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DiscussionAnyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)Comment receiving replies
Replies to "My neurologist explained that my pain comes from: my nervous system is dying and sending out..."
Very sorry to hear about your disease. Unfortunately your story is not unique among this group. Nerve pain is THE most difficult pain to control. I suggest you ask your Pain Specialist (who should be a licensed Anesthesiologist) as they will have access and experience with the methods that work the best. As far as TENS, Lidocane, etc, try to find a specialist who will set up trials for these methods. I had a Tens but it did not help. I am allergic to Lidocaine, and have tried everything else. It sounds like your doc is working with you to find the best combinations of timing and dosage for Gabatpentin and Lyrica. Lyrica is the only thing that helps me although Percocet and a spinal infusion of Dilaudid (both narcotics) seem to control it better than anything else. I don't like being groggy either but so far the Percocet or DIlaudid has not caused that side effect. But everyone is different. The pain is reduced but i still have days when I lie in bed and scream in pain. But they are not as often as they once were. It sounds like you are doing what you can. The nervous system is like a chain of sausages strung together with pain signals traveling along the chains/sausages. My particular PN is called Demylinating PN. The little sausages are covered with a film called Mylin. My mylin is dissolving and causing the signals to still travel, but run into traffic jams, road blocks and mudslides - all of which disrupt the flow of the nervous signals and change the way the brain interprets the signal it receives. I sometimes have pain that I cannot find any words to accurately describe the pain. It is so frustrating to look at my legs or feet and see that they look perfectly normal, but the pain makes it seem like they should be mangled to have all that pain generated!