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Can mold toxicity cause small fiber peripheral polyneuropathy?
I'm a formerly active, healthy 71 y/o female. Never smoked, drank, or did illicit drugs. Not diabetic or autoimmune. Was diagnosed last week with subclinical hypothyroidism, started on levothyroxine 25 mcg.
Total hysterectomy at 48 for possible adenomyosis and ovaries were removed at request of my GYN because she had "seen a lot of ovarian cancer recently."
Was placed on Xanax in 1991 for anxiety and insomnia, was then switched to klonopin in 1997, always taken as directed. No one ever mentioned the drug had a time limit. In late 2020, I heard Jordan Peterson video where he was discussing his recovery from stopping benzodiazepines and mentioned their affiliation with dementia and brain injury; he warned against them, especially over 2-4 weeks! I had taken them nearly 29 years.
I contacted my doctor telling her I wanted to stop them and how did I taper off? She said taper was not necessary, and I could "just stop." So I stopped that day and have never taken another since.
Withdrawal was a nightmare, the worst lasted about six months before any improvement at all. I'm retired, was sure I could just tough it out, but at times I felt I was dying, and wanted to die many times. Couldn't speak and make sense, couldn't think clearly. Vomiting, diarrhea, belly cramps, shaking, constant panic, hyperventilation and severe heart pounding, dizziness, brain twitching, couldnt swallow sometimes, ear ringing, couldnt be still, severe nightmares when I could sleep for a hour or so. Obviously I couldn't drive during this. My doctor's only reply to my portal messages was "call for an appointment. " when I could finally drive to see her six months later, I explained what had happened and she rolled her eyes at me and changed the subject. She seemed to think I was exaggerating, though I had no history of this in past. I'm autistic and ADHD and I'm pretty honest and straightforward.
I stopped seeing her.
Eventually my new PCP sent me to a neurologist who diagnosed "idiopathic small fiber peripheral polyneuropathy" and occipital neuralgia. Ulnar nerve entrapment. Pudendal neuralgia. Sharp burning stabbing in upper right buttock yet MRI of SI joints was negative.
I'm noticing severe quadriceps muscle wasting. General mild weakness. I've increased exercise to include rebounding a bit. I've restricted my diet to remove all sugar, flour and starches since discovering they worsen SFN symptoms and the IBS issue that has happened with SFN.
My meds are minimal use of gabapentin, sumatriptan, nabumetone, methylphenidate and now levothyroxine. Rx meds are worrisome to me since the benzo debacle.
What can I do to reduce/improve symptoms of this nerve disorder?
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Hello @logicalperson, Welcome to Connect. You ask an excellent question and as a fellow neuropathy club member with idiopathic small fiber peripheral neuropathy plus a few other health issues, I think you have started down a good path with more exercise and eating healthier along with removing sugar. There are quite a few discussions on Connect in the Neuropathy Support Group. Here is a list of the discussions and comments from members I found doing a search using "neuropathy what helps" - https://connect.mayoclinic.org/search/.
The Foundation for Peripheral Neuropathy also has a wealth of information for learning more about the condition and what helps - https://www.foundationforpn.org/living-well/.
Have you looked into any complementary or alternative therapies?
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1 ReactionYes. I have tried massage, acupuncture, chiropractic, myofascial release therapy, craniosacral therapy; these all felt wonderful and helped for maybe a day. I wear compression stockings when on my feet which allow me to be upright for about 2-3 hours before burning gets intolerable. My greatest help has been the many frozen ice bags I use on neck and pudendal area when lying down.
I also use ice in bed as needed on burning feet, burning shoulders and ulnar areas, burning spastic palms of hands which often occurs.
Capsaicin cream has helped in burning areas to offset the nerve burning, but I can't use this on pudendal area, of course. It's difficult to find a Capsaicin cream that is strong enough to make a difference.
The gabapentin does help a bit, depending on how much I allow myself to take. On horrible nights I will occasionally take 900 to 1800 mg. I hate taking prescription drugs.
I have a rough scratching long strap that I use when the deep itching happens, to calm down my skin.
