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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 6 hours ago | Replies (6026)

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@jansendscards

I have small cell neuropathy. My neuropathy is opposite of most as I have extreme pain instead of numbness. My Drs don’t know what to do with my pain. My pain is sharp pain in my legs and arms. My pain is causing me not to be able to work.

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Replies to "I have small cell neuropathy. My neuropathy is opposite of most as I have extreme pain..."

Hello @jansendscards, Welcome to Connect. I'm sorry to hear that your doctors haven't been able to help with the pain from your neuropathy. You may want to read through the discussion Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/ to learn what other members including myself has shared that has helped them.

The Foundation for Peripheral Neuropathy has some information on alternative and complementary therapies that you might find helpful here https://www.foundationforpn.org/living-well/integrative-therapies/.

You mentioned your doctors don't know what to do about your pain. Were you prescribed any pain medications by your doctor or neurologist?

Hello @jansendscards I have a different rare form of PN (CIDP) but many symptoms in common with numbness etc. However, I also experience very sharp shooting pain in arms & legs, seemingly out of nowhere, but happens often. Most Neurologists don't get the pain part... say that it is not part of PN. Clearly thousands of us disagree! Your ID of small cell will be helpful to many... thanks for sharing that.
As for MEDICATION: the only thing that helped with my radiating and shooting pain is Hydrocodone. With the entire "no opioids movement" I've been told countless times that this med. & Percocet are the same. They are not.... I have nerve pain constantly in teeth as well a (a different illness) and only hydrocodone will work, and works well... 10mg. I've had to give it up as I have severe chronic migraines as well... so was forced to choose for which pain I wanted relief; migraines = Percocet... nerve pain = Hydrocodone. Without Hydrocodone, I now have NO relief for NERVE pain. It can be torturous. I hope this is helpful. No one should have to live with this kind of pain... nor with choosing which pain one must suffer & one one with which to have help.
Also, I have not once had to increase dosage of Hydrocodone, (10+yrs) no tolerance build as is taken only when needed. Percocet for migraines was just the opposite. My wish is that someone in a position to do so will research this further. I certainly have.
I hope you find help soon. Very Best wishes to you.

Hello. I have received some help from Tegratol and Lyrica.