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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: 3 days ago | Replies (2973)Comment receiving replies
My neurologist explained that my pain comes from: my nervous system is dying and sending out erroneous pain signals - they are real to me of course -- the system is supposed to send me burning feelings when fire is touching me - but my feet and legs feel like they're burning when no fire is any where around. I tried everything available over the counter: foot fungus medicine, lidocaine spray/cream, aspirin/tylenol et. al, cbd cream, menthol ointment, before I went to my family doctor. He gave me gabapentin, then as my condition progressed (nervous system dying further up), we had to increase it until he sent me to a neurologist. She added Lyrica, we played with when to take which one and how much, then had to increase both, until she sent me to a Pain Specialist. There would be no point in me going back to Tylenol, creams, sprays, or herbs at this point - I already know they don't work for me. We are at the top dosages of medicine that the politicians in my state will let doctors prescribe, the next level is narcotics - I don't want those. I don't like anything that makes me sleepy. I will be useless once I have to start taking those. I looked into TENS implant, my insurance company won't pay for it. On this website, I have read about lidocaine infusions and some other procedures that required tests, hospitalization, bed rest for days -- all for limited or temporary results. I'm allergic to marijuana. I'm still researching alternatives - perhaps there is something in the medical world that I have tried/heard about. Peggy
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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!