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.

Hi I'm 4me looking for anatural pain relief for chronic pain.

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@db99mn

Hi. I'm Dean, 42.

I've been a CPS patient for going on 8 years.

First I was diagnosed with DDD, then it was arthritis in my hips. The arthritis grew up my spine and now into my shoulders. Basically, my docs say I have arthritis every where.

I deal with something going on in my left shoulder and arm. I call it snap, crackle, pop. My shoulder grinds anytime I move it. If I reach or extend by a little. It sends jolts down through my elbow and into my fingertips.

I have gone through 4 rounds of land PT and 3 rounds of water PT.

I also have many mental illness. I have bi-polar 2. Dissociation. Diagnosed cognition disorder with extreme depression & anxiety. I have panic/anxiety attacks on the daily from the smallest things.

I am working hard to try and 1. Understand more than what my doctors tell me / willing to tell me. 2. To help myself try to counter the pain I am in daily.

Thank you! <3

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Hi Dean @db99mn, how are you doing today? Thank you for joining Connect. I'm sorry to hear about your chronic diagnoses. You've got a full plate and are wise to try and understand how each problem effects you in order to help counter pain.

By definition chronic means, "persisting for a long time or constantly recurring". Unfortunately, when there is no cure for chronic, treatments focus on symptom relief and management which also should be "persisting and constantly recurring"...a daily lifestyle.

Physical therapy and water therapy (like you're doing), occupational therapy and cognitive behavioral therapy being practiced daily to become part of the pain management tool box. I always liken this to the quote, "it takes a village to raise a child" or "all hands on deck". Living with chronic conditions is no small feat.

What tools have you learned to help you cope and strategize on a daily basis? Have your therapists offered physical, emotional or behavioral strategies? Where would you say you need the most support?

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Hi,
I am a 48 year old lady who fell while ice skating in 2019.I basically put out my arm to stop fall and broke my wrist .I live in Ireland.I broke my wrist but had extreme pain straight away .I have been diagnosed with CRPS of my left arm and have had every treatment possible.Covid delayed a lot of my treatment.I had an Intellis SCS implanted 3 weeks ago.I had no trial .I am trying to find anyone with a similar SCS with arm CRPS .As I am trying to figure out this device Medtronic lady basically left it for me to setup.So just saw this forum and wondered if anyone had similar CRPS of arm and an Intellis SCS.

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Hi, my name is Marina. Recently I was diagnosed with pudendal nerve neuralgia. I would like to connect with patients with this condition. thank you

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@galwaygirl

Hi,
I am a 48 year old lady who fell while ice skating in 2019.I basically put out my arm to stop fall and broke my wrist .I live in Ireland.I broke my wrist but had extreme pain straight away .I have been diagnosed with CRPS of my left arm and have had every treatment possible.Covid delayed a lot of my treatment.I had an Intellis SCS implanted 3 weeks ago.I had no trial .I am trying to find anyone with a similar SCS with arm CRPS .As I am trying to figure out this device Medtronic lady basically left it for me to setup.So just saw this forum and wondered if anyone had similar CRPS of arm and an Intellis SCS.

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Welcome @galwaygirl, There are a few discussions on the Medtronic spinal cord stimulators that might be helpful.

-- Has anyone tried the HF10 Spinal Cord Stimulation Device?:
https://connect.mayoclinic.org/discussion/hf-10-spinal-cord-stimulation-device-relieves-back-and-leg-pain/
-- Spinal cord stimulation: Will Nevro help when Medtronic didn't?:
https://connect.mayoclinic.org/discussion/nevro/
Sorry to hear the Medtronic rep left the device for you to setup. The manufacturer's website might have some helpful information on the setup and use.
-- https://www.medtronic.com/us-en/healthcare-professionals/products/neurological/spinal-cord-stimulation-systems/intellis-platform.html

Have you seen this YouTube video on the stimulator use and setup? https://youtu.be/Xr-lEtiRy4o

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@mgeasland

Hi, my name is Marina. Recently I was diagnosed with pudendal nerve neuralgia. I would like to connect with patients with this condition. thank you

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Welcome Marina @mgeasland, There is a discussion on pudendal nerve neuralgia where you can read through the posts and connect with other members with the condition.

-- Anyone out there diagnosed with Pudendal Neuralgia?:
https://connect.mayoclinic.org/discussion/anyone-out-there-diagnosed-with-pudendal-neuralgia/
Did your doctor suggest any treatment or options?

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@galwaygirl

Hi,
I am a 48 year old lady who fell while ice skating in 2019.I basically put out my arm to stop fall and broke my wrist .I live in Ireland.I broke my wrist but had extreme pain straight away .I have been diagnosed with CRPS of my left arm and have had every treatment possible.Covid delayed a lot of my treatment.I had an Intellis SCS implanted 3 weeks ago.I had no trial .I am trying to find anyone with a similar SCS with arm CRPS .As I am trying to figure out this device Medtronic lady basically left it for me to setup.So just saw this forum and wondered if anyone had similar CRPS of arm and an Intellis SCS.

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

Were you able to have this corrected? If so, how?

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@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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Thanks for reply it good to have a forum to chat. I have no direct contact.I can leave message for her to contact me.But I did think it was not good enough .Will get my gp involved. It all so new for me.I found recovery harder than I thought it would be.They don’t really prepare for how long to recover.Wound site hurts when I drive with 3 young school age kids have to be able to pickups.But have to get husband to do for time being.

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@johnbishop

Welcome @galwaygirl, There are a few discussions on the Medtronic spinal cord stimulators that might be helpful.

-- Has anyone tried the HF10 Spinal Cord Stimulation Device?:
https://connect.mayoclinic.org/discussion/hf-10-spinal-cord-stimulation-device-relieves-back-and-leg-pain/
-- Spinal cord stimulation: Will Nevro help when Medtronic didn't?:
https://connect.mayoclinic.org/discussion/nevro/
Sorry to hear the Medtronic rep left the device for you to setup. The manufacturer's website might have some helpful information on the setup and use.
-- https://www.medtronic.com/us-en/healthcare-professionals/products/neurological/spinal-cord-stimulation-systems/intellis-platform.html

Have you seen this YouTube video on the stimulator use and setup? https://youtu.be/Xr-lEtiRy4o

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Thanks yes have searched the web thoroughly and found all that information.However my questions are really to do with Intensity and speed settings.Like it really hard to figure out where to start.Just thought if had someone else’s experience on Intellis with CRPS arm might get some help.

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