1. < Chronic Pain

Do any group members have Intractable Pain IP and/or anyone have a Medtronic pain pump

Posted by PinkPain51 @pinkpain51, May 12, 2017

I was diagnosed with Fibromyalgia at the age of 37 and also had severe bone pain. About 2 years ago at the age of 51 the pain got so bad that I was having a hard time coping with getting out of bed or sitting in a chair for more than 5 minutes due to stabbing pain in my upper right back and increasing bone pain. I found out that I had 5 discs that were severely damaged. I was fused and the surgeon said I had Osteoporosis in my thoracic spine and the bones were crumbling. The fusion didn't take and I deal with pain levels I never thought a human could live with. I tried commiting suicide about a year ago and shock therapy gave me back a will to live. I currently take opiods to be able to do basic self car, pt, and go for walks as far as I can. My quality life is very poor but I need to be here for my loved ones. I am considering a pain pump from Medtronic and wondering if anyone has had one put in and if it has worked. I am also interested in anyone's experience with this type of unrelenting severe pain and how they deal with it. So far I eat a anti-inflamatory diet, take forteo shots for Osteoporosis, do PT, and move as much as I can. I also see a therapist weekly.I have tried Marijuana, accupunture, lyrica, Cymbalta, Biofeedback, DBT, and many other treatments, to numberous to mention here. The opiods help but I do not like the side effects or the stigma.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

JK | @contentandwell | May 16, 2017

@jimhd we lived in Salem before moving to Bedford. I am happy for you that your daughter will be moving closer to "home". I sure wish my son in Hermosa Beach would come back but he is enamored with the weather in CA. I suspect at some point he will move away from there though due to the high cost of real estate.
Yes, the drive to Grand Canyon would be very long, much longer than I want to do! We are joining our son in Hawaii in the fall and I had hoped to go through Arizona so we could see Grand Canyon but it turns out that larger airports are four hours from Grand Canyon so it is not feasible for two days. The flights to Hawaii will leave me totally spent though. I plan to have a free day when we arrive so I can just rest up for the rest of the vacation.
JK

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | May 16, 2017
In reply to @kanaazpereira "Hello @pinkpain51, Welcome to Connect; I'm so sorry that you are experiencing such pain, but so..." + (show)
@kanaazpereira

Hello @pinkpain51,

Welcome to Connect; I'm so sorry that you are experiencing such pain, but so glad that you've joined this group. And thank you for sharing your history, responding to posts in other discussions, and thinking of others, even though you are in pain.

I'm tagging Connect Mentors, @dawn_giacabazi, @sandytoes14, @johnbishop who are familiar with chronic pain, and I'm certain they will join in with some suggestions to help you.
@mikee @gailb @jenapower @virtuous69 @tompet @contentandwell @briansr @mojoearle @sharonmay7 @medic7054 @salena54 @19lin @jimhd would you be able to share your experiences and insights as well?

@pinkpain51, I would sincerely encourage you to view this information about Mayo Clinic's Pain Rehabilitation Center (PRC), which has been in operation since 1974, and has helped thousands of people with chronic pain.
I hope @medic7054, who has experienced the benefits of the PRC will return with more information.

@peggyj4411 @philio66 @pamperthyself have discussed the Medtronic pain pump, and I wonder what their thoughts are about the device?

@pinkpain51, I applaud you for finding your will to live life fully despite your struggles; we have to advocate for our health, and sometimes have to rely on prescription opioids to provide relief. I realize your worry, especially with the current opioid epidemic; what is your doctor's opinion?

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@contentandwell

JK,

I suppose you used the word "guilt" somewhat figuratively, but when I read it, I was reminded of what a therapist told me: Jim, you're carrying around way too much guilt, and most of it is undeserved.

Being made aware of that, I've worked on knowing the difference between deserved and undeserved.

Jim

REPLY
PinkPain51 | @pinkpain51 | May 16, 2017
In reply to @johnbishop "Hello @pinkpain51 - Thank you for sharing your story. I know it must be a daily..." + (show)
@johnbishop

Hello @pinkpain51 - Thank you for sharing your story. I know it must be a daily struggle for you with the pain. I'm hoping the others that have been tagged will be able to share their experience with a pain pump. Last month I went to a neuropathy support group meeting that had a doctor speaking on medical cannabis and chronic pain. We had one Minnesota Neuropathy Association member that has used it for chronic pain with good results. If it's available where you live it might be worth looking into. There are only 2 labs in Minnesota authorized to grow the plant and extract the oil to use for chronic pain. The doctor giving the presentation helped put Minnesota's legislature create a plan to make it available to patients with chronic pain. Here is a link to their website - https://leaflinelabs.com/our-medicine/

Hoping for some answers for you. Stay strong and keep asking questions to find a solution that works for you.

