple doctors and my family doctor figured it out. It's been a rough 10 years. Luckily, my family doctor knew me well before I started with symptoms. I luckily only had one doctor tell me it was mental illness. I've heard of many people with invisible illnesses that are diagnosed with mental illness. I know I'm going on...
Has anyone been diagnosed with small fiber neuropathy?
Hi KJPORTER, I hope community members will begin to chime in with their experiences soon. I read that small fiber neuropathy is a form of peripheral neuropathy and that is commonly reported among folks with PsA. How are you coping today?
-Martha
Psoriatic-Arthritis.com TeamIt has taken me some time to connect with someone who has PsA and SFN, but so glad to "meet" you...
It took years to get the PsA diagnosis as my psoriasis is so mild. I saw many, many doctors who could not give me a diagnosis. Although I worried that I was imagining my illness, the doctors assured me that my symptoms were real. Three years after I started seeing an orthopedic surgeon, I was diagnosed with psoriasis by my dermatologist and the orthopedic hand surgeon had me see a rheumatologist. Since 2004, I have been on MTX with very good results. Ten years later, I was diagnosed with SFN by a neurologist and 8 years later, that is my biggest problem. I could not stomach the meds that were subscribed, but now I am on a light dose of Nortriptyline, which helps a little. For about 6 years, I also have had acupuncture with herbal medicine, which has helped at times when Western medicine such as gastrointologists could not help me. I also see other doctors for symptoms related to my diagnosis, including an optometrist who diagnosed eye surface inflammation, which is very painful but relieved almost immediately with ophthalmic suspension eyedrops.
As you can imagine, I could go on and on with this, but will end here just in case there is no response.Hi. I am sorry to hear about your sfn. I got the Coronavirus and it lit a flame to my neuropathy. I have peripheral and automatic neuropathy now with some automatic failure. I was started on IVIG Gammaguard 2 months ago. The regenerative pain is awful at times. I have to say I can't complain because I started feeling the bottom of my feet this week. I got in my granddaughters sand box and enjoyed feeling the sand on my feet. The doctor said it takes about 6 months to see complete improvement. I am happy. The IVIG is hard. I got meningitis after the 5 day start period and now I go every 3 weeks. Luckily my insurance is covering the IVIG. How are you doing? I saw a video and SFN is not well studied. I had leg pain starting at my feet and hand to elbow. It is hard to describe because it's not just numbness but can be excruciating pain at times. Also, not just pins and needles. My symptoms started in 2009 I think. In 2017 I had a biopsy near right ankle and near my right knee and finally had a diagnosis. (Instead of a mental illness)
It's hard when you look healthy on the outside to get the health care to take your pain seriously. It is true that you can get used to the pain over time. I am hopeful that the IVIG will help at least get me to my baseline. I am close to 50. I feel like I'm 35 in my mind but not in my body. I'm glad you emailed.kiporter, so sorry I missed your note 6 months ago. Will try to make up for it. To begin, I am 74 but 40 in my mind, lol. Sorry to hear about your Coronavirus. I have not had it although my immune system is wacky. The Methotrexate for the PsA suppresses my immune system while I try to build it up so I don't get endless respiratory illnesses which I am prone to. Oh, and I was recently diagnosed with Sjogren's.
I do empathize with your pain. The way I describe the pain of sfn is that it's like you walked into a bed of coals and if feels like your skin is peeling off. Then someone is pounding on your feet with a hammer relentlessly. That pain is the only pain that has ever kept me from sleeping. That said, we increased the Nortriptyline dosage two months ago and I have depended on acupuncture quite a bit (My problem is that in my state of Vermont, acupuncture is not covered by insurance unless you are a teacher or work for the government.). I have not had this pain in about 6 months except for maybe once or twice. The sfn is also in my hands
I am especially interested in hearing of your progress or even lack of progress. Again, sorry it took me so long to respond.
SusanSorry, only half of my reply showed. I am off to an appointment but will try to look it over later.
