Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for scampano3 @scampano3

Thank you for your response, "jimiwho" (what shall I call you?)! I know I'm not alone. What's more disturbing is that, as much pain as I'm in, there seem to be people a lot younger than me who are suffering even more, if that's possible. I see my surgeon on Friday. He has been a God-send, but after this last surgery, which put me in worse condition, he doesn't have any answers. He is sending me to UCSF for a consult. I live in the SF Bay Area, so driving up to UCSF in downtown San Francisco is doable. I also plan to go to the Stanford Neuroscience Health Center to see if they have any ideas. Yes, I am a vet, and my former classmates and service mates are still in touch and very concerned that I may give up. I lost my baby brother to PTSD-related suicide, so I could not and would not do that to my loving family. I have people to talk to but very little distractions. It's just too painful to leave the house! I read, draw and bought a guitar to try to teach myself how to play it. I sincerely appreciate the response, my friend. As a US Army Airborne Ranger, I will NEVER QUIT. It's just not in my DNA. The fight is definitely getting tougher, so I posted on this site hoping someone could recommend a "miracle"!

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@scampano3 Hi! When I had been told by ALL medical professionals locally that I shd no longer go on walks as I wd fall and it would kill me but cd SIT outside it was destructive to me. I did ask a neurologist to go over my entire spine on MRI i understood. I said NO! He told me nit to expect help in churches or from friends or library or out in nature. Really health-attuned professionsls. He did tell me there was only one thing: A Miracle! Ge said he had seen them but rarely. He pointed hard on his chest and said I had to find my miracle, inside me.

I still dont believe what he said. If I had thise ladt few yrs over again I wd have looked inside me and gone back to walking which I cant do today more than moments. I woukd recognise that jn each of ys there is a stength of which we may not be aware. Just as i gave my strengths/talents/gifts to otgers and listen to them i found partd of me a lost. I am still in pain but walk w canes and rollators and found advice from those I know believe in me as I have in them. Believe in yourself and go back in time to what gave you strength in hard times of your life. We all have that as that is how we survive. I have lived in horrible chronic pain since my 20s. Drs didnt believe how bad until they performed surgery and were shocked, “Never seen it so bad in any surgery! Dont know how you stand, walk, raise your famiky, wirk! So bad and your oain must be horrible!” I couldnt give ip who i love or what. Alternatives. Asked for help. Changed drs. Therapy. Tears. A rescued dog. Resigned i cd not live as i used to. Moved. New friends for life. As you, i lost to suicide a person closest in my life. Gave up from pains of life….and times whennit seems my only hope to stop pain I realize i cd not do that to my loved ones. They are my answers. So is finding things in nature and wanting to learn more about life, making a new friend often by accident. I fight to survive each day. I am hopeful fir you. Dig deep and look around to see if there is something lost you can find. Maybe reunite. Change again if new hobbie or interests. We all need each other whatever suffers us. Write again and tell me how I can fibd that miracle is the pain owns me. Help me too. Visit u in 2026!

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Profile picture for jimiwho @jimiwho

@scampano3 Hi! When I had been told by ALL medical professionals locally that I shd no longer go on walks as I wd fall and it would kill me but cd SIT outside it was destructive to me. I did ask a neurologist to go over my entire spine on MRI i understood. I said NO! He told me nit to expect help in churches or from friends or library or out in nature. Really health-attuned professionsls. He did tell me there was only one thing: A Miracle! Ge said he had seen them but rarely. He pointed hard on his chest and said I had to find my miracle, inside me.

I still dont believe what he said. If I had thise ladt few yrs over again I wd have looked inside me and gone back to walking which I cant do today more than moments. I woukd recognise that jn each of ys there is a stength of which we may not be aware. Just as i gave my strengths/talents/gifts to otgers and listen to them i found partd of me a lost. I am still in pain but walk w canes and rollators and found advice from those I know believe in me as I have in them. Believe in yourself and go back in time to what gave you strength in hard times of your life. We all have that as that is how we survive. I have lived in horrible chronic pain since my 20s. Drs didnt believe how bad until they performed surgery and were shocked, “Never seen it so bad in any surgery! Dont know how you stand, walk, raise your famiky, wirk! So bad and your oain must be horrible!” I couldnt give ip who i love or what. Alternatives. Asked for help. Changed drs. Therapy. Tears. A rescued dog. Resigned i cd not live as i used to. Moved. New friends for life. As you, i lost to suicide a person closest in my life. Gave up from pains of life….and times whennit seems my only hope to stop pain I realize i cd not do that to my loved ones. They are my answers. So is finding things in nature and wanting to learn more about life, making a new friend often by accident. I fight to survive each day. I am hopeful fir you. Dig deep and look around to see if there is something lost you can find. Maybe reunite. Change again if new hobbie or interests. We all need each other whatever suffers us. Write again and tell me how I can fibd that miracle is the pain owns me. Help me too. Visit u in 2026!

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@jimiwho inam 78! I dont see myself the way ithers see me. Perhaps you need a better vision of your gifts as you dont feel them!

