Neuropathy treatments

[CaraCara]

It's been a while (3 years) since I've read the latest on neuropathy treatments that actually work. My is diabetic neuropathy of the feet for the last 10 years. My A1c blood sugar has been about 5.7. forever. I take 500mg medformin once a day. Few doctors are not sure if it's caused by my mild diabetes or it's the idiopathic type. I take no medication for this condition except icing at night and Vicks rub also at night. Any suggestions on what medicines to take at this stage or treatments that work.

[mars1bar]

I have chemo induced neuropathy. Have tried pregabalin & amitryptline without much success. I am now trying palmitoylethanolamide - PEA and think its helping. There is also some evidence that botox works. PEA available from amazon. Those marked levagen or lipisperse or micronised are more bioavailable.

[1jay in reply to mars1bar]

Hello, does PEA address numbness or only pain? How much do you take etc? Thanks.

[mars1bar in reply to 1jay]

The dose seems to be 300mg to 1200mg per day. My pills are 450 mg & I take 2 or 3 per day. it could take up to 12 weeks for improvement. You could then reduce dose to maintenance dose. There is a chance the nerve damage might be reduced but I dont want to raise your hopes too much. If that were the case them maybe the numbness would reduce. I dont actually have numbness, mine is tingling & heat followed by pain.

The pain does seem to have improved a bit but temperatures have been high for the last week so that will not have helped.

This is a progressive disease so bear that in mond too.

I'm not sure whether PEA will work in the same way for neuropathy of different causes. However its seems to be very safe (though expensive) so worth a try.

Quite a few clinical trials have been done. Suggest search online for palmitoylethanolamide & neuropathy. But beware are some trials are funded by the manufacturing company

Good luck

[1jay in reply to mars1bar]

Great info, thanks very much.

[ziggypiggy]

CYMBALTA has been a life saver for me. Relieves my burning feet issues about 90% of the time. It's worth a shot. You'll no within a week if it helps.

[brenanddave]

Have you checked your b12 levels as I have read that medformanin can affect your levels My neuropathy is from PA B12 def b12 injs and gabapentin help me

[CaraCara in reply to brenanddave]

Thanks for your information. All my vitamins tests are normal. Unfortunately I'm not a big fan of vitamins to the point of saying there of no help for anything. Gabapentin is helping you if anything. The only think that helps my neuropathy is icing at night and Vicks rub. Medical science has been disappointing in treatments for nerve pain in general.

[brenanddave in reply to CaraCara]

Is Gabapentine fixing nerves though? Or is it just to lessen the pain from the nerve damage?

[bookish in reply to brenanddave]

The gabapentin may help with the nerve pain but I found magnesium did a better job and without the side effect of depleting folate (B9) and possibly B12. Cheers

[CaraCara in reply to bookish]

Valuable information thankyou.

[bookish in reply to CaraCara]

I notice that you said a couple of years ago that your serum B12 was 310 (ish) and that you got increased neuropathy with B12 supplements. This to me would suggest that you need more B12, as the nerves take considerable time to heal (as far as they are able, given long term damage from deficiency) and pain etc will get worse before improving as part of that healing process. Unfortunately testing is far from perfect. You could ask for homocysteine and MMA (methylmalonic acid) to see if you have signs of a functional deficiency. I recently read a haematologist advising that anyone over 51 (even in good health) should get their B12 either from fortified foods or from supplements as it is no longer possible to absorb enough from foods due to lowered stomach acidity. Sometimes vitamins have to be supplemented, as with brenanddave - having Pernicious Anaemia and therefore no way to assimilate B12, lack of which will kill, eventually, having made life most unpleasant. Personally I had been taking some B12 for many years but made considerable improvement with the addition of a small amount of methylfolate, so although this will not of course work for everyone, I am convinced of the need for some supplementation, for some people, especially those with chronic conditions and absorption issues. Incidentally, metformin can deplete B12 and there is some research suggesting that the diabetes could be the result of a B12 deficiency anyway. 310 could be enough not to be symptomatic, but as you are symptomatic, it is potentially not enough. B vitamins are essential for nerve function and can help with improving neuropathy even if deficiency is not the cause, esp B1, B6, B9, B12

ncbi.nlm.nih.gov/pmc/articl...

Best wishes

[CaraCara in reply to bookish]

Thanks on that. I'll go though my past medical tests and do some enquiries, but taking b12 sup did definitely cause worse pain so I've been shy of taking b12 from then on. Thanks on all that. Really appreciated.

[brenanddave in reply to CaraCara]

That happens when your nerves are starved of b12! The healing has begun when you feel the pain Its a long painful journey for some repairing damaged nerves from b12 def x You need b12inj if you have nerve damage

[CaraCara in reply to CaraCara]

Checking my last 2 tests. I've noticed my readings for B12 is about 450. I eat a lot of dairy, milk etc. Anyway I'm going to try a small supplement of B12 and magnesium and I'll see how it goes. Thanks.

[bookish in reply to CaraCara]

Can I suggest that you only change one thing at a time? I'd try magnesium first perhaps, and maybe an oil spray for skin rather than a tablet, depending on how your gut is and how well you think you are absorbing. (I wasn't absorbing at all so this worked better for me, and made a significant improvement. I subsequently found that I am predisposed to genetically slow COMT function, and COMT is magnesium-dependant.) You may also find that one form of B12 works better for you than another. I started with cyanocobalamin, moved to methylcobalamin, read that we actually need both methylcobalamin and adenosylcobalamin (which we can convert from cyano or from hydroxocobalamin) and now take some of all three (not cyano). Some can get quite hyper and anxious with too much methyl, so best take it slow, whatever you try. If possible, get the homocysteine and MMA tested before you take any B vits as it will quickly start to resolve any sign which could help you actually get a diagnosis. Best wishes

[mariootsi in reply to CaraCara]

Yes! Very frustrating !

[4138]

hi CarCara. I was on gabapentin for several years for Perioheral Neuropathy in my lower legs and feet. I am not diabetic. However, earlier this year, the control of pain was lessening. So I was changed to DULOXETINE, which, whilst not a miracle drug , has greatly reduced the pain. Also on the Gabapentin I was taking quite high dose several times a day. Now I take the Duloxetine only one at night. Much easier. I’m not 100% sure, but I don’t think this condition can actually be cured, due to actual nerve damage, and therefore can only be ‘managed’. A real shame for all us sufferers. I wish you all the very best!

[CaraCara in reply to 4138]

Thanks on that. I might speak to my gp to see about changing to this tablet

[4138]

I hope you have luck in doing this! Keep me posted 🤞