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

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?

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

@kanaazpereira I would be happy to respond but other than migraines about 4 days a month I have not had chronic pain. Even while waiting for a liver transplant I was amazingly well on the outside which may possibly be why it took the local doctor so long to diagnose me. There really is no excuse for that though.
JK

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

Thank You John for your kind reply. I have tried both CBD oil and vaporizing. The oil helps me with anxiey when pain and fear grip me to my core but the THC only works if I am really high which I do not care for. Losing my cognative ablities is a side effect that is problematic. My partner had to do everything for me because I could not think. It does have its place I think. It can be better than some dark alternatives. I hope you are doing well your self. Again, thank you for your reply.
Kristine

The only insights I have learned from struggling with IP is that there needs to be continuity of care and a team approach. I can not do this alone if I am to survive this. I have a case worker, a weekly therapist, a pain specialist, and have done DBT in the past. All these people help me but I have to organize it and show up which seems like a full time job. I think a little humor helps too. Sometimes laughing is better than crying.

@pinkpain51, I completely agree: finding humor in the midst of our stressful lives makes us more resilient; almost disengages us from our fears. Keep laughing and keep talking; we're listening.

@pinkpain51

I'm terribly sorry for the level of suffering you experience. Pain is such a hard thing to cope with. I've been living with burning pain in my feet from peripheral neuropathy for the past several years, and the fact that it never stops is difficult to describe to someone who's never had it.

I think that I could deal with the neuropathy pain more easily if it weren't accompanied by mental pain. One writer called it a "brain storm". In my own experience, suicidal ideation has been the most difficult side effect to handle. I know it's not a very socially acceptable topic of conversation, but it's no less real by ignoring it. I've attempted a number of times, and as you said, it appears to be the most rational solution to our pain at times. Again, those who haven't been there probably can't understand.

When I'm using my rational mind, I see things differently, of course. I think of the pain it would cause my wife who's stuck by my side for 45 years. I think of my two little granddaughters, one who's 4, and the other just 2 months old. I wouldn't get to watch them grow up and they wouldn't have a grandpa. My wife would have to sell the home we own because she couldn't take care of the place. I've done a huge amount of landscaping, and we have 10 acres of pasture. I spend 6 hours a day all summer working outside, either in the yard, or painting one of the buildings, or trapping ground squirrels and gophers, and the list never ends. I just have to work through the pain. My wife loves our home, and I feel a profound sense of guilt when I think of her being forced to leave it.

Well, I need to take my opioids and rub Lidocaine cream on my feet and Voltaren cream on my arthritic hands, and go to sleep so I can get up for church in the morning. I do have that to look forward to, and thanks to some meds and my CPAP, I usually sleep well. I'm thankful for that.

I'll be thinking of you, Kristine, and praying for you.

Jim

@pinkpain51 I am sorry for your suffering and I appreciate your openness at expressing the trials you have been through. Dealing with constant pain is probably one of the most difficult things any of us will ever have to do. Often the medical community seems to lack an understanding of what we deal with, but we need to remember they are constantly inundated with people who are suffering and they can find it difficult to deal with. Modern medicine lacks the basic instruments for measuring an individuals pain as well as lacking in the tools to stop or reduce the pain as you have found out.
I am a retired social worker and I have dealt with the suicidal a lot. I know when you are standing on the edge of a bridge trying to encourage someone not to take the last step of their lives it is hard to find the correct words to help them. Over the years I found that telling the truth is best even if it is not the ideal thing to say. I acknowledge their right to end things and try to remind them that it is always available to them as long as they do not use it. Once used you can not get a do over. But if you keep it you can always call on it if all else fails. Of course you never know what is right around the corner or coming the next day.
One of the pains I deal with is sciatic pain which I find quite painful when it hits. At first I though it was part of the phantom pain from loosing my leg, but years later I realized it was from a different cause. For 40+ years I never found a treatment that would help this pain until, by chance, I was talking to a neurologists about a different condition and asked him if he knew a treatment. He pulled up my old MRI and asked if I had tried muscle relaxants? I had the medicine, but never used it for that condition so I tried it and it helped. The purpose of this story is to point out that the answer can be just around the corner all you need to do is ask.
That does not solve most of my pain, but it does help with one. And your answer can be there also, of course you can use the final option, no one can really stop you, but remember to save it for the last day.
As you correctly point out it is not you who will suffer from being gone as much as those we leave behind. It also opens a door way that they may try to use when life gets hard. They will remember that you used it so they will feel it is OK for them to do so. We need to make sure they understand that those who use the final option have researched all other answers and only used it when there was nothing... absolutely no other way. I personally support the right to assisted death for those with chronic, but untreatable conditions, still I believe it should be only used when everything else has failed.
Pain is a unique and individual thing that seems to vary form person to person. I heard of one person who had bone cancer, which I am told is very painful, and did not know it until 3 weeks before he died of it. Another person I know of had a brother with cancer of the spine and suffered greatly until he died. Then his brother felt he had identical symptoms and since he did not want to suffer like his brother ended his life. I advised him to be very sure of what he had, before he took the final option, if that was his choice, I pray he was right.
I will pray for you, good luck. 19lin

@pinkpain51 I am so sorry to hear what horrible pain you have to live with. I cannot imagine having to go through this. The closest I can relate to it is the migraine pain I suffered with for years. My migraines generally lasted 3 to 4 days and as I lay in bed I envisioned jumping out the bathroom window and landing on my head, but that was nothing compared to your daily pain.
I hope and pray that somehow, someone can find something that will help you with this.
JK