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Profile picture for adam0730 @adam0730

Hello my name is Adam
I am 60 yrs old and have lived with chronic pain now for at least 25 of those years totally untreated and unmedicated.last 1.5 yrs on pain meds now but they only make it bearable most days . Now my hands are seeming to just lock up like a slow bee sting almost weird just another day and a new pain lol
Just hate complaining and Perhaps I am looking for new ideas, support ?who knows maybe I am here to support ?
Happy NewYear

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@adam0730
Hi Adam, I find wearing compression gloves while I'm sleeping makes all the difference with my hands; mine lock up, too, without the gloves. Mine are simple, I think a spandex and polyester mix, washable, and affordable. Wishing you health and RELIEF!!,
Debra

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Profile picture for scampano3 @scampano3

Hi! My name is Steve. I am an Army veteran (West Point Class of '82). Powerlifter for 25 years. As of 8/25/25, I've had twelve spinal surgeries, including L3-S1 fusion, C4-T1 fusion, and NEVRO spinal cord stimulator (now removed). I am now 65 years old. My first surgery was after a deadlifting incident in 2011, at which time I found out that I have severe degenerative disc disease and arthritis. Suffering from severe chronic pain in my neck, low back, buttocks, sides of legs, and both feet (progressively worsening neuropathy in both). Riding a stationary bike temporarily helps the low back pain, but walking increases the pain. Taking 3 each 7.5mg Percocet, along with 3600mg Gabapentin, a day, which temporarily reduce pain from a 9/10 to a 7/10. Pain in excruciating most of the time, but it is worse when I wake up in the morning (probably a 10/10, but I hate to even suggest that!), even with a new, top-of-the-line Tempur-Pedic mattress. Not sure what else to do, but I will never give up on trying to get better! Even my Orthopedic surgeon is scratching his head at this point! I am not a crier, but even this pain has me in tears almost every morning! Any suggestions? I'll try anything at this point.

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@scampano3 I am so glad to hear your positive spirit of not giving up. I am sort of in the same boat, but I am quite a bit older at 78(how did that sneak up on me?). I was in excellent health right up to my most recent lapse in 2021. I have tried just about everything, too. Sounds like the spinal cord stimulator did not work out. Mine worked quite well for about two and a half years, then it suddenly just stopped working. I had a pain pump implanted in 2023. The trial dropped my pain from about an 8 down to a 2. The permanent implant has not given me any relief yet, except for one day. I am in the process of having the output increased until I reach a therapeutic level(I hope). This may be an option for you. I have read that it has a 94% success rate. Keep on keeping on.

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Hello , my name is Kerry , and I am the mother and caregiver of my daughter , Priscilla , who has been afflicted with complex regional pain since 2021 , when she was 25 . She may also have Ehlers-Danlos Syndrome . We have tried every doctor , every kind of medication and therapy and nothing has helped . The only thing that ever helped was a combination of morphine and ketamine in the emergency room a few years ago . The ketamine by itself didn't help . She is now in a wheelchair , afraid to go out for fear that people will stare at her for being so young and in a wheelchair . Has anyone else found any relief for their pain ? Please let me know , I'm desperate for help . Thank you .

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Profile picture for heisenberg34 @heisenberg34

@scampano3 I am so glad to hear your positive spirit of not giving up. I am sort of in the same boat, but I am quite a bit older at 78(how did that sneak up on me?). I was in excellent health right up to my most recent lapse in 2021. I have tried just about everything, too. Sounds like the spinal cord stimulator did not work out. Mine worked quite well for about two and a half years, then it suddenly just stopped working. I had a pain pump implanted in 2023. The trial dropped my pain from about an 8 down to a 2. The permanent implant has not given me any relief yet, except for one day. I am in the process of having the output increased until I reach a therapeutic level(I hope). This may be an option for you. I have read that it has a 94% success rate. Keep on keeping on.

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@heisenberg34 I was told that I was too young and active a few years ago when I inquired about the pain pump. I'm 65 now and can't walk a 1/4 mile without significant pain. I used to spend 2-3 hours a day in the gym. I cancelled my membership 10 years ago. I can ride 2-2.5 miles a day on my stationary bike. That's it! I assume the pain pump is a morphine drip. My questions are, with all of that morphine in your body, can you carry on normal daily activities? Can you feel it in your system? Can you still drive a car? How does it affect you? Where is the pump located? What happens if you need an MRI? Thanks for responding, my friend!

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Profile picture for jimiwho @jimiwho

@jimiwho inam 78! I dont see myself the way ithers see me. Perhaps you need a better vision of your gifts as you dont feel them!

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@jimiwho Prior to my initial back injury, and then my neck, I used to spend 2-3 hours/day in the gym lifting very heavy weights. I know what I used to feel like and look like. I always used to feel half my age. Now, I feel older than my age and have gained an extra 40 pounds, yet people still see me as a healthy guy who still works out! I see myself as an overweight senior citizen who can barely walk around the block and is not allowed to lift more than 10 pounds. I have a grandson who loves to spend time with me, but after a day with him, I'm in bed for a week! I do need a better vision of myself. I just don't know how to get there. The first step is to lose that extra 40 lbs! Then, maybe, my "vision" will improve!

