Chronic Back Pain for Years

Posted by jlfisher56 @jlfisher56, May 2, 2017

6 back surgeries (extensive cervical and lumbar fusions) with neurological complications. Left with chronic pain. Accident happened in Nursing career 1992 and worked with first fusions until 1999 (failed fusions). At my age, and as a former nurse educator, I never wanted to had to rely on medication/s for the severe pain. Having thoroughly exhausted exploring sites using non-pharmaceutical methods, using psychological methods, biofeedback, trying to accept my limitations, i.e., I still believe somewhere…out there…is hope. The strong medicine has caused gastroparesis, further complicating my health problems. They are too numerous to write and I will not focus on them. I am looking for “help” and guidance. If I can be of assistance to anyone throughout their trials, (perhaps similar to some of what I have gone through), I will.

When my doc told me I needed back surgery I had trouble finding any patient to talk to. Due to the privacy laws my surgeon could not connect me with any of his previous patients. It was frustrating. Once I had my surgery, I began keeping a diary with my notes on what to expect, what I needed at the hospital, what mobility tools would have helped, what exercises were most effective and so forth. I just launched this book on Amazon, and I it will be free next weekend (Sunday and Monday – July 9 and July 10). I want to give a shout here so people can bookmark the book at get it for free – I wish I had this information before my surgery! The book name is “Step by Step Back Surgery. A Recovery Guide: What your doctor can’t tell you” by Kady Dash.

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At first I had to look at your name because I thought at first I wrote your letter. I am 71 and have been in chronic pain for years. Mainly with my back.

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Only 3 surgeries for me lower back. Including double spinal fusion of L5S1. Now have Verticore Lift. Also have anerve block every 4 months at local hospaital.. .see you in toronto at NABC

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I am Marie (marield65) and can connect with most of you with 5 back surgeries and just had a knee replacement and all I know is pain, and how it has robbed my life.
BUT I wrote a long letter to all of you, in pain,laying down with my iPad and pushed some buttons that I wasn’t supposed to and the 2 letters I wrote are somewhere in space and I can’t retrieve them. I am tired now but I will be back with my story because I want some feedback on a 2nd fusion the Dr. wants to do.
I will write back. Sorry I lost my letters.
Hi Mickey, hi Jeff. From Marie

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Hi jlfisher56, I’m Juliann. I certainly understand your frustration. I am 52 years old and have been in since I was 16. I have had 7 spine surgeries with extensive fusion, rods, and screws in both my neck and lower back. I’ve also had 23 surgeries overall. I use a Fentanyl patch for my chronic pain. It really helps. It keeps me from having to take my morphine on a daily basis. Now I only need my morphine about once a month, which is amazing for me. I also take Robaxin, a muscle relaxer, for all the leg cramps I get. My story is very long; my therapist thinks I should write a book about my 37-year journey in pain. I’ve had some strange and really horrible experiences with doctors over the years. Hang in there, once you get on the right medication, it makes a world of difference.

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@marield65

I am Marie (marield65) and can connect with most of you with 5 back surgeries and just had a knee replacement and all I know is pain, and how it has robbed my life.
BUT I wrote a long letter to all of you, in pain,laying down with my iPad and pushed some buttons that I wasn’t supposed to and the 2 letters I wrote are somewhere in space and I can’t retrieve them. I am tired now but I will be back with my story because I want some feedback on a 2nd fusion the Dr. wants to do.
I will write back. Sorry I lost my letters.
Hi Mickey, hi Jeff. From Marie

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Hi Marie, I’m Juliann. Your words, “all I know is pain, and how it has robbed my life,” really struck a chord with me. I’ve been in pain for 37 years, and suffer from treatment resistant depression and PTSD. I’ve been on anti-depressants most of my life, and until lately, they did nothing for me. But after getting on the right medication and getting a part-time job, I’m doing much better. I still struggle with how pain and doctors and robbed my life from me. I do see a therapist once a month and it helps a lot. I do use a Fentanyl patch for my pain, maybe it would help you too. Please hang in there, life can get better.

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hi my name is jessie i had lumbar fusion 1999 and been in pain since did everything possible i csnt tske it anymore im alone no one to care for me

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Hi to my friends Juliann,robeaver, Jessie. My name isMarie and I already met Juliann. I want to tell Jessie that I am your friend. You are not alone, now you have this group to give you support and hope.
I have been there. I am a young 71 year old and whatever you or some one else had, I had it. I think I was born under a black cloud but then I think of what I do have in my life and count my blessings.
Eventually I will tell more about myself but right now I think you need some positive attention.
Things will not always be this bad. Tell me something about your self and what you do to occupy your time. You can’t spend the day thinking about your pain because that will make it worse. Who do you have in your life that you can talk to? And you can always write to us.
When you are down, open your door and smell the air. It will always be new and fresh and embrace the new and take one day at a time. Don’t even think about tomorrow. “Unless you have a Dr.s appointment ” ha ha don’t forget that.
Talk to me, and thanks for joining the group, it will be your family. I am a newbie also. I joined 1 week ago and I have learned so much.
I hope we can help you and you have to do your part and help us get to know you and your pain.
Marie (marield65)

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@jess1313

hi my name is jessie i had lumbar fusion 1999 and been in pain since did everything possible i csnt tske it anymore im alone no one to care for me

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Jessie, I understand it’s very lonely be having pain. I do have family but they got really sick of dealing with it. Then I end up feeling really guilty. I’m sorry that you’re by yourself I hope that you can find someone to talk to and be friends with that might be kind enough to help you. Even when you do have people around, it’s still a very lonely and isolating.

