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What is supplement protocol. There's no way I could put my hands and cold water they would freeze off like I was sticking them in snow. My hands get so cold that I have to wrap them up and it seems like it takes 45 minutes for them to get warm. It is terrible they just get worse and worse as the days go by. I'm on gabapentin, Cymbalta. And Topamax. What are you taking for this that might be helping you. I have tried everything and nothing seems to work so I don't know what to do. Everybody knows that opioids don't help with nerve pain and we can't seem to figure out what nerve drug it's going to help me. So if you have any suggestions please let me know because I am suffering immensely. I even have it around my ribs and abdomen to where it feels like it's going to literally squeeze the life out of me.
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@pjc820 That squeezing does not sound fun for you. I've gone through temperature irregularities as well so perhaps it comes down to adapting to what works best at the time. I'm curious if heat helps, not only your coldness but, to calm and sooth the sight.
@johnbishop found a Facebook neuropathy group that founded a supplement protocol. I'm sure he will post it for you again. It is a full plan of supplements which I and others on this forum have felt beneficial for our neuropathy. Neurologists mainly recommend R Alpha Lipoic Acid and Stabalized Acetyl L Carnatine for nerve damage. I agree that they are the most impactful for me. Other helpful supplements may be magnesium, B vitamins. etc... depending on your case.
Opiod therapy is a drastic measure for pain from neuropathy. It does not heal, cure or regenerate nerves however, it masks pain and allows for better comfort. I benefit from opiods but, thats me.
It took me some time to realize that my nerve disease needed a "multitude" approach. Example: gabapentin/ lyrica, vitamins/supplements, healthy diet, no alcohol, tolerable exercise when possible, physical therapy, massage/myofascial release, meditation/mindfulness. It's not a one size fits all approach unfortunately and can be challenging, frustrating and annoying when all you hope for is relief from pain.
For me, I receive some benefit from each approach and together, the best relief that can come my way. Truthfully and sadly however, you and I and others will still not be normal because of our disease and still be left to experience pain and discomfort.
If I were you, I would be clear on diagnosis with Drs. Make sure they are doing all they can to help you. Then it's up to you to search and learn which is exactly what you're doing here on Connect.
I hope I've been helpful to you today. If it weren't for an opiod...I wouldn't be typing to you and fyi...still painful. (I'm throwing around some inappropriate words just to get through it).
I also use medical marijuana to supplement for pain. Is it legal in your state? Have you explored the option?
Rachel