John

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I am so glad you were able to take such an amazing trip. I dream of being able to do such things. Positive thoughts help more than negative but sometimes our bodies demand attention. I love the outdoors and hope you get to have a good summer. I planted flowers the other day and had some hummingbirds come to my feeder finally. Hummingbirds inspire me. They are so small but so determined to gaurd their syrup source that they will dive bomb any size bird. They are fearless and I can learn from that. Thank you for sharing:)

REPLY
JK | @contentandwell | May 16, 2017
In reply to @kanaazpereira "Hello @pinkpain51, Welcome to Connect; I'm so sorry that you are experiencing such pain, but so..." + (show)
@kanaazpereira

Hello @pinkpain51,

Welcome to Connect; I'm so sorry that you are experiencing such pain, but so glad that you've joined this group. And thank you for sharing your history, responding to posts in other discussions, and thinking of others, even though you are in pain.

I'm tagging Connect Mentors, @dawn_giacabazi, @sandytoes14, @johnbishop who are familiar with chronic pain, and I'm certain they will join in with some suggestions to help you.
@mikee @gailb @jenapower @virtuous69 @tompet @contentandwell @briansr @mojoearle @sharonmay7 @medic7054 @salena54 @19lin @jimhd would you be able to share your experiences and insights as well?

@pinkpain51, I would sincerely encourage you to view this information about Mayo Clinic's Pain Rehabilitation Center (PRC), which has been in operation since 1974, and has helped thousands of people with chronic pain.
I hope @medic7054, who has experienced the benefits of the PRC will return with more information.

@peggyj4411 @philio66 @pamperthyself have discussed the Medtronic pain pump, and I wonder what their thoughts are about the device?

@pinkpain51, I applaud you for finding your will to live life fully despite your struggles; we have to advocate for our health, and sometimes have to rely on prescription opioids to provide relief. I realize your worry, especially with the current opioid epidemic; what is your doctor's opinion?

Jump to this post

@jimhd, no, not figuratively, but I like the way you have expressed it, it is definitely undeserved. I really do try to be a good person. It's funny, once a couple of years ago I said to my daughter (33 at the time), kidding, that I thought my doctor thought I was a nicer person than I am. Her eyes got like saucers and she said to me you are a good person, how could you think that? From her that made me feel good.

I did not cause the tragedy that took someone's life. I did of course benefit from it and sometimes I just feel so bad that there is a family out there grieving when I am celebrating, all due to the same cause.
Thank you for your words of wisdom, I will keep them in mind.
JK

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | May 17, 2017
In reply to @kanaazpereira "Hello @pinkpain51, Welcome to Connect; I'm so sorry that you are experiencing such pain, but so..." + (show)
@kanaazpereira

Hello @pinkpain51,

Welcome to Connect; I'm so sorry that you are experiencing such pain, but so glad that you've joined this group. And thank you for sharing your history, responding to posts in other discussions, and thinking of others, even though you are in pain.

I'm tagging Connect Mentors, @dawn_giacabazi, @sandytoes14, @johnbishop who are familiar with chronic pain, and I'm certain they will join in with some suggestions to help you.
@mikee @gailb @jenapower @virtuous69 @tompet @contentandwell @briansr @mojoearle @sharonmay7 @medic7054 @salena54 @19lin @jimhd would you be able to share your experiences and insights as well?

@pinkpain51, I would sincerely encourage you to view this information about Mayo Clinic's Pain Rehabilitation Center (PRC), which has been in operation since 1974, and has helped thousands of people with chronic pain.
I hope @medic7054, who has experienced the benefits of the PRC will return with more information.

@peggyj4411 @philio66 @pamperthyself have discussed the Medtronic pain pump, and I wonder what their thoughts are about the device?

@pinkpain51, I applaud you for finding your will to live life fully despite your struggles; we have to advocate for our health, and sometimes have to rely on prescription opioids to provide relief. I realize your worry, especially with the current opioid epidemic; what is your doctor's opinion?

Jump to this post

@contentandwell

JK, I'm certain that the donor's family's grief was - the only word that comes to mind is - assuaged, knowing that they were able to give a gift to you that was a blessing and a lifesaver.

