1. < Neuropathy

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

Posted by lorirenee1 @lorirenee1, Jul 21, 2020

Hi all my fellow Neuropathy Warriors, Just wanted to update you on this DRG stimulator in me. Basically, so far, not so good. It seems to help pain in the morning, pain from a 9-10, to about a 5-6, maybe a 4, at times. As the day goes on, pain gets worse. Nights are still bad. Yesterday was the first time I walked outside. I walked around the block twice, and it was wonderful to smell fresh air, use my legs, etc. However, when I came back into my house, I felt like my feet were on fire for a few hours. Another thing that I have noticed in general, is foot exhaustion. Sometimes I feel like I have ran a 35 mile marathon, and that I need endless foot massage. All in all, so far, not real good. Going to my pain doc tomorrow and will also meet my ABBOTT rep there. In hindsight, I really wish I had more good days during the trial of my DRG. I had only 3 improved days; days 7-10, and then, the doc had to remove the DRG due to risk of infection. I wish I had more good sample days!!! I am praying, of course, as my nerves in the lumbar DRG area heal, I will improve. So far, not really worth doing. Saddens me beyond belief. Thank God for Kratom. I just sent my Kratom company a "love letter." I do not know what I would do without that product, and may advocate for Kratom. What the hell! Gotta put my energy into something positive!!! Maybe some chocolate chip icecream, too. Love to each of you, Lori Renee

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lorirenee1 | @lorirenee1 | Aug 14, 2020
In reply to @jimhd "@lorirenee1 Oh, how very sorry I am that the DRG isn't living up to its expectations,..." + (show)
@jimhd

@lorirenee1

Oh, how very sorry I am that the DRG isn't living up to its expectations, Lori. It's really hard, after a person has tried a medication or procedure or implant, to begin feeling some relief, only to have it lose its effectiveness. So disappointing.

Knowing you, I'm fairly sure you'll give the DRG a shot, at least until the time that you've been told it could still start doing its job. I'm kinda hanging in there until I recover from back surgery, to see if my scs will resume its work. The surgeon doing the spinal stenosis decompression is also the doctor who would move forward with other treatments, including - a big Maybe - the DRG implant. I really appreciate you keeping us posted. It's certainly going to be a factor in making the decision to do it or not do it.

I haven't read past your initial post from this morning, Thursday, so I don't know yet how others have responded. I don't want to be out of line in expressing my concern for your mental state. You know as well as anyone how pain and depression/anxiety can feed each other. I feel tears in the back of my eyes, thinking about all that you're going through right now. You have my sincere empathy, Lori. Know that I'll be praying every day for you, along with a bunch of other fellow warriors.

Jim

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@jimhd Hi Jim. So many things to say to you. First, for your support. Just knowing you are there, understanding, thinking of how to help me. Your sensitivity, as you have been so close to suicide, to know that my mood is bleak. How could it not be? I find I am feeling tears in my eyes all of the time, reading about all of us. I get so saddened, as illness just happens, and there is so little for neurological diseases in general. But, at least, we are here for eachother. Sometimes I can barely read my fellow warriors' posts. I find myself crying for everyone. I do know if I can help you make a decision about the DRG, then it has done one good thing. I am hoping that your SCS resumes it's work after your surgery. Time will tell. You are one crazy, hard working warrior guy. That is for sure. But working helps you so much. I have a feeling it drives all kinds of demons away. Anyway, thank you, thank you, thank you. I hope your wife is well, too. Love, Lori Renee

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lorirenee1 | @lorirenee1 | Aug 14, 2020
In reply to @rwinney "Guys - I want you to know...I just ate some cherry vanilla ice cream and my..." + (show)
@rwinney

Guys - I want you to know...I just ate some cherry vanilla ice cream and my endorphins are flowing! 🍨
Cheers, Lori and all that wish to cheat a little today!! 🤗

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Oh God, Rachel, chocolate chip ice cream with hot fudge, from Oberweis Dairy is often my back up, pain plan. I do not keep it in the house, or I would weigh one million pounds. However, I drive over there, hobble inside with my mask on, and get it!!! I do think it works way better than Gabapentin, Duloxetine, Medical Marijuana, and a few others....and yes, endorphins are raised, for sure. I swear by it. Love to you, Rachel, and I am glad you ate that ice cream!!!! Lori Renee

REPLY
1 reply
lorirenee1 | @lorirenee1 | Aug 14, 2020
In reply to @rwinney "@lorirenee1Yes ma'am, I keep pushing these legs and am making slow, steady progress which pleases me...." + (show)
@rwinney

