Let’s have a chat about what if anything works to improve your life wi

My Neurologist just started Qutenza Patch treatment on me. They are not fun treatments. After my first one I have a little bit of relief. He told me the second and third treatments will help a lot more. I'm hoping it works. So far it seems yo help a little so I'm hopeful.

There is no doubt that PN impacts all of us in different ways. With about 100 different causes of PN, makes sense that many of us are idiopathic. That is frustrating. Like Ray, I feel bad for those with pain, I have numbness, poor balance and drop foot, no pain. So, what improves life? Small accomplishments. Yesterday, I did things outside that I thought I could not do. When I finished up, I felt a feeling of accomplishment. These small things you think you can't do but face the challenge and do it, for me that makes me feel better. I keep in mind there are a lot of things out there way worse than PN. As difficult as it may be, we can live with PN. Ed

The one thing that’ll improve your life is having an extremely qualified team of doctors who work together. I have a great primary care, doctor two great pain management doctors, a great kinesiology doctor and a great orthopedic surgeon. I rotate around, they’re happy to order the tests and we keep tap of where I am in my aging process at 68 having degenerative disc disease and other aging issues. Right now I am in between another back surgery and no more steroid injections. I do MFR twice a month. There’s a section here on it. Search it out deep my facial tissue release really helps me. There is nothing else at this point and the neuropathy radiculopathy was keeping me up every night with pain and burning. And the topical help I’ve tried everything else. Nothing was stopping the burning and the atrophying on my left leg and like I said I’m early for the next surgery and too late for pain management steroids. So what did I do? The only thing left massive exercise! Well for me it’s massive because I hate exercise. And I’m happy to report. I’m sleeping well at night no more burning numbness, tingling itching pain pain pain pain.! I sit on my stationary bike for an hour. I do stretches while I’m on there. I do some resistance and I walk the dog twice a day. I’m feeling better. My body is more stable and I’m sleep great at night now. I also forgot to mention that I take light out dose opioids for chronic pain in my tailbone for the last 30 years. Part of my pain management has been taking light dose opioid for 30 years for a tailbone pain that can’t be eliminated. Sometimes I needed the light dose opioid to begin the exercise. Now that I am doing a really great exercise routine even my use of the opioid has declined after 30 years. All my doctors are pretty happy with my proactive approach.

@kathieb48 From what I have researched and read it is so different for each individual and how they are medicating and exercising/moving. Stick with it! Don't give up! Your legs may feel weak today but, keep moving. My legs felt bad today and I decided to go for a fast walk. My legs hurt but didn't get worse as I walked. I worked my way through it and I made it 2 miles. Tonight I feel so much better! Stick with the pt, It is good for you! Good luck! I care!
Mike

I have good days and bad days. On days I feel weak, I beat my brains trying to think about what in my diet or activities might have contributed. Sometimes it’s just overuse or fatigue with me. Sometimes I decide to take a potassium vitamin thinking maybe that will help. I do a little extra leg stretching while I’m sitting down. But I honestly haven’t cracked it - I find it runs its course and I have my good days back again.

I don't have much to offer on this subject other than, stick with groups that help, like this one. And just keep on, keeping on, being an open minded selfless guinea pig for personal health and wellness. I'm always looking for that naturopathic cure. So I use myself as a guinea pig on my quest to find it. Wishful thinking, huh? I have earnest hope in the healing properties of NA-R-Alpha Lipoic acid. I'm getting ready to up my daily intake from 600mg to 900mg and then maybe 1200mg. I hope the increase in ALA helps neuropathy and all the nerve issues I have in my body. I'm also involved as a beginner with Qi Gong Eight Brocades and Tai Chi. I also practice self acupressure and I hope the meridians I'm working on will help with bladder nocturia, so I don't get up so many times during the pm/am. I try to wear clothes that don't bind, even moderately. And I stay home a lot so I'm mostly bare foot. I'm buying larger size shoes so ridiculopathy in my right foot doesn't interfere with my movement from pain when I run errands. I do a lot of prayer and self-talk to manage stress. And I continue to thank the Lord for the life I have at 82 years, even if I'm restricted in certain areas. But the past two weeks of pain and suffering have been a horrible level #10 and my emotional level has been very weak, so I came here and started reading responses. And to everyone here, I feel the need to say thank you. Thank you for the comfort of this group. Hugs to All.

I was diagnosed with this damn condition in my feet about 2 years ago. The problem is, it took 3 neurologists, and 2 neurosurgeons almost a decade before someone would tell me what I already knew, there wasn't anything they could do about it. There's no cure, or real treatment, all you can do is try to treat the pain that's never going to go away. We're stuck with this until the day we die.

The worst part, none of these "specialists" offered any words of encouragement, or sympathy, or even any medications that might help. Basically I was told to just deal with it. My GP gave me my prescription for gabapentin, none of those "special" doctors.

Currently I'm taking 3600mg of gabapentin a day, 4/300mg capsules 3 times a day, and 1200mg of alpha lipoic acid, 1/600mg capsule twice a day to dull the pain in my feet. Most days it's not to bad, some days are worse than others, depending on how much time I spend with my feet elevated in my chair.

I've tried nerve blockers and CBD products with zero results. I won't waste our money on anything sold on-line or on TV, it's all a scam. Once a nerve has been damaged or died that's it, game over.