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@marield65

I am Marie (marield65) and can connect with most of you with 5 back surgeries and just had a knee replacement and all I know is pain, and how it has robbed my life.
BUT I wrote a long letter to all of you, in pain,laying down with my iPad and pushed some buttons that I wasn’t supposed to and the 2 letters I wrote are somewhere in space and I can’t retrieve them. I am tired now but I will be back with my story because I want some feedback on a 2nd fusion the Dr. wants to do.
I will write back. Sorry I lost my letters.
Hi Mickey, hi Jeff. From Marie

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I want to say a quick hello to you and I have been on antidepressants for 45 years. The meds have been improving all the time, thank God.
What part of your body do you put your patch and can you go swimming with it on?
You will see my reply down the bottom to Jessie.

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@jess1313. I hear the desperation in your post. Please let us know more about your situation and what medications you are taking. Are you seeing a doctor now, and what is your diagnosis. There are many things that can help with pain, perhaps you will find both information on some alternatives to what you have tried, and some comraderie here. You say you are alone with no one to care for you. What is your age? You may be able to find assistance through Medicare or another way. There are many resources on this site, and many others who have had experiences similar to yours and can maybe give you new ideas. If nothing else, we are here to hear you and try to help you cope with your reality. Don’t give up! Help us understand your situation. Gail B Ledesma

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hi ive been javing chronic back pain for 18 years after my surgery and seems to be getting worse by age i have no life ive isolated myself habe depression and anxiety now sometimes i evan get crazy thought to harm myself but im not taking the coward way out my son needs me miight have been different if i didnt have my son but why dont dr understand tjeres a reason for pain not just keep giving painkillers and tell u to deal with it im tired and drained

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@jess1313

hi ive been javing chronic back pain for 18 years after my surgery and seems to be getting worse by age i have no life ive isolated myself habe depression and anxiety now sometimes i evan get crazy thought to harm myself but im not taking the coward way out my son needs me miight have been different if i didnt have my son but why dont dr understand tjeres a reason for pain not just keep giving painkillers and tell u to deal with it im tired and drained

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Hi @jess1313, welcome to Connect.
I moved your message to this existing discussion about chronic back pain. Like the members you’ve already met here, many people talk about constant pain affecting their mental health and social life. You notice that several members who are active in the Chronic Pain group also participate in the Mental Health group (https://connect.mayoclinic.org/group/mental-health/). I invite you to follow and take part in both groups.

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@jess1313

hi my name is jessie i had lumbar fusion 1999 and been in pain since did everything possible i csnt tske it anymore im alone no one to care for me

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I second your comments, @jenapower Chronic pain/illness can be incredibly isolating and almost as often misunderstood or misinterpreted by others who encounter the patient struggling with it. My wife suffered from chronic pain from an undiscovered spiral spinal fracture for years before her brain cancer diagnosis. It astounded me how many in our circle of family and friends tossed my wife’s feelings aside as they ‘decided’ what was ‘really’ her problem. I believe it is far too common an occurrence and the impacts can last a long, long time.

Most in my wife’s and my family chalked her chronic pain up to her being a hypochondriac or attention seeker. It was frustrating, angering, and sad for both of us. We did our best to work through our feelings on this, but there was no doubt it was damaging to our relationships with those individuals.

Luckily my wife had the courage of her own convictions to stick with her care plans, etc on her own and with me as her wingman.

It wasn’t until years after her brain cancer diagnosis that some of those people acknowledged her journey through chronic pain — and several never did. Sad for my wife, but sadder for the others.

The isolation breaking is what first drew me here to Connect!

Peace & Strength

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@marield65

I am Marie (marield65) and can connect with most of you with 5 back surgeries and just had a knee replacement and all I know is pain, and how it has robbed my life.
BUT I wrote a long letter to all of you, in pain,laying down with my iPad and pushed some buttons that I wasn’t supposed to and the 2 letters I wrote are somewhere in space and I can’t retrieve them. I am tired now but I will be back with my story because I want some feedback on a 2nd fusion the Dr. wants to do.
I will write back. Sorry I lost my letters.
Hi Mickey, hi Jeff. From Marie

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Hello @marield65 My wife used a fentanol patch for several months towards tge end of her illness. She slternated wearing tgem on her shoulder blades. She also found relief through the use of ABHR suppositories and then the same in a cream applied to her neck or inside of her wrists.

Peace & Strength

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