@lorirenee1Yes ma'am, I keep pushing these legs and am making slow, steady progress which pleases me. The hike (walking trail) really opened my eyes and inspired me. I won't give up and I know you won't either my friend. Good luck at your Sept 1st appointment. I'm keeping hope alive for you! 💕
Best wishes and strength,
Rachel

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@rwinney, Oh, Rachel! The thought of you, and progress, makes me so delighted. No one works harder than you to fight this damn illness. You just keep it up. Keep it up, keep it up. I am best when walking, so I walk. Sitting is a bitch. At least I will keep my legs strong walking. My best to you, and you are something else!!!!! Love, Lori Renee

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 14, 2020
In reply to @lorirenee1 "Oh God, Rachel, chocolate chip ice cream with hot fudge, from Oberweis Dairy is often my..." + (show)
@lorirenee1

Oh God, Rachel, chocolate chip ice cream with hot fudge, from Oberweis Dairy is often my back up, pain plan. I do not keep it in the house, or I would weigh one million pounds. However, I drive over there, hobble inside with my mask on, and get it!!! I do think it works way better than Gabapentin, Duloxetine, Medical Marijuana, and a few others....and yes, endorphins are raised, for sure. I swear by it. Love to you, Rachel, and I am glad you ate that ice cream!!!! Lori Renee

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@lorirenee1 😃😄😁

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Mentor
Jim, Volunteer Mentor | @jimhd | Aug 14, 2020
In reply to @lorirenee1 "@rwinney, Oh, Rachel! The thought of you, and progress, makes me so delighted. No one works..." + (show)
@lorirenee1

@rwinney, Oh, Rachel! The thought of you, and progress, makes me so delighted. No one works harder than you to fight this damn illness. You just keep it up. Keep it up, keep it up. I am best when walking, so I walk. Sitting is a bitch. At least I will keep my legs strong walking. My best to you, and you are something else!!!!! Love, Lori Renee

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@rwinney @lorirenee1

Pain seems to be lower for me when I'm moving around, too. It's a strange thing. One would think that walking would make it worse. There's a limit to how far I can walk, though. There comes a time when my feet start complaining, especially if I'm walking on hard surfaces.

Do you raise your feet above your head and heart? I lie with my feet on a pillow sometimes, but that can make them hurt more. My therapist suggested elevating my feet, if possible like a tilt table. It's kind of hard to do it in bed with a blanket lifter. I'm glad you've found a few helpful coping ideas.

Jim

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1 reply
lorirenee1 | @lorirenee1 | Aug 15, 2020
In reply to @jimhd "@rwinney @lorirenee1 Pain seems to be lower for me when I'm moving around, too. It's a..." + (show)
@jimhd

@rwinney @lorirenee1

Pain seems to be lower for me when I'm moving around, too. It's a strange thing. One would think that walking would make it worse. There's a limit to how far I can walk, though. There comes a time when my feet start complaining, especially if I'm walking on hard surfaces.

Do you raise your feet above your head and heart? I lie with my feet on a pillow sometimes, but that can make them hurt more. My therapist suggested elevating my feet, if possible like a tilt table. It's kind of hard to do it in bed with a blanket lifter. I'm glad you've found a few helpful coping ideas.

Jim

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@jimhd Hi Jim, We are the same in that moving/walking helps us. But we also have complaining feet when we walk too much. For me, I walk about twice, maybe three times around my block, and then my feet give out. At that point, I need to keep them elevated on the couch. I always keep my feet up on pillows, and need to try that up the wall Yoga position that @artscaping (Chris) has described. Just everything revolves around the feet. Unimaginable. Brings me to tears, and to Oberweis Dairy, for ice cream. Whatever helps the stress! Lori Renee

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sunnyflower | @sunnyflower | Aug 24, 2020
In reply to @lorirenee1 "@jesfactsmon Awww, Hank, your kindness is just the best. It's like you know what I need!..." + (show)
@lorirenee1

@jesfactsmon Awww, Hank, your kindness is just the best. It's like you know what I need! Yes, this is a very trying time for me, as I really thought that the DRG would improve my life. I still hope it does, and pray that my nerves will totally heal from surgery, and respond to the electricity in the way I had hoped. As I write, my legs are lifted on the couch, as I cannot put my feet on the ground without terrible pain starting. Somehow, leg elevation helps. At least I have this trick! Everyone here is searching for something to work. Everyone here deserves joy, and a normal life. Sometimes I get so sad reading about all of us, that it almost enhances the pain. I think I am a true empath, and I am not always sure if this is good or bad. Life can suddenly just turn. I do lose hope, and I have, deep down, a very happy, funny, spirit. Even family stops asking. I think illness can make our loved ones very uncomfortable after awhile. You are really strong, Hank, to listen to all of this. Maybe it is these deeper sharing that really connects us as human beings. I know the deep suffering here. I know how each of us try to cope with a really unbearable illness. I know God. I pray all of the time. Getting carried away here, but thanks so much. You are a gem, and Linda is a lucky lady to have you. Lori Renee

