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Idiopathic small fiber peripheral polyneuropathy with complication.
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/?search=neuropathy+what+helps.
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/