My biggest help is realizing I can no longer eat at all at least three hours before sleeping. I have learned that all burning pain and "swelter" episodes of waking of sweating hot, burning and deep itching are reduced greatly by a no to low carb diet. Anything that spikes my blood sugar makes my burning and "swelter" episodes much worse. Anytime I eat anything sweet or anything made with flour, I will have rather horrendous BMs shortly after...sweating, burning all over, nauseating, cramping like I'm in labor BMs.
Once I learned this association, I stopped all foods with sugar, flour or starch. It's very restrictive for a former lover of cooking and baking, but has greatly reduced these episodes.
My entire life now revolves around keeping my symptoms as minimal and controlled as possible. I also avoid people who make me anxious since anxiety also kicks in symptoms.
Thank you for the link you provided for "help." I will check it out right away.
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1 ReactionI too started looking more seriously at my diet, carbs and intermittent fasting as a way to get healthier after reading Dr. Terry Wahls story and her book The Wahls Protocol - https://terrywahls.com/about/. You might find another discussion interesting if not helpful that's in the LCHF Living & Intermittent Fasting Group.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?
https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/
I'm having brain shunt surgery for NPH in a couple of weeks. Fun times!!
I was diagnosed with small fiber neuropathy about 4 yrs. ago, and prescribed Gagapentin- which I hate.
The weird symptom I'm having that is not related to the NPH is pain. I have pain almost all the time in my R leg where my symptoms started in 2014. This migrating pain I have has been a source of frustration of both me and my doctors.
T he plan right now is to get the shunt done, to help with my brain issues and my balance. Then address the pain issue. As my Neurosurgeon told me,' I think you have more than one issue going on'.
It's very frustrating as I have had issues since 2008 & no one has been able to figure it out. It was hell getting the NPH diagnosis. My siblings think I'm a hypochondriac. I'm a retired RN with 50 yrs. experience, which helps navigate visits and medical jargon, but otherwise causes more anxiety.
Any prayers would be appreciated for the shunt surgery on 8/13. I'm scared to death.
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1 ReactionI'm a 71 y/o autistic female. Have lived in an apartment for almost 12 years; have been sicker every year. Migraines, ENT, respiratory problems, heart irregularities, GI issues, urinary frequency, burning mouth syndrome. Finally diagnosed three years ago with "idiopathic" small fiber peripheral polyneuropathy.
So is the mold causing this? Recent testing showed three toxic strains of mold and I'm looking for another apartment.
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2 ReactionsI've seen my PCP, rheumatologist, immunologist/allergist, cardiologist, pulmonologist and neurologist. After ALL THIS, there is no allopathic testing that can prove or disprove if my symptoms are related to mold, though they highly suspect that is the case. Only functional medicine doctors (NOT covered by insurance) can test for mold.
Any ideas out there?
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1 ReactionJust a quick update-I had the shunt placed in august & it's been an interesting recovery. The shunt I have is adjustable (Certas-Codman) and they've adjusted the setting 4 times now. Started with 5, went up to 6, then turned it off completely. Balance & headaches REALLY escalated then. The setting right now is at 7. Still having headaches but wondering if there's another cause, rather than being shunt related.
I see a neurologist on Monday to discuss a small fiber neuropathy diagnosis I received after skin biopsies 3-4 years ago. I think there's overlap with the possible NPH diagnosis. My balance has improved after the shunt, but the headaches persist daily. Memory is slowly improving. So the search continues!
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1 Reaction@logicalperson A new potential cause for my worsening symptoms has come to light.
In September 2025, my apartment was discovered to have toxic mold, the source of which was above my bed in my bedroom ceiling, and later discovered around perimeter drywall of both bedroom windows when blinds were removed.
I've lived in this Arizona apartment since February 2014 before all my health problems started. Every summer during monsoon season rains, my ceiling above my bed would heavily leaked. I took videos, pictures, and sent all of them with texts to my property managers who, for 11 consecutive summers, promised to fix this but never investigated or fixed until the last time in September 2025. The mold problems were found and they demanded I move out instead of just fixing the problem. I was "released from my lease" and they did nothing else
...I now live in another apartment, still trying to slowly unbox everything as I'm so tired. Tonight (it's about 4 a.m. now) i have once again awakened with burning, deep itching and aching. Will this ever improve?
Could the toxic mold have caused all this?
@logicalperson You might want to scan through the other discussions on mold toxicity. Here's a search of Connect listing the related discussions - https://connect.mayoclinic.org/search/discussions/