Jim

REPLY
JK | @contentandwell | May 17, 2017
In reply to @kanaazpereira "Hello @pinkpain51, Welcome to Connect; I'm so sorry that you are experiencing such pain, but so..." + (show)
@kanaazpereira

Hello @pinkpain51,

Welcome to Connect; I'm so sorry that you are experiencing such pain, but so glad that you've joined this group. And thank you for sharing your history, responding to posts in other discussions, and thinking of others, even though you are in pain.

I'm tagging Connect Mentors, @dawn_giacabazi, @sandytoes14, @johnbishop who are familiar with chronic pain, and I'm certain they will join in with some suggestions to help you.
@mikee @gailb @jenapower @virtuous69 @tompet @contentandwell @briansr @mojoearle @sharonmay7 @medic7054 @salena54 @19lin @jimhd would you be able to share your experiences and insights as well?

@pinkpain51, I would sincerely encourage you to view this information about Mayo Clinic's Pain Rehabilitation Center (PRC), which has been in operation since 1974, and has helped thousands of people with chronic pain.
I hope @medic7054, who has experienced the benefits of the PRC will return with more information.

@peggyj4411 @philio66 @pamperthyself have discussed the Medtronic pain pump, and I wonder what their thoughts are about the device?

@pinkpain51, I applaud you for finding your will to live life fully despite your struggles; we have to advocate for our health, and sometimes have to rely on prescription opioids to provide relief. I realize your worry, especially with the current opioid epidemic; what is your doctor's opinion?

Jump to this post

@jimhd, I have heard that, and also that it helps knowing that a part of their loved one lives on. I told my son and daughter that, both of whom are so grateful that I am alive, and asked that as a mother's day gift to me they sign up as organ donors, realizing how much it meant to them, that they could "pay it forward". My son has responded and is about to do that. My daughter has not commented, but then that is typical of her. She could have already done it and not mentioned it.
JK

REPLY
junemac7 | @junemac7 | Aug 17, 2021
In reply to @kanaazpereira "Hello @pinkpain51, Welcome to Connect; I'm so sorry that you are experiencing such pain, but so..." + (show)
@kanaazpereira

Hello @pinkpain51,

Welcome to Connect; I'm so sorry that you are experiencing such pain, but so glad that you've joined this group. And thank you for sharing your history, responding to posts in other discussions, and thinking of others, even though you are in pain.

I'm tagging Connect Mentors, @dawn_giacabazi, @sandytoes14, @johnbishop who are familiar with chronic pain, and I'm certain they will join in with some suggestions to help you.
@mikee @gailb @jenapower @virtuous69 @tompet @contentandwell @briansr @mojoearle @sharonmay7 @medic7054 @salena54 @19lin @jimhd would you be able to share your experiences and insights as well?

@pinkpain51, I would sincerely encourage you to view this information about Mayo Clinic's Pain Rehabilitation Center (PRC), which has been in operation since 1974, and has helped thousands of people with chronic pain.
I hope @medic7054, who has experienced the benefits of the PRC will return with more information.

@peggyj4411 @philio66 @pamperthyself have discussed the Medtronic pain pump, and I wonder what their thoughts are about the device?

@pinkpain51, I applaud you for finding your will to live life fully despite your struggles; we have to advocate for our health, and sometimes have to rely on prescription opioids to provide relief. I realize your worry, especially with the current opioid epidemic; what is your doctor's opinion?

Jump to this post

I had a Medtronic pain pump put in eight months ago and at first I thought it was so great but the past few months I've been having more pain and I have no extra meds to take as needed. When I was taking oxy orally I could take a couple at once and get over the severe pain. Then I would just skip my next dose.Now I feel there's nothing I can do.
Hi moved up to New York and now I'm having trouble finding somewhere to refill my meds. It's terrible.

REPLY
1 reply
Amanda Roe | @amandajro | Aug 20, 2021
In reply to @junemac7 "I had a Medtronic pain pump put in eight months ago and at first I thought..." + (show)
@junemac7

I had a Medtronic pain pump put in eight months ago and at first I thought it was so great but the past few months I've been having more pain and I have no extra meds to take as needed. When I was taking oxy orally I could take a couple at once and get over the severe pain. Then I would just skip my next dose.Now I feel there's nothing I can do.
Hi moved up to New York and now I'm having trouble finding somewhere to refill my meds. It's terrible.

Jump to this post

Hello @junemac7 and welcome to Mayo Clinic Connect. I am sorry you are going through this with your pump. I wonder if your doctor who performed your surgery would be able to help refer you to someone closer to where you are living now? Have you tried asking them?

