Non opioid alternatives for chronic peripheral neuropathy.

Posted by bawina @bawina, Dec 12, 2021

I have had chronic peripheral neuropathy for 8 years. I live in central Canada. I am on two opioids (methadone for pain NOT addiction and hydromorphone). I am also on Pregablin.

My pain specialist is following the Chronic Pain Guidelines here with the instruction to taper off my opioid medication with the goal of taking me off the meds completely.

Does anyone have suggestions for non-opioid interventions? I’ve tried acupuncture but my physiotherapist says it usually won’t help after the first 3 years of neuropathy symptoms.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Implanted Medtronics Stilumator helps (pain from 7 to a 5).

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Hello @bawina, Welcome to Connect. I know it's difficult trying to deal with chronic pain when your current treatment doesn't seem to be helping. I'm glad to see that you are searching for information and advocating for your own health. I only have numbness with my peripheral neuropathy so am fortunate in a sense that there are no pain drugs that help with the numbness. There are a couple of discussions you might find helpful while we wait for other members to share their experiences with what has helped with their neuropathy pain.

-- I shared my story along with other members in the Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- SMART Goals and Chronic Pain: What are your goals?: https://connect.mayoclinic.org/discussion/smart-goals-and-chronic-pain-how-smart-are-you/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@rwinney, @budo7, @greenacres, @kenc and others may also have some experience or suggestions to share with you.

Have you heard of or tried Myofascial Release Therapy (MFR)?

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@johnbishop

Hello @bawina, Welcome to Connect. I know it's difficult trying to deal with chronic pain when your current treatment doesn't seem to be helping. I'm glad to see that you are searching for information and advocating for your own health. I only have numbness with my peripheral neuropathy so am fortunate in a sense that there are no pain drugs that help with the numbness. There are a couple of discussions you might find helpful while we wait for other members to share their experiences with what has helped with their neuropathy pain.

-- I shared my story along with other members in the Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- SMART Goals and Chronic Pain: What are your goals?: https://connect.mayoclinic.org/discussion/smart-goals-and-chronic-pain-how-smart-are-you/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@rwinney, @budo7, @greenacres, @kenc and others may also have some experience or suggestions to share with you.

Have you heard of or tried Myofascial Release Therapy (MFR)?

Jump to this post

I have researched MFR and thank you for the information. I will read through it shortly.

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What happens when you come off the meds ?

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@twobrooklyn
I was on the fentanyl patch primarily for shoulder and other pain but it helped substantially with my Neuropathy. I also took Percocet for breakthrough pain. I came off fentanyl with no problems and rarely take Percocet. I believe it was because I came off so slowly, perhaps more slowly than necessary and more slowly than my doctor had planned.
I agree with what @johnbishop said about narcotics,
“However, people who have continuing pain should not let the fear of dependence keep them from using narcotics to relieve their pain."
Just stay the course the doctor orders.
Take care,
Jake

REPLY

@bawina Hi there, I'm glad you are reaching out to seek alternatives to pain management other than opiates. That is a huge step and takes courage to get through. Congratulations, you can do it!

As someone who lives with small fiber neuropathy (SFN) and central sensitization syndrome (CSS), I have been through all the traditional medical interventions as advised by doctors from infusions, injections, ablations, acupuncture, opiates, muscle relaxers, sleep meds, medical marijuana, Botox, etc...I don't care to discuss it all because it was never my preference, I just never knew a better way at the time.

Taking control of our health once it becomes chronic and there is no miracle drug or procedure, verses depending on doctors, requires a mind set. I was fortunate to attend Mayo Clinic Pain Rehab Center (PRC) last year where I weaned off chemicals that were never truly helping me, in fact enhancing pain and my central nervous system. I learned a physical fitness plan of daily stretching, physical therapy and cardio, received cognitive behavioral therapy to help with emotional and behavioral struggles.

For those who are not able to get to a rehab center like Mayo, there may be local options and alternatives in your area. I recommend working with your PCP and discussing a plan of action. Here is a link for Mayo PRC. If nothing else, reading about it helps give a guideline for self help and management:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I wish you the best of luck in your pain management journey and would love to hear how you progress towards your goal. Might you let me know how you are doing and what your next steps may be?

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@jakedduck1

@twobrooklyn
I was on the fentanyl patch primarily for shoulder and other pain but it helped substantially with my Neuropathy. I also took Percocet for breakthrough pain. I came off fentanyl with no problems and rarely take Percocet. I believe it was because I came off so slowly, perhaps more slowly than necessary and more slowly than my doctor had planned.
I agree with what @johnbishop said about narcotics,
“However, people who have continuing pain should not let the fear of dependence keep them from using narcotics to relieve their pain."
Just stay the course the doctor orders.
Take care,
Jake

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I used Lyrica for my neuropathy for years. But, the general practitioner who prescribed it to me moved to another part of the state. So, this last time I got a prescription for it, I got the prescription from an LPN. She really didn't want to give me the prescription, but my brother-in-law assured her that I wouldn't abuse it. This was over a month ago and I've used all of what I received. Now that I have used all of what I received, I'm still in pain and can't get any more. So, either I suffer through the pain or I try to get the HFX device put in, unless anyone has any suggestions.

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@relrod

I used Lyrica for my neuropathy for years. But, the general practitioner who prescribed it to me moved to another part of the state. So, this last time I got a prescription for it, I got the prescription from an LPN. She really didn't want to give me the prescription, but my brother-in-law assured her that I wouldn't abuse it. This was over a month ago and I've used all of what I received. Now that I have used all of what I received, I'm still in pain and can't get any more. So, either I suffer through the pain or I try to get the HFX device put in, unless anyone has any suggestions.

Jump to this post

Welcome @relrod, I'm not sure why you can't get the prescription anymore if your neuropathy diagnosis is in your medical record. The Foundation for Peripheral Neuropathy has a list of treatments people have found helpful on their website here - https://www.foundationforpn.org/treatments/. You mentioned you were thinking about trying to get the HFX spinal cord stimulator put in. You might find the following discussion helpful:

-- Anyone tried Spinal Cord Stimulation for Chronic Pain?: https://connect.mayoclinic.org/discussion/spinal-cord-stimulation-2/

Have you talked to your doctor about the HFX device?

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