Update on my DRG stimulator Implant. Implanted 12 days ago.

@sunnyflower Hi, Sunny, Even your name reflects your kindness! When I first read it, I thought of burning, also. Burning from the sun, and serious nerve symptoms. Yes, our description of pain did sound so much alike. As I write, my feet are elevated on the couch, just burning away. If I didn't know better, I would think there was a lit fire inside them. And that is with a DRG stimulator wires and battery implanted in me. I don't know. I just don't know. I will get out today, and meet a friend outside, for lunch. It is about 90 degrees outside, but we will sit under a canopy, and enjoy getting together. I normally kiss my friend hello, but now, we stay away. Life is just strange, and unpredictable. Love everything, as much as you can. Pray when you can. I am gonna go walk around my house now. Sometimes walking helps. Love to you, Lori Renee

Hi Lori, so glad you're getting out w/ friends. I find distraction is the best medicine for our pain. I can relate to your description of fire. But since I also have Raynaud's Dz, my feet/toes and hands/fingers are freezing to the point of pain so I have to use both heat and ice. The burn is liike liquid nitrogen; so cold it burns. So heat/ice alternating. My neuropathy pain is strongest in my knees and wonder if anyone else experiences that? Take good care, Sunny

@lorirenee1 I'm always hoping for the best for you Lori. 🤞🏻 Going to keep hoping for more improvement after all you've been though with the implant. An unbelievable amount of patience is required and you're doing a great job of staying positive. 👍🏻

Hi @sunnyflower the way you describe this affliction of yours it sounds like Dante's Inferno. Not trying to be funny at all. Truly it sounds like a type of living in hell here on earth. You are the first one that I can remember describing their neuropathy being bad in their knees. I know you had said earlier that you keep a chilled gel-filled blanket on them. I am glad that something gives you some relief.

I just came home from volunteering for the Red Cross so I have been gone all day. I walked in and said hi to my dear sweet wife and could immediately tell by the look on her face that she was in a lot of pain and had been for several hours. She had that hung down, eyes down cast and squinty grimace that is the tell tale sign that we all know. She is in so much pain today and this is probably the 5th day in a row of just misery. As a caregiver it makes me so sad not to have anything to give her or do for her. She has severely burning feet and a terrible headache, and I am sure very bad tinnitus, she always has that. This is just such a frustrating problem. Just needed to vent, I am so sorry for your personal cross of pain to bear Sunny, it just seems like there so many very wonderful people who are suffering so much. I know it's for a perfectly good reason that only God knows. But all my best to you, Hank

Hi Lori, so glad you're getting out w/ friends. I find distraction is the best medicine for our pain. I can relate to your description of fire. But since I also have Raynaud's Dz, my feet/toes and hands/fingers are freezing to the point of pain so I have to use both heat and ice. The burn is liike liquid nitrogen; so cold it burns. So heat/ice alternating. My neuropathy pain is strongest in my knees and wonder if anyone else experiences that? Take good care, Sunny

@sunnyflower Hi Sunny, I do find that distraction with friends is the number one thing to do for pain. They always marvel at me, because I never look sick. I put on makeup, do my hair, and just do the best I can. But sometimes as I sit, my feet are throbbing intensely or just on fire. Sometimes I look at them to see if they look anywhere near normal, because they feel horrid. Oh well. Thank God, that I manage my distractions with friends, fairly decently. Your mixture of illnesses sure makes for a plethora of oddness in you. Such pain from so many things. I used to have Raynauds symptoms, as my hands would blanch in the winter, and temperature changes would make them do that. I do understand so cold, that it burns. I can be freezing and burning at the same time, and often. I can feel like my feet are soaking wet, with no water on them at all. I have to tell you, though, I have never heard of neuropathy effecting the knees. You are literally the only lady that has described this. What does the pain in your knees feel like? I am much more familiar with arthritis in the knee. When Hank described you as an inferno, he is right. Horrid. I don't even know what to say. It is only my feet that does these horrific things, and that alone, wipes me totally out. I wish I had answers, but there are few. Just things to bring down the pain for an hour or two.....I am glad you are here. You are not alone in this. Love, Lori

