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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.

GailBL, Alumni Mentor | @gailb | Jul 5, 2018
In reply to @lynearn "My 59 year old daughter has Complex Regional Pain Syndrome. I ask her to have her..." + (show)
@lynearn

My 59 year old daughter has Complex Regional Pain Syndrome. I ask her to have her doctor send a request to the Mayo Clinic in Jacksonville, Fl. Instead of have her pain doctor send her request, she asked her primary care doctor (who knows NOTHING about CRPS to send her records to Mayo. As a result her application was rejected. (She has had her meds cut about 1/3 & is in horrific pain. he was afraid that if she asked her pain doctor for the referral, he would no longer treat her!. I told her that she has every right for a second opinion! My question is how do I get her to be seen by a Mayo doctor?

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@lynearn

Welcome to Mayo Connect. I'm a Volunteer Mentor with Mayo Connect and not a medical professional. I can't offer medical diagnosis or medical solutions, but I do offer my experience, knowledge, and support for members of the community. I'm sorry to hear about your daughter's CRPS.

To answer how to get an appointment with Mayo Clinic, look at the top of the screen to the right. Next to the edge is a box that reads: REQUEST APPOINTMENT. Click on the button, and follow the instructions. If you have a problem, please let me know and we'll find another way to contact them. Also, your daughter can request her medical records from her doctor's office herself. Then she can take or mail them to Mayo.

It's usually faster to get your physician (pain doctor, or PCP) to make a referral to Mayo. However, I had a situation where I needed my dermatologist to send my biopsy report to the Mayo Clinic in Rochester. She put off doing it for so long I had to call her several times about it. She finally, reluctantly mailed the results. Mayo scheduled me for basal cell skin cancer surgery the week after receiving my records. I needed skin grafting on my face and Mayo was the only place I trusted to do it. So, they apparently know how to deal with reluctant doctors.

I hope you get an appointment so your daughter can find some relief for her pain.

Gail
Volunteer Mentor

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sdemaria | @sdemaria | Jul 5, 2018

Hello, my name is Shirley and I suffer from chronic pain. I'd like to thank you for the invite and hope to find new solutions and support.

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1 reply
tiger4250 | @tiger4250 | Jul 5, 2018
In reply to @tiger4250 "Hi. My name is Darlene and I’v Had chronic back pain since my 1st back surgery..." + (show)
@tiger4250

Hi. My name is Darlene and I’v Had chronic back pain since my 1st back surgery in 2012. I was fused from L1-L5 for my 1st surgery. I had suffered with back pain from my early 20’s and I was 57 for my first surgery. I had scoliosis, stenosis and several other problems. I was put on prescription drugs for pain in February 2013, seeing a pain management doctor who tested me for everything.
With generic testing I was found to be an ultra rapid metabulizer. So my pain meds are limited after being tried on just about everything. I had a herniated disc in March 2017, so additional surgery to extend my fusion to S1. Since every doctor wants you off opioids I’m in the process of getting a spinal cord pain stimulator. I’m so afraid it will not work because I have pain that now seems to be SI joints. I think I need a second opinion. My pain is constant from my lumbar spine down my butt, to both hips. My left leg randomly goes to sleep with pins and needles. I don’t know what to do. They only did the MRI for my lumbar spine and did not go down to my SI joints.
Any suggestions on where to go next?

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Thank you for replying. I have thought about a pain pump. Because I really don’t see how a pain stimulator is going to help my pain. And you are so right about pharmacies treating me like a druggy. I’v Had to have my regular pharmacy call another pharmacy so I can get a refill of my pain medication. It’s terrible how they treat people.
I go to the pain doctor this Monday and will be asking more questions since I just got surgical clearance.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 5, 2018
In reply to @sdemaria "Hello, my name is Shirley and I suffer from chronic pain. I'd like to thank you..." + (show)
@sdemaria

Hello, my name is Shirley and I suffer from chronic pain. I'd like to thank you for the invite and hope to find new solutions and support.

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Welcome, Shirley @sdemaria. We look forward to getting to know you. Can you tell us a bit more about the type or cause of your pain and how you are currently managing your pain?

