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Idiopathic Small Fiber Neuropathy w/ levels of PFAS & PFOS
I’ve had a number of tests & no real answers other then the skin punch biopsy coming back positive with very low to no small fibers left. I have 2 viruses which lay dormant & tested off the chart at high levels; they are: Epstein Barr & CMV. Which all my Drs have said these viruses wouldn’t have caused this. Then in 2020 I was part of a research group testing for PFAS & PFOS after learning we were drinking contaminated water & the water company wasn’t cleaning it & to this day they still haven’t put a filtration system at the base; we had to put a POE filtration system on ourselves. The tests came back showing moderate levels of PFAS, & PFOS. Both my mother & I have same levels & unexplained painful neuropathy. My neighbor had a punch biopsy as well showing only one area having SFN but doesn’t have the on going pain & burning as much but also has a higher level of PFAS, PFOS as an airforce veteran & also working for DuPont for 15 years. The research has shown most people that have been exposed to even smallest traces of PFOS & PFAS is a neurotoxin & everyone had some form of neuropathy. My question is has anyone else had blood levels tested for contamination & have idiopathic neuropathy? The doctors in PA don’t know what to do or have any information other then prescribing gabapentin which doesn’t do anything for either of our situations. I’m a lot younger then my neighbor & my mother & have the worst damage which has left me no choice to be on disability because I can no longer work at my profession. I read that unless the underlying condition is found SFN will only get worse & this terrifies me. To think I will only get worse & the ending is cancer; which is the end result & half the people on our street have died or are now living with cancer. I just want a treatment that works & haven’t found any answers or had anything work. Mainly due to information that has only been released within the last couple years & drs don’t know what to even do about it. Can someone please help me I’ll go to whatever hospital or clinic has the most updated ongoing care with research. Nobody in PA has been able to help or go outside there prescription pad & this is not the answer, nor is it working.
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I'm at a loss for any real recommendations other than trying to be seen at one of the larger medical facilities that would be able to take on your present pain and suffering. I sincerely hope that you find a clinic or medical facility that will look closely at your medical history and be willing to take you on as a patient. I hope and pray that you will find comfort and peace.
Hello @edm11, I would like to add my welcome to Connect along with @mikead63 and others. I can't imagine the difficulty trying to deal with neurotoxicity caused by contaminated water in a public water system with no one taking accountability. I did find some very recent information that might be helpful using Google Scholar (https://scholar.google.com/) - https://scholar.google.com/scholar?as_ylo=2025&q=PFAS+%2BPFOS+neuropathy+treatment&hl=en&as_sdt=0,24.
Here are the first two articles listed in the search results:
-- Perfluoroalkyl and Polyfluoroalkyl Substances (PFAS) and Vitamin Metabolism: A Nutritional Perspective on an Emerging Environmental Health Issue: https://pmc.ncbi.nlm.nih.gov/articles/PMC12113770/
-- Sources and Pathways of PFAS Occurrence in Water Sources: Relative Contribution of Land-Applied Biosolids in an Agricultural Dominated Watershed: https://pubs.acs.org/doi/full/10.1021/acs.est.4c09490
There have been several members who have posted in other discussions regarding PFAS levels if you want to learn what they have shared - https://connect.mayoclinic.org/search/comments/?search=PFAS%20%20.
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1 ReactionThank you for this information. I think chemicals have become so pervasive with little regulation compared to other countries. We must demand that our water supply be safe as well as our air. I am having the same problem with my water quality, and despite demands that something be done it is not.
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1 ReactionI am so sorry to hear about your problems. I am also worried about levels in my water. Could you please tell me how you were tested? I will have to order test myself as I know doctor will not do it. I can't find lab that does it. I have small fiber neuropathy. Thanks
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I also have idiopathic small fiber neuropathy and it can be painful. My neurologists have said that there really isn’t any cure for SFN but treating symptoms and any known causes are the best options. If someone has diabetes, it is important to manage this. If someone drinks alcohol or smokes, it is important to stop.
Have you had extensive bloodwork to check for abnormalities/toxicities/vitamin deficiencies? You may want to work with a nutritionist/dietitian for a detox diet and supplements that support nerve health.
I take alpha Lipoic acid, Acetyl l carnitine, and magnesium supplements which have helped me. Nerve pain creams and patches have helped (lidocaine/capsaicin) and getting aerobic exercise (walking) will improve circulation and small nerve fiber regeneration. Compression socks and icing/cooling areas with neuropathic pain is helpful. Warmer climates cause tissues to expand which irritates small nerve fibers. Staying in cooler temperatures/air conditioning and cool showers/baths may also help.
It is really important to reduce toxin exposures and not smoke, vape, drink or do drugs.
1. https://my.clevelandclinic.org/health/diseases/neurotoxicity
2. https://kaplanclinic.com/condition/neurotoxicity/
3. https://my.clevelandclinic.org/health/diseases/17479-small-fiber-neuropathy
4. https://www.sciencedirect.com/science/article/pii/S1297319X17301914
5. https://www.health.harvard.edu/diseases-and-conditions/the-big-pain-of-small-fiber-neuropathy
6. https://www.foundationforpn.org/sfn-questions/
7. https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/small-fiber-neuropathy.html
8. https://ameripharmaspecialty.com/other-health-conditions/the-role-of-diet-and-nutrition-in-managing-small-fiber-neuropathy/
9. https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067
10. https://practicalneurology.com/diseases-diagnoses/headache-pain/small-fiber-neuropathy/31811/
I'm currently looking into ortholazer treatment, but all the clinics are in the eastern half of the USA. If you're in PA, you might check out a clinic and see if they can help with the pain. My friend who's being treated for arthritic pain in her shoulders and feet, swears by the treatment....noninvasive, quick, and it works;).