1. < Chronic Pain

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.

tiger4250 | @tiger4250 | Jul 4, 2018

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?

REPLY
6 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 4, 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?

Jump to this post

Hello @tiger4250 -- Welcome to Connect. It sounds like you have a lot on your plate to deal with. Connect is a good place to ask questions and learn what others with similar health concerns are doing for treatments. I have no experience with a spinal cord pain stimulator but I'm tagging several members have discussed the stimulators in their posts. @lisab62, @jimhd, @pamperthyself, @patch can you offer any suggestions for Darlene @tiger4250 ?

Darlene, I would seek a second opinion if you have any concerns about it.

John

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 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?

Jump to this post

Hello @tiger4250

I believe that a second opinion is always a good idea. Ask the doctors you talk to if any of their patients have had the same type of spinal problems you have had and what their pain-control experience has been after the stimulator was implanted. Are you going to have this done at a large medical facility that does a lot of these procedures? Remember that the doctor's experience is also a factor.

I look forward to hearing about your decision making process.

Teresa

REPLY
tiger4250 | @tiger4250 | Jul 4, 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?

Jump to this post

Thank you for your response. I truly believe a second opinion is needed in this procedure. My insurance will pay for a second opinion. I had all my surgeries in Ohio before moving back to my home state of Florida. I have bilateral knee replacements, right hip replacement and had two back surgeries. I have been through a lot. I guess my 1st step is to ask my PCP for a referral to a neurosurgeon. That is who did both my back surgeries. I feel they are the best qualified to do these surgeries. I will call them tomorrow and get a referral. Thank you for helping me make this decision.
Darlene

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 4, 2018
In reply to @jcherry "Hi Kelsey.. My name is Janet and have suffered from fibromyalgia for 24 years and CRPS..." + (show)
@jcherry

Hi Kelsey.. My name is Janet and have suffered from fibromyalgia for 24 years and CRPS (RSD) for 18-19 years. I also suffer with migraines and chronic back pain. I look forward to meeting my fellow chronic pain members,and wish we were all on here for other reasons

Jump to this post

Hi @jcherry and @mamasitalucita
I'm wondering if you've seen the fibromyalgia discussions here:
- fibromyalgia pain https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/
- What Distracts You From the Pain? https://connect.mayoclinic.org/discussion/what-distracts-you-from-the-pain/

REPLY
Parus | @parus | Jul 4, 2018
In reply to @jupiterkaren "Florida is cracking down on opiate prescriptions at the suffering of the chronic pain patients. My..." + (show)
@jupiterkaren

Florida is cracking down on opiate prescriptions at the suffering of the chronic pain patients. My husband was given a 3 day supply from his pain management specialist to last him until when?...no one is here while he screams in pain through the evening. The shots they gave him provided no relief, he had a shoulder surgery which 7 months later hasn't gotten him out of the pain at all. Very upsetting that people unfamiliar with chronic pain are dictating how someone should be pain free. We wouldn't allow a pet to suffer this way. Change is necessary. We are frustrated, exhausted, worn out, and sadly my husband is in pain as we do not have alternatives to the shots which seems to be the only thing the pain Dr. I'd offering. I am defeated.

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Keeping this in my thoughts. Nearly always it is the innocent that suffer the consequences of the ignorant.

REPLY
cognac | @cognac | Jul 4, 2018

@lifetime, you've been on my mind. And especially today, thank you for keeping America free. I hope you've found something for your pain, better help from your doctors, and the VA Hospital in general. Take care of yourself, and remember you are not forgotten. @cognac

REPLY
1 reply
lioness | @lioness | Jul 4, 2018
In reply to @cognac "@lifetime, you've been on my mind. And especially today, thank you for keeping America free. I..." + (show)
@cognac

@lifetime, you've been on my mind. And especially today, thank you for keeping America free. I hope you've found something for your pain, better help from your doctors, and the VA Hospital in general. Take care of yourself, and remember you are not forgotten. @cognac

Jump to this post

@lifetime glad to hear from you through cognac Thank you for your service and hope you are getting more information on your problems have a happy 4,th

REPLY
Mamacita, Alumna Mentor | @mamacita | Jul 4, 2018
In reply to @jcherry "Hi Kelsey.. My name is Janet and have suffered from fibromyalgia for 24 years and CRPS..." + (show)
@jcherry

Hi Kelsey.. My name is Janet and have suffered from fibromyalgia for 24 years and CRPS (RSD) for 18-19 years. I also suffer with migraines and chronic back pain. I look forward to meeting my fellow chronic pain members,and wish we were all on here for other reasons

Jump to this post

Hi there, @colleenyoung. This is Mamacitalucita. Thank you for the Fibromyalgia link. I can't wait to read the information and see how it compares to what I have tried. Until next time, Mamacita

REPLY
Stephen | @wsh66 | Jul 4, 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?

Jump to this post

if your considering a simulator and it turns out to not the answer ask about a pain pump. I have one and it's a life saver. Yes I still have pain but it is manageable. When you've lived with pain that is beyond bearable and you've considered taking the final step, you realize that there is a lot you can live with. I have a small pump surgically implanted in my tummy. I get 2.75 mgs. of Dilaudid every 24 hours, plus .9 mgs. that I can trigger in 10, .09 mgs. doses every 24 hours via a remote control. All the drug every s are in my pump. I go to MHealth every 3 to 4 months to have the pump refilled. No more trying to get prescriptions filled. No more doctors and nurses treating you like a criminal because they think you are a "drug seeker". I have my life back and most of my day is pain free. I can exercise again. I got mine at MHealth in MPLS. MN. Dr. Park at the pain clinic is the guy to see. Even if you want to explore other therapies, there is no better place than the MHealth Pain Clinic. Good luck, Love and Blessings

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