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Colleen Young, Connect Director avatar

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Feb 13 12:30pm | Replies (6743)

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Ain't it the truth. Like you, I had never heard of neuropathy until about eight months ago. I had severe pain in my lower back and buttocks from a ski fall in 2016. I got the pain under decent control until 2021 when it came back with a vengeance, sort of out of the blue. We moved to Delaware in 2023. Had to get new docs for Pain Management and PCP. Had a pain pump implanted after an excellent trial. It did not provide any relief. In July of 2024 I had an EMG that showed neuropathy, aka nerve pain. It wasn't until about November of 2024 that the more insidious symptoms began to show up... pain and tingling in extremities. Now, even walking is problematic. I never felt "old" (I'm 77) until these symptoms showed up. Yes. the pain, tingling and whatever is happening at the moment occupies just about every waking moment of my day. We can only hope and pray(seriously, PRAY) that medicine will be able to find some answers to this plague called neuropathy.

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Replies to "Ain't it the truth. Like you, I had never heard of neuropathy until about eight months..."

I've been there so understand how this can eclipse everything else in your life. I'm want to let you know that they are developing meds that block specific sodium channels responsible for peripheral nerve pain. One is on the market already and it is called Journax (Suzetripine) and currently approved for acute post surgical pain. I think it is only a matter of time that it will be used for chronic pain as it has a good side effect profile, especially compared to opiates. Unlike those, this bypasses the central nervous system and acts directly to block signals from peripheral nerves.
Other companies are developing their own. It is the first non opiate pain medication to be approved in twenty years, from my understanding. I am currently taking Gabapentin which is helping a lot but hope to be able to reduce the dose and supplement with Suzetripine when available.