Looking to connect with people who have non-diabetic neuropathy

I haven’t found anything that stop the burning, stabbing pain from my toes to my buttocks. People tell me to relax. I’m in too much pain to relax.

I have idiopathic small fiber neuropathy. I am currently taking gabapentin and amitriptyline but am not getting much relief from the burning pain on my back and arms. I would love to hear from anyone who has this and is being treated with different medications b

Hello @jnutt, Welcome to Connect. Sorry to hear you are not getting much relief from the burning pain on your back and arms. There is another condition that sounds similar to what you are experiencing -- "Paresthesia is numbness or a burning feeling that occurs most often in the extremities, such as the hands, arms, legs, or feet, but that can happen elsewhere in the body as well." -- https://www.medicalnewstoday.com/articles/318845.

There is also another discussion in the Neuropathy group on the topic here -- Paresthesia, abnormal sensations: https://connect.mayoclinic.org/discussion/paresthesiaabnormal-sensation/.

Have you talked with your doctor about the burning pain on your back and arms to see if there might be other treatments?

Your comment made me profoundly sad. If the people around you are telling you to "relax", obviously they have no understanding or empathy for those of us who live with constant pain. It is exhausting, soul crushing & takes the joy out of life. We would love to "relax", but that's not an option. My husband is clueless & tired of listening to my problems, my best friend says "it could be worse, you could be homeless". In other words, shut up & deal with it. So that's what I try to do.

Hi Chris, Any suggestions to relieve the burning pain 24 hrs a day? It has been ten years now and relief would be wonderful!!! I have no balance also and use a walker. I used to show and ride my horses also but don't believe that effected this problem Need relief!!!!!!

pamelaz - I see a lot of folks on here experience pain and to me, the neuro doc has to (hopefully) have the ability to prescribe a med that will offer some relief. Personally, I have all numbness lower legs and feet due to axonal PN. I have lower back pain but that's something else. I really feel sorry for many with pain due to PN.

I had a nerve block for occipital neuralgia it did not help. You should try this block. I will try PT again I already did 3 months it did not help . Thanks for your concern.

Good evening @madgemgunia.........you must be exhausted from fighting pain for 10 years. I received my diagnosis 10 years ago also. I started with Nortriptyline and Gabapentin. At the same time, a nurse friend introduced me to medical cannabis. I have been able to control most of the burning pain with a sequence of different options that have been developed and offered for pain, numbness, and the burning from tingle tangles.

If you choose this route, you must be your own prescriber unless there is a cannabis pharmacologist associated with the dispensary you use. I use only tinctures and topicals and only from Papa and Barkley. It might be worth your while to visit their site as they explain their products and the nature of medical cannabis very well. They have two sites
papaandbarkley.com and papaandbarkleycbd.com. I have always used products that are a combination of CBD and THC. For example, I might use a topical of 3:1 CBD/THC for chronic "burning" and numbness. I also keep a jar of 1:3 CBD/THC for any acute pain that creeps up on me.

The same strategy can be used with a liquid tincture. In fact, I don't think I have had a day in my life without medical cannabis for 10 years. It does keep the door open to pleasure and happiness as long as I anticipate and look for joy in every day.

Is this something you have access to and are willing to try?
May you be free of suffering and the causes of suffering.
Chris