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Posts (262)

2 hours ago · any good advice or encouragement for a long car ride? in Neuropathy

@notborntoburn, @lisalucier, I just noticed this post and the request for some input on traveling. This is a tough one and I am still struggling with it. Most of my travel since becoming somewhat housebound with small fiber neuropathy and myofascial pain syndrome has been by air. Gone are the road trips to Yosemite or Santa Fe. I can only sit for a couple of hours as you describe. Even when I am doing the driving, my arms, wrists, and hands begin to "burn" and I have to pull over. First things first…..I have found that a myofascial or MFR massage right before I go helps. And while at Mayo Rochester for 7 weeks over the holidays, I strengthened my bad fascia knee by visiting all 19 floors of the Gonda Building. Every 3 hours there is a need to get prone for about 20 minutes with ice and a medical cannabis tincture. My P and B topical takes the needles out of my hands. And my partner works on my numb and purple feet.

As we all know….pain creates anxiety which creates more pain and so it goes on and on until I, for one, lose control and just crash. I am on a mission to stay ahead of both the anxiety and the pain. It seems like you just can't let it take over or even get a head start. So…I plan my day and my medication dosages…..starting with anti-anxiety capsules in the morning along with a 2:1 CBD/THC tincture. After 3 hours, I need to sit a spell, use a topical and dose with another tincture. A bench or the back seat of the car provides an opportunity to regain some pain control over the "burn". You can't say…."oh it's not bad enough YET", the NOT YET becomes the NOW unless you stay ahead of it. Wishing you a pain-free journey. Chris

3 hours ago · After knee replacement surgery in Joint Replacements

@johnbishop, Thanks John….that was informing….and the warning about misdiagnosis was pertinent to dealing with idiopathic causes.

5 hours ago · After knee replacement surgery in Joint Replacements

@danielad, @gldnrtrvrlvr, @tazscott @johnbishop, @jenniferhunter, You know, I just had an awakening. Many of our community have developed neuropathy somewhere in their bodies and sometime after what looks like multiple traumatic incidents, e.g. two helicopter crashes, falling down mountains and tumbling off horses. And then I read quite a few profiles and posts of multiple surgeries to repair, replace and renew. We are also living longer and those damaged and repaired areas are required to hang on and perform. But nowhere does it say they have to be quiet about it. Some days they scream and some days they whisper.

John, do you know of any research that points to trauma as in injury or surgery, as an impetus for diagnoses of "idiopathic". Are all of us in that "dumping ground of causes" responsible for our own condition? Did having 13 orthopedic surgeries ensure my acceptance into the "idiopathic" group? When I was told at 27 while hanging face down in a sling in the hospital for 3 days that I would have difficulty later in life, did I listen? Did I modify my risk-taking behavior? Of course not. Can we pass along words of precaution to the young folks we interact with….grandchildren, nieces, nephews, even great-grandchildren? Sure…but will they listen? "Methinks" they will not change their behavior. So….it is up to medical researchers to find solutions and our providers to disseminate the mindful messages appropriately along with helpful medications and lifestyle changes. My best pain-free day to all of us……we sure are listening now. Chris

9 hours ago · After knee replacement surgery in Joint Replacements

@johnbishop, forgot to mention that the fascia issue happened about 4 years after TKR. I even went back to the surgeon. He personally walked me to X-ray and waited for the pics. When he said there was nothing amiss with the knee apparatus, he hugged me and said, “I’am sorry Chris, it’s the fascia.” I didn’t know what that meant or why I got the hug. I do now and that is why my daily mantra is to be free of suffering even if it is only for a few minutes or better yet, a few hours. Chris

12 hours ago · After knee replacement surgery in Joint Replacements

@johnbishop Wow! I developed fascia issues about 3 years ago while hiking around a quarry. Thank goodness for MFR therapy. Without that soft touch technique, I would be in deep doo-doo. Have a great rainy day. So glad we got the deck furniture out complete with all the cushions. Chris

1 day ago · Laser ? in Neuropathy

@wisfloj Good morning again. I like the gel insert idea. I have a wrap with gel that can be hot or cold. Works quite well till I fall asleep and it melts. Have a lovely afternoon. The Cardinals and Orioles are providing a color show at the bird feeder. Beautiful. Chris

2 days ago · Living with Neuropathy - Welcome to the group in Neuropathy

@johnbishop Thank you John for posting the link to this informative article from a trusted organization. It has been helpful for me. As we struggle to find relief from pain and discomfort, we are sometimes easy prey for those who promote unreliable and ineffective options. Take care of that knee. Chris

3 days ago · Does anyone find that a brand of shoes helps your foot neuropathy? in Neuropathy

@lorirenee1 Today I learned something and you have been my teacher. You wrote that you have learned to live with “background” pain. That perfectly describes how I feel at this point. Some pain is tolerable. Some becomes more tolerable when we are distracted by something or participate in an activity. So the 1-10 scale doesn’t work for us. Maybe you just call us pain warriors. Thanks for the insight. Be free of suffering today and enjoy the evening. Chris