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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: 1 hour ago | Replies (2926)

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@bravehelios

@frattmaa
Wow! I thought I had it rough until I read your post! Your suffering must be unimaginable! I suffer from chemotherapy-induced peripheral neuropathy. I was diagnosed 6 years ago with mantle cell non-Hodgkins lymphoma, subsequently underwent an aggressive form of chemotherapy, and was deemed in remission 6 months later. At the time I was warned that neuropathy was an outcome I could expect from this treatment regimen. I accepted this fact not really understanding the severity of pain I would experience. Almost immediately, I began to have pain and numbness in my hands and feet. I was treated first with Neurontin, then later we tried Lyrica. Lyrica was completely ineffective for me, so Neurontin was restarted and I presently use 3,600mg daily, though over time this has been supplemented with hydrocodone. I now have to use 50mg hydrocodone daily to mitigate my pain, though I have periods of up to several days at a time where even this amount of opiod use is ineffective. I recently have been pursuing the idea of a spinal cord stimulation surgery. I have read many good things about the improvements in technology and quality of life from same. However, my pain management physician is doing everything he can to discourage me in this endeavor. He asked me to do some further research related to this procedure and the potential negative side effects of this form of pain management. I have since done so and am now of the mind to wait on this procedure. For one thing, my HMO doesn't offer the latest technology, and I also suspect the doctor who would perform the surgery has little experience in this type of surgery. I have read many real horror stories from people who have had the procedure only to want it removed for the additional pain they suffer from the spinal surgery alone. Anyway, I suspect I may not benefit and just wanted to give some perspective to my own circumstances. You, my friend, have all my sympathy and prayers for peace and rest. I will not complain so often about my own suffering after reading what you and your son are experiencing. God's blessings on you and yours!

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Replies to "@frattmaa Wow! I thought I had it rough until I read your post! Your suffering must..."

Welcome @bravehelios, Sorry to hear your chemo treatment introduced you to neuropathy. There are a lot of different options that may be helpful and it's wise to learn as much as you can about your condition and available options that may provide relief from the pain.

You might find the Foundation for Peripheral Neuropathy helpful for learning more -- https://www.foundationforpn.org/living-well/

There is a discussion you might want to read through to learn what others have shared:
-- Chemo-related Neuropathy: https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/

You might also find this discussion helpful:
-- Anyone tried Spinal Cord Stimulation for Chronic Pain?: https://connect.mayoclinic.org/discussion/spinal-cord-stimulation-2/