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Hi Lori, wow, almost everything you said I can relate to and experience myself. My husband has called me an empath since he met me 29 years ago! I didn't even know what that meant at the time LOL! He always watches sci-fi so I thought it was a characteristic the aliens on his shows! It is so funny I was just thinking how sad it makes me to read everyone's story also, because I cannot bear the thought of anyone suffering! But yet I am so thankful for the blog because it helps me know how to pray better and reminds me to pray. I've come to the conclusion that pain or the degree of pain or the types of pain we are in, and most of us have many types and pretty intense degrees, that others who do not experience this can't understand it. They can see us come and go from the doctor and Hospital, even the ambulance and in wheelchairs, they know we're in bed with ice and heat at the same time in different parts of our body they can see it on their faces and in some cases we have had to ask them to adjust their expectations of us and told them how sorry we are that we cannot be there for them because of our physical limitations yet, if we have a smile on our face, the world thinks were doing fine. Or, on the rare occasions we put on makeup and have a smile for sure people think we are better than ever. If they only knew. I've never belonged to a support group like this where people can understand my pain and it really has meant the world to me which is a gross understatement. I am deeply grateful for the warm caring and supportive group All of You Are. I wish many, many blessings to each one of you. In Christ's unfathomable love, Sunny flower

REPLY
1 reply
lorirenee1 | @lorirenee1 | Aug 25, 2020
In reply to @sunnyflower "Hi Lori, wow, almost everything you said I can relate to and experience myself. My husband..." + (show)
@sunnyflower

Hi Lori, wow, almost everything you said I can relate to and experience myself. My husband has called me an empath since he met me 29 years ago! I didn't even know what that meant at the time LOL! He always watches sci-fi so I thought it was a characteristic the aliens on his shows! It is so funny I was just thinking how sad it makes me to read everyone's story also, because I cannot bear the thought of anyone suffering! But yet I am so thankful for the blog because it helps me know how to pray better and reminds me to pray. I've come to the conclusion that pain or the degree of pain or the types of pain we are in, and most of us have many types and pretty intense degrees, that others who do not experience this can't understand it. They can see us come and go from the doctor and Hospital, even the ambulance and in wheelchairs, they know we're in bed with ice and heat at the same time in different parts of our body they can see it on their faces and in some cases we have had to ask them to adjust their expectations of us and told them how sorry we are that we cannot be there for them because of our physical limitations yet, if we have a smile on our face, the world thinks were doing fine. Or, on the rare occasions we put on makeup and have a smile for sure people think we are better than ever. If they only knew. I've never belonged to a support group like this where people can understand my pain and it really has meant the world to me which is a gross understatement. I am deeply grateful for the warm caring and supportive group All of You Are. I wish many, many blessings to each one of you. In Christ's unfathomable love, Sunny flower

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@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

REPLY
2 replies
lorirenee1 | @lorirenee1 | Aug 25, 2020
In reply to @lorirenee1 "@sunnyflower Hi, Sunny, Even your name reflects your kindness! When I first read it, I thought..." + (show)
@lorirenee1

@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

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Hi to all my Neuropathy Warriors here! In the midst of awful pain, I just called my DRG ABBOTT rep, to remind him that I have an appt with my Pain Doc next Tuesday. He was happy that I have at least 20% pain relief, that the DRG is doing something, and that more adjustments would help, most likely. I told him, "From your mouth, to God's ears......" God, this is not easy. But the guy has experience with this darn machine, and maybe it will help still. Crossing my fingers, as I can't for the life of me, cross my toes. Love to every one of you!!! Lori Renee

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 25, 2020
In reply to @lorirenee1 "Hi to all my Neuropathy Warriors here! In the midst of awful pain, I just called..." + (show)
@lorirenee1

Hi to all my Neuropathy Warriors here! In the midst of awful pain, I just called my DRG ABBOTT rep, to remind him that I have an appt with my Pain Doc next Tuesday. He was happy that I have at least 20% pain relief, that the DRG is doing something, and that more adjustments would help, most likely. I told him, "From your mouth, to God's ears......" God, this is not easy. But the guy has experience with this darn machine, and maybe it will help still. Crossing my fingers, as I can't for the life of me, cross my toes. Love to every one of you!!! Lori Renee

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@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. 👍🏻

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