Neuropathy pain.

Posted by jlor @jlor, Sep 21, 2018

Hello, I have had this so called"neuropathy" for almost two years now, it began in dec 2016, symptoms got worse over the next few months, my a miracle, my symptom subsided in June last year, however, symptoms returned with a vengeance in November last year, almost 6 months symptoms free. I have severe burning and very painful tingling sensa.tions in my feet, primarily my right foot, left foot I can bear, in fact when I'm out and about, I don't feel symptoms in my left foot, but right foot is hell. Have tried , I think everything this planet can offer, now I'm on gabapentin, 800 mg 4 times a day, tried, duloxetine, tried amytriptyline , neurologists last year said I had axonal sensory neuropathy, skin biopsy last year, negative for small fiber, ncv this year was fine. I'm now seeing as a last resort a chiropractor specializing in neuropathy and I'm undergoing laser and electrotherapy. Can someone recommend other meds that can help, this pain is really excruciating. So far my hands are clear.

Hello @jlor, I only have numbness with my small fiber peripheral neuropathy and take over the counter supplements which help some but there really is no cure for neuropathy. Medications treat or rather mask the pain and there are no topical creams or lotions that help with the numbness/tingling. Some of our members have found relief from the pain with medical cannabis and CBD oil. I would like to invite you to read and participate in the following discussion where you will meet members like @artscaping @gailfaith @vander626 and others that share some or all of your symptoms and can offer suggestions for you.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

If you want to read about how I found the supplements that have helped me and also helped other folks with the pain you can read my story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@jlor have you done any research on any of the treatments you are thinking about?

John

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Thanks john, what supplements are you taking?

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@jlor

Thanks john, what supplements are you taking?

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I take a protocol of vitamins and supplements from a closed Facebook Group I found while I was doing some research. Really too many to list off of the top of my head plus the dosage. It is at the bottom of my story that I linked to in my previous post but I'll repeat the link here.

Link to my PN story:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Link to the groups website that lists all of the vitamins and supplements I take.
http://solutions2pnpd.com/

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Thank you John, I found it. This protocol, can you buy these from Amazon, there are some links to suppliers, and for how long shall I follow this protocol?. Had it helped you with your condition?. I'm going to try it.

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@jlor

Thank you John, I found it. This protocol, can you buy these from Amazon, there are some links to suppliers, and for how long shall I follow this protocol?. Had it helped you with your condition?. I'm going to try it.

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@jlor I would not order anything until you join the group, read the new member information and the instructions for taking the protocol and understand how it all works.

I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven’t made any more progress since December but I’m OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.

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I have been diagnosed with peripheral neuropathy which I have had for approx 5 years. PN affects the soles of the feet and ankles and also the ends of the fingers, the worst and most common type of pain is a severe burning sensation as well as the numbness/loss of feeling.This disease is often suffered by people with Diabetes, however I am not diabetic and the cause was probably because I was addicted to the game of Golf and wearing $150 golf shoes instead of $250 shoes. ( On the course 4 times per week when I retired) Possibly commonly called "crush neuropathy" . Medication tried was brand named Lyrica which is Pregabalin, however the side effects were worse than the pain, dosage 50mg a.m. and 75mg p.m. Barely noticeable relief, so then tried Amitriptyline – waste of time. Will investigate the use of Gabapentin, however 800mg – 4 times daily as mentioned by @jlor in Sept 2018 for neuropathic pain seems a monstrous dose to me.

Bill

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@billjim651

I have been diagnosed with peripheral neuropathy which I have had for approx 5 years. PN affects the soles of the feet and ankles and also the ends of the fingers, the worst and most common type of pain is a severe burning sensation as well as the numbness/loss of feeling.This disease is often suffered by people with Diabetes, however I am not diabetic and the cause was probably because I was addicted to the game of Golf and wearing $150 golf shoes instead of $250 shoes. ( On the course 4 times per week when I retired) Possibly commonly called "crush neuropathy" . Medication tried was brand named Lyrica which is Pregabalin, however the side effects were worse than the pain, dosage 50mg a.m. and 75mg p.m. Barely noticeable relief, so then tried Amitriptyline – waste of time. Will investigate the use of Gabapentin, however 800mg – 4 times daily as mentioned by @jlor in Sept 2018 for neuropathic pain seems a monstrous dose to me.

Bill

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Good evening @billjim651 and thanks for your post suggesting that you may try gabapentin. It was the first prescription I was given 5 or 6 years ago. Initially, 1200 mg was too much for me. Gabapentin and I had a rough start. What did work for me was nortriptyline for nighttime sleep. We changed the dosage and, moved gabapentin to 900 mg in the evening. Then I tapered off Nortriptyline and replaced that with duloxetine, currently rated as one of the best Rx for neuropathy.

Gabapentin for some is a daily go-to and allows modification in dosage and the dosage time. I found out how valuable it was one night when I forgot to take it. A really bad memory. For me, this medication shuts down the machine that creates numbness, tingling, and even some gut-wrenching evening pain.

The need to be somewhat calm and relatively pain-free on a good golf day demanded the best from Medical Cannabis. You are your own clinician and pharmacist. I think you might even be able to play the back 9 after a nice lunch. Let me know if you would like specifics. Fighting this condition is a challenge. Don't give up…….knowledge is power. Dig in and learn about your options. Just make sure you don't get sucked into pricey machines and treatments. As @johnbishop reminds us…..there is no cure….just rather simple ways to get the most out of living with neuropathy.