REPLY
janniesue | @janniesue | Sep 29, 2022
In reply to @pinkpain51 "Thank you so much for the kind replies. My doctors is not as concerned about the..." + (show)
@pinkpain51

Thank you so much for the kind replies. My doctors is not as concerned about the opiods as she is concerned with my pain levels. I am coping but when the pain stays over a 10 for longer than 4 days I start to become suicidal. All I can do is lay in bed shake and pray to die. I am so suprised that people are not more aware of this kind of suffering. This pain became unmanageable after rods started to work their way out of my spine. My thoracic was literally hanging off the rods. They removed them, the fusion failed, and I told them in the hospital that I couldn't survive this. I never recovered. I tried everything under the sun while trying to survive. I did not use opiods until I tried to kill myself and was saved by shock therapy that brought back my will to live. I live with pain levels that stay about an 8 with opiods. As I had mentioned in previous post my quality of life is poor. I understand the drawback of these drugs but I don't know what you do with this. I stay on a lower dose because I know they don't work over time. I never knew people could survive this kind of agony. My docter feels that the pain pump was made for people like me. I have tried meditation, cognative approaches, marijuana, gabepentin, cymbalta, so on and so forth. The drugs ware off and I am back to the very scary place of feeling I am dying from agony yet I keep on living. I wonder why so few speak of Intractable Pain and wonder how many people out there suffer and commit suicide becaues they could not express their agony. I started with Fybromyalgia and lived with chronic pain for years. This is worse than I could ever imagine. I pray god helps all who suffer like this. They say Osteoporosis is a silent killer but I have found it to be horrible. My spine is literally crumbling and all my long bones hurt like they are broken. The only way I can describe it is like when I broke my leg when I was young but it is all over my body. I feel bad to put this in writing but I feel so alone in this and I used to be a very well respected teacher and therapist. Now I am limited to a bed and four walls I spend far to much time looking at. This person I hardly recognize. I hang on because people love me and I am a fighter. I have changed everything from what I put into my mouth to what I put on my body. I have researched IP for any other clues to what I should do. If anyone out there knows anything about this I am all ears. God bless all who suffer silently.
Kristine

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I am 6 weeks out from my Medtronic pump.. my pain is awful! I don't know why it isn't working unless my doctor has my dosage wrong. My pain pump trial was just an injection which was great but bc I'm currently half my oral meds but the pain is so significant it's mind boggling! I'm beginning to lose faith in my pain doctor.. I know what you mean suicidal! Intense pain makes you brain crazy! I wish I could go to Mayo Clinic! My pain doctor only did a small adjustment 1x then sent me off for almost 4weeks! Very disappointed but then Florida has turned into just a money making opportunity for the doctors down here! Feel like a $ instead of a medical patient so choose your doctor wisely!
I had 75%-100% with trial injection but barely manage 25% relief with this stupid pump & only using the boluses!
Wish you well honey! It's awful along with all the stupid DEA thinking we're all addicts & job security.
My shrink has me on THC which is very helpful but only keeps me from a complete mental blow out!
Medicine has once again taken a dark turn.. I'm 73 yo woman..

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 29, 2022
In reply to @janniesue "I am 6 weeks out from my Medtronic pump.. my pain is awful! I don't know..." + (show)
@janniesue

I am 6 weeks out from my Medtronic pump.. my pain is awful! I don't know why it isn't working unless my doctor has my dosage wrong. My pain pump trial was just an injection which was great but bc I'm currently half my oral meds but the pain is so significant it's mind boggling! I'm beginning to lose faith in my pain doctor.. I know what you mean suicidal! Intense pain makes you brain crazy! I wish I could go to Mayo Clinic! My pain doctor only did a small adjustment 1x then sent me off for almost 4weeks! Very disappointed but then Florida has turned into just a money making opportunity for the doctors down here! Feel like a $ instead of a medical patient so choose your doctor wisely!
I had 75%-100% with trial injection but barely manage 25% relief with this stupid pump & only using the boluses!
Wish you well honey! It's awful along with all the stupid DEA thinking we're all addicts & job security.
My shrink has me on THC which is very helpful but only keeps me from a complete mental blow out!
Medicine has once again taken a dark turn.. I'm 73 yo woman..

Jump to this post

Welcome @janniesue, So sorry to hear the Medtronic pain pump isn't providing any relief for you, especially after the pain pump trial injection worked so well. Maybe it's like you mentioned. It might just need an adjustment for the medication it's putting out. Do you have a phone number for the Medtronic folks that you can call? Have you told your doctor it doesn't work?

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