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Just Diagnosed with Small Fiber Neuropathy
Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking " on fire ". My feet have similar issues. This is just one big Ick. Boo
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At work but sure - I have cryptogenic/idiopathic small fiber polyneuropathy (non-length-dependent) verified via skin punch biopsy. I have Cramp Fasciculation Syndrome and Erythromelalgia. I also have Grave's Disease (but post radioactive iodine treatment). I've had SFN for 11 years. 11 freaking burning years of pain. I feel like I am burning alive constantly. I've tried pretty much everything at this point in time. The only thing left is Ketamine. I'd like to try WST-057 by Win-San-Tor (which is essentially Pirenzepine in topical cream format at 4%) - but it is not available in the United States except via the FDA Expanded Drug Access Program. So if your doctor will fill out a form for you - you can get it - and it has been shown to reverse small fiber neuropathy. There is also ARA-290 which is called Cibenetide - a peptide that is injectable that has also been shown to reverse small fiber neuropathy. Araim Pharmaceuticals however was unable to secure the necessary FDA funding to bring that medication to market. Oh yeah - back to me - I have GERD, Ocular Rosacea, Fibromyalgia, and a few other things. Low Copper.....Low Ferritin....Low Vitamin D....despite supplementation. Gluten sensitivity - gluten free since 2015.
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1 ReactionInsurance did something similar to me. After my 4th month of bimonthly IVIG they cut it off of coverage as well as all the payments made to the hospital where infusions took place. Left be with a 250k bill
Unfortunately this treatment (IVIG) would have to continued indefinitely. That is my understanding. I think I would consider trying it if it was a cure, but it doesn't seem to work that way.
26 yo, Female. I was diagnosed with SFN through punch biopsy in the last year. My symptoms are non-typical for SFN - no burning pain, just extreme hypersensitivity sensitivity everywhere on my body to materials/fabrics. Materials that normal people aren't annoyed by feel like a scratching sensation on my skin that drives me crazy. Can't tolerate most clothing, and the seams on clothing are the WORST. The pain NEVER changes day-to-day, it just increases one level randomly each year. I'm barely able to wear any types of clothing anymore. I have ADHD, anxiety, exercise-induced asthma, acne, allergies, anemia, acid reflux, eustachian tube dysfunction, folliculitis, neuromas in both feet, and right now a lot of fatigue and high copper levels (likely unrelated to SFN though, working with a hepatologist to figure this out). Also take thyroid medication to tweak thyroid levels, even though they aren't out of range - since I'm only 26 just trying to get closer to what a normal 26 year old would have. Treating the anemia and hypothyroid and other conditions doesn't help the SFN at all. I've taken Lyrica, Vitamin B12 shots, Gabapentin, Abilify, Cymbalta, Trileptal, Clonidine, Desipramine, Naltrexone, Lamotrigine, Memantine, Mexiletine, Ketamine, Buprenorphine, Nortriptyline, Tizanidine, Tramadol, Lamictal, and had TMS (Transcranial Magnetic Stimulation) therapy. Starting to run out of meds to try. I'm ANA positive with RNP antibodies, have minor signs of Sjogrens but negative Sjogrens antibodies, high C50 but normal C3 and C4 complements, glucose at 90-100 usually, A1c at 5.6%, so borderline pre-diabetic but not enough for a diagnosis. Working with Stanford Autonomic Disorder program for some more antibody testing to see if we can find a cause. I'd really prefer not to run out of options and have to take opioids the rest of my life, but it's pretty terrifying to have the disease already in an extremely bad state when I'm only in my 20s. Any additional medication/treatment suggestions welcome. I would need a formal autoimmune diagnosis to get IVIG covered.
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1 ReactionHello @nlangmack, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. It sounds like you certainly have a lot going on. I only have numbness with my idiopathic small fiber neuropathy. I think that it's good that you are doing your own research to learn as much as you can about your health condition. One of my favorite search tools for medical research type information is Google Scholar (https://scholar.google.com/). Another good resource for neuropathy information is Neuropathy Commons (https://neuropathycommons.org/).
I found an article that discusses some of your symptoms of sensitive skin that sounds a lot like you describe.
"Tactile allodynia: This is pain caused by touch. This can include clothing pressing against the skin (especially the tighter parts of clothing, such as ..." -- Allodynia: A Rare, Distinct Type of Pain in Fibromyalgia and ME/CFS: https://www.verywellhealth.com/allodynia-definition-and-types-fibromyalgia-715929
There are a couple of discussions that could have some helpful information also based on the article above.
-- Allodynia: https://connect.mayoclinic.org/discussion/alloydinia/
-- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/
The second discussion has a link to a TED Talk by Jennifer Brea, that seems to relate to a lot of your symptoms so may be helpful -- What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
— https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
I know it must be terribly difficult for you. Are you able to share which of your symptoms is the worse?
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2 ReactionsThanks for the suggestions! Since it's been a 5-year path to diagnosis I'm pretty familiar with the disease, but continue to find it strange that I'm the only person I know of with skin sensitivity as the primary symptom (having looked at a lot of forums). The worst symptom is just sensitivity to clothing/seams. I also have a hypersensitivity to room temperatures (eg 73 is way too hot for me and I get nauseous), but the clothing thing is by far the worst because there's so few pieces of clothing left that I can wear. It sucks that there are truly no treatments for SFN - only pain management (which doesn't seem to be working for me). I'll definitely keep an eye on google scholar.
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2 ReactionsI found Connect when I was searching for answers because I was pretty disappointed with the treatment options or non options that I had available until I finally found some supplements that really do help. I was taking most of them after doing research on Google Scholar but didn't have a clue on amounts, best brands for quality, etc. until I found a Facebook group who put together a list so we could order them from Amazon. After a few years the groups leader cut a deal with a local pharmaceutical company to package the supplements into fewer pills which helped a lot.
I posted my story in the following discussion along with the supplements I take which have helped reduce and I think stop the progression of my neuropathy which I have had for over 20+ years. Other members with pain have been helped considerably and no long have to take meds to manage the pain.
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
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1 ReactionHello @nlangmack I too have similar symptoms as you and was diagnosed with idiopathic SFN. Other then the SFN I am in excellent health. My feet are extremely numb and at times painful and wearing clothing is the worse. I too tried many meds. I finally found a combination of Lyrica and nortriptyline work to give me some relieve. It took at least a month before I noticed any relief. Getting a good nights sleep also helps. Keep moving, walking, stretching, yoga and practice mindfulness. Stretching and keeping the circulation going brings relief. I start my day with a 45 minute routine and if I skip it, I notice an increase in the intensity. I also do one mid day for 15 minutes and 15 to 30 before bed. I am considering Ket - amine infusion treats. My neurologist feels it might give me a higher quality of life.
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4 Reactions@johnbishop, I watched the TED Talk last night and found it incredibly moving. I’ve been thinking about Ms. Brea a lot today, her strength and resolve to help others with ME and bring more awareness to this devastating illness. I think that the attention being paid to Covid long-haulers will reveal the need for greater research and provider training into ME and other autoimmune diseases.
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2 ReactionsHey Man, my name is Steve—I am 35 and have what they are calling “suspicious of SFN” so far everything looks normal regarding tests. My symptoms are not so bad yet but the is my second time having the feeling of needles in my skin. It’s rough. Also looking for answers and someone to talk to. I’m worried I’m going to be hit with the SFN idiopathic diagnosis—what’s the prognosis for that sort of thing?