Now that I have written this, I am missing golf.
Be safe and protected.
Chris

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@artscaping

Good evening @billjim651 and thanks for your post suggesting that you may try gabapentin. It was the first prescription I was given 5 or 6 years ago. Initially, 1200 mg was too much for me. Gabapentin and I had a rough start. What did work for me was nortriptyline for nighttime sleep. We changed the dosage and, moved gabapentin to 900 mg in the evening. Then I tapered off Nortriptyline and replaced that with duloxetine, currently rated as one of the best Rx for neuropathy.

Gabapentin for some is a daily go-to and allows modification in dosage and the dosage time. I found out how valuable it was one night when I forgot to take it. A really bad memory. For me, this medication shuts down the machine that creates numbness, tingling, and even some gut-wrenching evening pain.

The need to be somewhat calm and relatively pain-free on a good golf day demanded the best from Medical Cannabis. You are your own clinician and pharmacist. I think you might even be able to play the back 9 after a nice lunch. Let me know if you would like specifics. Fighting this condition is a challenge. Don't give up…….knowledge is power. Dig in and learn about your options. Just make sure you don't get sucked into pricey machines and treatments. As @johnbishop reminds us…..there is no cure….just rather simple ways to get the most out of living with neuropathy.

Now that I have written this, I am missing golf.
Be safe and protected.
Chris

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Thanks for your prompt and informative response. I will talk to my Doc regarding meds mentioned to make sure there is no possibility of adverse reactions with a couple of other meds I take.

I know that once the nerve ends are damaged, there is no way back – hopeful something else will give me some relief without all the side effects of Pregabalin, an anticonvulsant as is Gabapentin and was developed by Pfizer to treat Epilipsy. The skeptic in me tells me that was another grab by a Pharma Giant to make another dollar.
Best regards,
Bill

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@billjim651

Thanks for your prompt and informative response. I will talk to my Doc regarding meds mentioned to make sure there is no possibility of adverse reactions with a couple of other meds I take.

I know that once the nerve ends are damaged, there is no way back – hopeful something else will give me some relief without all the side effects of Pregabalin, an anticonvulsant as is Gabapentin and was developed by Pfizer to treat Epilipsy. The skeptic in me tells me that was another grab by a Pharma Giant to make another dollar.
Best regards,
Bill

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Oh, yes…..the Fosamax story. My local pharmacists are very special. They tell me about possible interactions, take off on their lunch hour to locate a product in another county, call my clinicians as needed when I don’t remember why I am taking a medication, and find Specialty Pharmacies for me. I am one lucky person. Just be aware…..be alert….. hold onto your self as your advocate.

Connect is always here for you….24/7.
Chris

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@artscaping

Oh, yes…..the Fosamax story. My local pharmacists are very special. They tell me about possible interactions, take off on their lunch hour to locate a product in another county, call my clinicians as needed when I don’t remember why I am taking a medication, and find Specialty Pharmacies for me. I am one lucky person. Just be aware…..be alert….. hold onto your self as your advocate.

Connect is always here for you….24/7.
Chris

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Oops, forgot something.. have you had a skin biopsy for SFN…..small fiber neuropathy. Chris

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@artscaping

Oops, forgot something.. have you had a skin biopsy for SFN…..small fiber neuropathy. Chris

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No, and was not mentioned in conversation with my GP (Doc) at the time he diagnosed my PN.
Will run this by him shortly when we discuss meds.

I believe in the "Mind over matter" approach to coping with my level of PN and also try to keep occupied which seems to help.

A bit of a "high" on MC sounds ok to me – Lol.
Bill

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@artscaping

Good evening @billjim651 and thanks for your post suggesting that you may try gabapentin. It was the first prescription I was given 5 or 6 years ago. Initially, 1200 mg was too much for me. Gabapentin and I had a rough start. What did work for me was nortriptyline for nighttime sleep. We changed the dosage and, moved gabapentin to 900 mg in the evening. Then I tapered off Nortriptyline and replaced that with duloxetine, currently rated as one of the best Rx for neuropathy.

Gabapentin for some is a daily go-to and allows modification in dosage and the dosage time. I found out how valuable it was one night when I forgot to take it. A really bad memory. For me, this medication shuts down the machine that creates numbness, tingling, and even some gut-wrenching evening pain.

The need to be somewhat calm and relatively pain-free on a good golf day demanded the best from Medical Cannabis. You are your own clinician and pharmacist. I think you might even be able to play the back 9 after a nice lunch. Let me know if you would like specifics. Fighting this condition is a challenge. Don't give up…….knowledge is power. Dig in and learn about your options. Just make sure you don't get sucked into pricey machines and treatments. As @johnbishop reminds us…..there is no cure….just rather simple ways to get the most out of living with neuropathy.

Now that I have written this, I am missing golf.
Be safe and protected.
Chris

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Hi Chris, how are you? glad you fared well with your COVD vacs. After reading your post it seems you are taking Gabapentin, Cymbalta, and MM to control your symptoms. I have considered Cymbalta (Duloxetine) per my neuro suggestion but MM is not yet legal in my state.My question is: do you have any side effects/interactions from the cymbalta and/or gabapentin? My neuropathy has become somewhat worse lately and the non-thc CBD doesn’t seem to help but after reading side effects of duloxetine I am hesitant. The gaba does put me to sleep but I now am looking for something to take during the day. Thanks, Helen

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