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Profile picture for jimiwho @jimiwho

@scampano3 Hi! When I had been told by ALL medical professionals locally that I shd no longer go on walks as I wd fall and it would kill me but cd SIT outside it was destructive to me. I did ask a neurologist to go over my entire spine on MRI i understood. I said NO! He told me nit to expect help in churches or from friends or library or out in nature. Really health-attuned professionsls. He did tell me there was only one thing: A Miracle! Ge said he had seen them but rarely. He pointed hard on his chest and said I had to find my miracle, inside me.

I still dont believe what he said. If I had thise ladt few yrs over again I wd have looked inside me and gone back to walking which I cant do today more than moments. I woukd recognise that jn each of ys there is a stength of which we may not be aware. Just as i gave my strengths/talents/gifts to otgers and listen to them i found partd of me a lost. I am still in pain but walk w canes and rollators and found advice from those I know believe in me as I have in them. Believe in yourself and go back in time to what gave you strength in hard times of your life. We all have that as that is how we survive. I have lived in horrible chronic pain since my 20s. Drs didnt believe how bad until they performed surgery and were shocked, “Never seen it so bad in any surgery! Dont know how you stand, walk, raise your famiky, wirk! So bad and your oain must be horrible!” I couldnt give ip who i love or what. Alternatives. Asked for help. Changed drs. Therapy. Tears. A rescued dog. Resigned i cd not live as i used to. Moved. New friends for life. As you, i lost to suicide a person closest in my life. Gave up from pains of life….and times whennit seems my only hope to stop pain I realize i cd not do that to my loved ones. They are my answers. So is finding things in nature and wanting to learn more about life, making a new friend often by accident. I fight to survive each day. I am hopeful fir you. Dig deep and look around to see if there is something lost you can find. Maybe reunite. Change again if new hobbie or interests. We all need each other whatever suffers us. Write again and tell me how I can fibd that miracle is the pain owns me. Help me too. Visit u in 2026!

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@jimiwho I'll keep in touch, for sure. I'm not sure if you're religious. I was born and raised in NJ in a strict Italian Catholic household. I've turned to the Bible, which I now read every day. I pray multiple times/day. I am asking Heaven for a miracle. In the meantime, losing weight and riding a stationary bike every day are how I plan to lift myself out of the rut I'm stuck in. I'll keep you posted. Please write anytime. Thanks!

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Profile picture for scampano3 @scampano3

@heisenberg34 I was told that I was too young and active a few years ago when I inquired about the pain pump. I'm 65 now and can't walk a 1/4 mile without significant pain. I used to spend 2-3 hours a day in the gym. I cancelled my membership 10 years ago. I can ride 2-2.5 miles a day on my stationary bike. That's it! I assume the pain pump is a morphine drip. My questions are, with all of that morphine in your body, can you carry on normal daily activities? Can you feel it in your system? Can you still drive a car? How does it affect you? Where is the pump located? What happens if you need an MRI? Thanks for responding, my friend!

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@scampano3 Excellent questions! I got my pump at age 74. I had tried just about everything else. I tried morphine in my first trial...nothing. Then about two weeks later I did the trial with hydromorphone(both by injection). Within five minutes my pain dropped from about a 7.5 down to a 2. It was great. Naturally, I went ahead with the permanent implant almost three years ago. The amount of drug is quite small, and it is within the intrathecal space, so it doesn't pass the blood/brain barrier. You can do pretty much anything. Just have to be careful of the pump which is just under the skin in your abdomen. So, sumo wrestling is out of the question, lol. I am not aware of the drug in my system. I have had several MRIs. The facility just has to have the right scanner.
Now, let me share a few things. I have had exactly one day of pain relief since the implant. I have been told that my initial dosage was very low. So, it has taken a really long time to reach a near-therapeutic level. I am currently at 2.3 mg per 24 hours. I have talked with other pumpers here on the blog who also took a very long time to reach a therapeutic level(pain relief). Others have said that they had to have a pump output of close to 5 mg/24 hours. I had one day about two months ago after having the pump dosage increased. Nothing since. Seems crazy, right? The pain pump has a success rate of about 94%. Doesn't mean you will get 100% relief, but I would gladly settle for 50% relief at this point. I developed neuropathy on top of my usual lower back pain about a year ago. It has rendered me incapable of doing much of anything... walking, bike riding, forget about it! I hope I have answered your questions. Feel free to reach out any time, amigo. Happy New Year!

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Profile picture for joannef20 @joannef20

Hi Kelsey, I’m new to this group, just wanted to say hello to everyone

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It is so good to hear you have your little buddy with you joanne. Glad you do. I now have 2 patio hummingbird feeder. I luv watching them. It's definitely a smile-maker improvement. Like you so clearly put it "pain is exhausting". We hear ya.

Enjoying the good momemts in life when you have them. We just can not predict the next enjoyable treat. We store these in our heads for reminding ourselves of them in the - in betweeny times. Keep on with that great spirit of yours. Thanks for chatting here.

@joannef20

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