Large-fiber neuropathy: Your prescrition meds & supplements?

Posted by Ray Kemble @ray666, Feb 7 12:44pm

Mine – to the best of my understanding – is idiopathic large-fiber PN. Large fiber – again, to the best of my understanding – often (but not always) means balance problems but no or minimal pain. I suspect that those of us with large-fiber PN are in the minority. I'm curious: for others with large-fiber neuropathy, what prescription meds and/or supplements are you taking, and for how long have you been taking them? How would you rate their effectiveness?

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NJ Ed | @njed | Apr 24 3:06pm

In reply to @cats0cats2 "Have an appointment with my neurologist mid May. Will have to ask her about Creatine for..." + (show)

I've heard of your condition in the past. Wonder if any kind of muscle relaxing medication would help taken at bedtime. Good luck with your May appointment.

Ray Kemble | @ray666 | Apr 25 11:33am

In reply to @cats0cats2 "I have thoracic polyneuropathy, so assume it is large fiber vs. small fiber neuropathy. Have small..." + (show)

Good morning, cats0cats2 (@cats0cats2)

"Bondage" is a well-chosen word for what your experiencing. I'm others will chime in with their thoughts because that part of your PN that is small-fiber PN is most likely what is causing your muscles to cinch up the way they do and for which you're already taking a slew of prescription meds and supplements. I had tried most of those, too, on the chance that one of them might have had a spillover effect on my large-fiber PN. None did. Currently, I'm only taking a medicinal food called EB-N5, but thus far neither my neurologist nor I is able to say if EB-N5 is helping with my balance. After living with my PN (since diagnosis) for more than two years, I've not had anything much in the way of a worsening of my balance. Is that thanks to EB-N5? Who can say?

I wish you a good weekend.
Cheers!
Ray (@ray666)

allegheny | @allegheny | Apr 26 2:03pm

I have idiopathic large fiber PN. My main complaint is balance, exercise helps,but I dont think that it will ever disappear, frustrating! Shoes are also important, Hoka Bondis sort of work best for me, however still searching. Best wishes

Ray Kemble | @ray666 | Apr 26 3:03pm

In reply to @allegheny "I have idiopathic large fiber PN. My main complaint is balance, exercise helps,but I dont think..." + (show)

Hi, @allegheny

I'm a large-fiber PNer, too. Because poor balance is far and away my No. 1 issue, I need footwear that provides me with an 'honest' understanding of my relationship with the ground. I had had high hopes for my Hoka Clifton 9's––and they were beautiful shoes!––but they proved to be too cushy for me feet, giving me something less than a 100% honest feel of the ground. I'd heard such wonderful things about Hokas, to include high praise from my podiatrist, that it broke my heart to have to return them.

Ray (@ray666)

cap5457 | @cap5457 | Apr 27 12:58pm

Hello all PN Suffers.
I have idiopathic large fiber sensory poly neuropathy.
That’s a lot to swallow. Pretty much means quite a lot of pain & discomfort 90% of the time. I’m not sure exactly how much of my time is consumed thinking about it.
Yes, there is a Hugh component of this condition that affects our psychological thoughts. How could there not be? Balance issues are present & add another factor.
I try to always keep myself busy with my fitness & strength training. Something I’ve always done. Eating well & trying to stay on a balanced diet. I’ve managed cut several things from diet that have indicated to be high triggers for PN. Excess Sugar high sodium products & several categories of nuts. Dropping all Alcohol is also important.
But there only so much we can do. This medical condition did not come with a Road Map & Directions to follow. Science & medical professionals (even the best of them) seem to be in the dark with this.
What seems to work for some; doesn’t for others. Trial & error. We are each on a journey to do the best we can.
This is a ferric site to exchange thoughts & ideas.
Continue to stay strong with a clear mindset that there are not so good days, ok days & better days.
Choose to direct yourselves to the Best Days Possible.