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Bucklandbury:

--- Quote from: CircularNatural on October 13, 2021, 03:28:36 pm ---Sorry to hear about your neuropathy. Is there anything you're doing that helps? Have you tried duloxetine / pregabalin ?

--- End quote ---

So I have researched this one before. Maybe newer studies shows benefit? I am disinclined to try it.

https://pubmed.ncbi.nlm.nih.gov/20124207/


--- Quote ---Classification of evidence: This Class II trial showed that pregabalin is not more effective than placebo in treatment of painful HIV neuropathy.
--- End quote ---

Seems like I have read similar things for duloxetine - "Cymbalta" here in the U.S. - but I cannot now find that study. I cringe when I see the side effects:

https://www.drugs.com/sfx/cymbalta-side-effects.html
https://www.reddit.com/r/cymbalta/

And, yes, I know the manufacturer has to list all possible side effects.

Nonetheless, thank you for the suggestions! I will see what my PCP wants to do.

If she wants a skin punch, I am going to laugh at her since she wasted my time with the neurology consult who only did half the EMG test to determine I did not have large-fiber neuropathy. I knew that going in! Sadly, seeing that neurologist was a total waste of time and money. I didn't need to rule out what I knew going in. (Horses not zebras.)

CircularNatural:
I have read the thread more thoroughly and have a few comments.

To Bucklandbury:
I believe that things will get better with time with you, as Jim Allen and the rest well said. You are recently diagnosed and are probably panicking (like I am doing since I also got my dx just a few months ago). Anxiety is known to amplify feelings and sensations, it's also normal to feel hyper-aroused and over-attentive to your body for now. I'm sure that as you go through this rough first part of your treatment, it will get better, especially once you don't need any of the prophylactic antibiotics and extra medications.

Have you read or tried accupuncture? It might help with pain issues.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5359694/

Also, you might want to read about capsaicin creams. These have spicy red pepper extract (capsaicin is the molecule which provokes the heat reaction to this kind of spicy spices), and they are also used topically to help with paresthesia and such.
https://www.webmd.com/pain-management/what-is-capsaicin

In my case, I'm finding help with pregabalin at 150mg/day (2 capsules separated by 12 hours) mostly for generalized anxiety disorder and health anxiety (I suffered from these before and they have evidently worsened after the dx). In the US, pregabalin is not approved for anxiety issues, but you could probably get a prescription for other related issues such as chronic pain / neuropathy / fibromyalgia which are valid indications.
Pregabalin is thought to act by blocking calcium channels that are related to various neurotransmission routes, diminishing their hyper-activation / overstimulation / by raising GABA (the inhibitory neurotransmitter by excellence).
In normal doses, it is not known to cause any serious side effects, maybe a little sedation or light dizziness which is dose-related. In my case, I can feel myself a little bit hazy right after I take the pill, but it also alleviates my nervousness / slight panicky feeling, so it's desirable up to some point.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7174704/

Hope things turn out better in a few months from here (I'm sure it will!)
Take much care and try to take it easy for a while, maximizing relaxation activities and anything that might improve your well-being for now, "one day at a time".

Big hugs!

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