Neuropathy pain.

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

Thanks john, what supplements are you taking?

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/

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.

@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.

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

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

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

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

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