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sdemaria | @sdemaria | Jul 5, 2018

Hello, I have myelitis in my arms where it came from, well?????? I think maybe bextra and, or viox doc. prescribe for me back in early 2000's. Plus I have severe stenosis in my neck and lumbar issues as well. My pain is managed by doing hardly anything and muscle relaxer and pain meds. when I can get!!!! I've had 4 operations to try in get better, some have helped and some made it worse!!! Tks

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1 reply
Stephen | @wsh66 | Jul 5, 2018
In reply to @tiger4250 "Hi. My name is Darlene and I’v Had chronic back pain since my 1st back surgery..." + (show)
@tiger4250

Hi. My name is Darlene and I’v Had chronic back pain since my 1st back surgery in 2012. I was fused from L1-L5 for my 1st surgery. I had suffered with back pain from my early 20’s and I was 57 for my first surgery. I had scoliosis, stenosis and several other problems. I was put on prescription drugs for pain in February 2013, seeing a pain management doctor who tested me for everything.
With generic testing I was found to be an ultra rapid metabulizer. So my pain meds are limited after being tried on just about everything. I had a herniated disc in March 2017, so additional surgery to extend my fusion to S1. Since every doctor wants you off opioids I’m in the process of getting a spinal cord pain stimulator. I’m so afraid it will not work because I have pain that now seems to be SI joints. I think I need a second opinion. My pain is constant from my lumbar spine down my butt, to both hips. My left leg randomly goes to sleep with pins and needles. I don’t know what to do. They only did the MRI for my lumbar spine and did not go down to my SI joints.
Any suggestions on where to go next?

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Good luck

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suelle50 | @suelle50 | Jul 5, 2018

Hi, I'm glad to find this group. I suffer from chronic pain in my back and neck. I have stenosis, degenerative disc disease and severe arthritis all down my spine. I had 2 back surgeries one fusion which left me worse off so I don't want to get a neck fusion. I take pain meds on a daily basis.

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5 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 5, 2018
In reply to @suelle50 "Hi, I'm glad to find this group. I suffer from chronic pain in my back and..." + (show)
@suelle50

Hi, I'm glad to find this group. I suffer from chronic pain in my back and neck. I have stenosis, degenerative disc disease and severe arthritis all down my spine. I had 2 back surgeries one fusion which left me worse off so I don't want to get a neck fusion. I take pain meds on a daily basis.

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Welcome to Connect @suelle50, thank you for sharing a little bit about yourself. Have you heard of or tried Active Release Technique (ART)? I'm tagging one of our Volunteer Mentors Gail @gailb who has discussed ART in a post to see if she can offer some suggestions.

John

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 5, 2018
In reply to @suelle50 "Hi, I'm glad to find this group. I suffer from chronic pain in my back and..." + (show)
@suelle50

Hi, I'm glad to find this group. I suffer from chronic pain in my back and neck. I have stenosis, degenerative disc disease and severe arthritis all down my spine. I had 2 back surgeries one fusion which left me worse off so I don't want to get a neck fusion. I take pain meds on a daily basis.

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Hi @suelle50, I add my welcome. You may also be interested in these discussions on Connect:
- Chronic Back Pain for Years https://connect.mayoclinic.org/discussion/chronic-pain-for-years/
- Surgical solutions to chronic cervical/back pain https://connect.mayoclinic.org/discussion/surgical-solutions-to-chronic-cervicalback-pain/

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lioness | @lioness | Jul 5, 2018
In reply to @suelle50 "Hi, I'm glad to find this group. I suffer from chronic pain in my back and..." + (show)
@suelle50

Hi, I'm glad to find this group. I suffer from chronic pain in my back and neck. I have stenosis, degenerative disc disease and severe arthritis all down my spine. I had 2 back surgeries one fusion which left me worse off so I don't want to get a neck fusion. I take pain meds on a daily basis.

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@suelle50 Welcome I'm lioness and feel for all your pain I too have back problems L2fracture I refused surgery ,bulging disc and loads of arthritis in my back , back is a wreck from falling on ice I also have fibromyalgia ,you,'ll learn alot of tricks in this group to help you cold

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