@jesfactsmon Hank, I love that you work for the Red Cross. They have a perfect person to be there!!! Could not be better. I just hate to hear how bad Linda is. Just heart breaking. She has so many things to deal with. And I know, you can only offer your support to her. But you have no idea how much that means to someone in pain. I really do think it might be the best form of medication, ever. There is great comfort in being supported. I know she loves you dearly for this. Yes, we all need to vent here. This is the place to do it, and everyone really understands. As I write, I remember that Linda's neuropathy is a result of Chemo. Such utter tragedy. What they have done to her to cure cancer. What a joke! Terrible. Criminal. The oncologists are in the Stone Age, in so many ways. What can I even say? Only that I care, and if I saw you guys in person, I would screw Covid, and gave you both giant hugs from the heart. Love, Lori Renee

@lorirenee1 Lori, giant hugs right back atcha. Yes, it's a marvel to me how I went through the first 62 years of life with zero awareness of neuropathy. It's such a living hell for so many people but it sure doesn't get the marketing play that, say, breast cancer does (of course nothing gets THAT kind of attention, which tells you where the $$$ is at) and so everyone with neuropathy suffers in relative silence and solitude, at least for most of the rest of society. And boy when you are going to do chemo they sure keep the fact of neuropathy under wraps. NO ONE mentions it. I am certain it's a conspiracy of silence. They do not want anything to keep you from having the chemo done to you and they do not want you to know what you may be in for. And just to be fair, I am sure there are some who are not in on the conspiracy, just the ones running the show mostly, and others too. We experienced it firsthand with several of the medical professionals we dealt with during Linda's cancer treatment.

Neuropathy is an exquisitely Machiavellian disease and it deserves an equally ingenious solution. My belief is that there is one out there and it will present itself, hopefully within the timeframe most of our lifetimes. Anyway, that is what I believe and what I hope for. All of you here most definitely have it coming to you after all you have been through. Best (and hugs), Hank

Hi Lori!
My knees burn something awful most of the time! Only my ice gels help. They stay cold for a long time when I cover them with my winter weight down comforter. I also have arthritis in both knees. My ortho doc wanted to do a total knee replacement on my left knee several years ago which is bone on bone, but I don't think I can handle the pain based on my history of prior surgeries.

I am steroid dependent and have severe osteoporosis (bone density scan tomorrow - really scary to see results.) My endocrinologist have wanted me to take the IV medication for it but it lasts 3 months at a time (due to my kidney Dz, which I forgot to mention in my novel about myself and how I live with neuropathy)

Yes, my feet also always feel wet!! Also, when I walk, it feels like I 'm walking on thick sponges! So many different sensations at same time. Go figure!

I forgot to include grandkids and babies are great distractions too!

Thank you ahead of time for my repeats. I just can't remember what I' ve said to who on this blog.

I hope you have a blessed and peaceful night and tomorrow and in your life.

Thank you so very much for your encouragement and support. It means the world to me! 😊

Hi Lori!
My knees burn something awful most of the time! Only my ice gels help. They stay cold for a long time when I cover them with my winter weight down comforter. I also have arthritis in both knees. My ortho doc wanted to do a total knee replacement on my left knee several years ago which is bone on bone, but I don't think I can handle the pain based on my history of prior surgeries.

I am steroid dependent and have severe osteoporosis (bone density scan tomorrow - really scary to see results.) My endocrinologist have wanted me to take the IV medication for it but it lasts 3 months at a time (due to my kidney Dz, which I forgot to mention in my novel about myself and how I live with neuropathy)

Yes, my feet also always feel wet!! Also, when I walk, it feels like I 'm walking on thick sponges! So many different sensations at same time. Go figure!

I forgot to include grandkids and babies are great distractions too!

Thank you ahead of time for my repeats. I just can't remember what I' ve said to who on this blog.

I hope you have a blessed and peaceful night and tomorrow and in your life.

Thank you so very much for your encouragement and support. It means the world to me! 😊