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.

@sueinmn

Oh my, that is not the "Medtronic Model" of patient care. You are going to need to be your own advocate to get the service and care you need.

It is the responsibility of their tech to help you get the machine set up and operating optimally. Please contact her, and work your way up through their customer service to get the help you need. They may need to assign a next-level technician if this is not the usual use of the device. If necessary, get your doctor involved.

Do you have contact information for the technician? If not, look into the material they gave you about the device to find it.
Sue

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I have had several meetings w/ the thech and the doctor. The results have not been noteworthy.

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Hi all... I have atypical trigeminal neuralgia and fibromyalgia, as well as depression and anxiety disorders. I've been on disability for many years. I'm in my 40's and I live on the west coast . I rode the opiate roller-coaster ride all the way thru rehab (a couple of times) and am currently begrudgingly and not effectively treating my pain with suboxone and deep breathing, the finest Western medicine has to offer.... Lol....may add some crystals and sage burning to round out my medical care... the system is so very broken

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In reply to @kenc "I have." + (show)
@kenc

It’s a very common complaint usually due to nerve damage and tissue healing and takes time to heal. My surgical site where they took hip bone plug for spine fusion in 1990 bothered me more than the actual surgical site on back and for a few years afterward. Patients

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Jim. 66. Was healthy and strong. Always very physically fit and never overweight. Was diagnosed with non-length dependent small fiber neuropathy about 11 years ago after various symptoms started showing up. It’s gotten worse and worse over the years. I’ve “tried it all” to no avail. It’s only by the grace of God that I haven’t killed myself.

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@bogeydune

Hi all... I have atypical trigeminal neuralgia and fibromyalgia, as well as depression and anxiety disorders. I've been on disability for many years. I'm in my 40's and I live on the west coast . I rode the opiate roller-coaster ride all the way thru rehab (a couple of times) and am currently begrudgingly and not effectively treating my pain with suboxone and deep breathing, the finest Western medicine has to offer.... Lol....may add some crystals and sage burning to round out my medical care... the system is so very broken

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@bogeydune Hello and welcome to Connect. I couldn't agree with you more about the traditional western medical system. It's structured more towards acute situations versus setting folks up to live with chronic pain and symptoms through holistic mind/body approach.

I'm sorry you've had a rough go, riding the opiate roller-coaster stinks, but I hope you're proud that you are no longer taking opioids.

It's a difficult reckoning that at the end of the day most pills and treatments are really just temporary band-aids and as you say, "not effectively treating your pain".

Have you explored a pain rehabilitation approach like the Mayo Clinic Pain Rehabilitation Center offers?

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@jemock

Jim. 66. Was healthy and strong. Always very physically fit and never overweight. Was diagnosed with non-length dependent small fiber neuropathy about 11 years ago after various symptoms started showing up. It’s gotten worse and worse over the years. I’ve “tried it all” to no avail. It’s only by the grace of God that I haven’t killed myself.

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Hey there Jim @jemock. I have empathy for your long journey with neuropathy, you are not alone. Coming to Connect hopefully offers supportive encouragement.

I read that you experience a plethora of symptoms. That certainly takes a toll if you aren't equipped with coping mechanisms and tools to manage.

You may be interested in learning about central sensitization syndrome and how it can be responsible for central nervous system dysfunction. Are you familiar with CSS?

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Thanks for your reply. I am very vaguely acquainted with it.

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Hi, I am Janice and I have had back problem all my life. As a child I had scoliosis on my upper back. Now I have scoliosis on my whole back including the tail bone. I also have stenosis and several ruptured and protruding disks. I am in constant pain. I tried everything except surgery for metal pieces to be put in my back They can’t be sure I will not be in as much pain as I am now. Has anyone had this same problem?

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Hi I’m Joanne. I’ve got CRPS (since 2007), RA, fibromyalgia, pudendal neuralgia, had 2 full knee replacements, a back fusion, & lots more back problems like herniated discs. When you list it all it looks ridiculous, like you can’t actually have so many things going on. I’m on too much medication although I did get off opiates, but much more to figure out how to manage. I’ve become increasingly more & more depressed. At times think about inpatient treatment but nothing I’ve found so far feels right.🤷🏼‍♀️ So that’s me.

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@janicecarter

Hi, I am Janice and I have had back problem all my life. As a child I had scoliosis on my upper back. Now I have scoliosis on my whole back including the tail bone. I also have stenosis and several ruptured and protruding disks. I am in constant pain. I tried everything except surgery for metal pieces to be put in my back They can’t be sure I will not be in as much pain as I am now. Has anyone had this same problem?

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@janicecarter Hello Janice, welcome to Connect. Thank you for sharing your story. Although I don't share your specific diagnoses, I do share living in chronic pain.
Understandably, having surgery that does not guarantee significant pain reduction can be a risk. Have you considered surgery as an option? On the other hand, might you consider a pain rehabilitation program which offers pain management strategies and coping mechanisms as a different approach?

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