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

Thank you Jim for your kind reply. I understand, I truly do. I have alot to be thankful for as well and try to find the good where I can. People don't want to hear of real suffering. It is a lonely proposition and sometimes it makes me even more lonely when my loved ones, particularly my daughter doesn't really understand. I don't see her on a regular basis so she likes to point out my flaws like repeating things I have already said. I have a good proffesional team and meds that give me moments of reprieve. Many feel that narcotics are not the answer but I would be very open to someone giving me something that works. I wonder why people don't talk about the kind of pain that is not survivable? Who wouldn't be suicidal when you are in so much pain you can't breath or lift your head off a pillow? Even now i have days where it gets that bad in spite of the opiods. It is not 24/7 anymore and I am so grateful but when the drugs where off I am right back there again. I do alot of meditation and work with my PT person on ways to strengthen my body so it doesnt athrophy. It sounds like you are active as well and I think moving is a huge benifit. my damage is in my thoracic so walking is far better than any kind of sitting. I don't really sit. It is suprising to me that we don't have better drugs for pain. I have been researching brain stimulation that interupt pain signals. It is still in trial but I have hope that down the road we can develop better treatments. my suicidal ideations are only present when my pain is absolutely intolerable so the idea that therapy is going to take the pain away is ridiculous but with that said I think it can help with coping. I am glad you have a partner who has stuck by your side and I am hoping for a grandbaby myself. My daughter has been trying and is working with a fertility specialist now. Thank you so much for sharing and that Volteran can work along with other drugs I have found as well. My prayers go out to you and I hope the summer brings brighter days ahead. your understanding helped me today thank you:)
Sincerely,
Kristine

I have heard mixed reviews on the Mayo reabilitation courses. I don't see how it can work when they do not use narcotics for people like me. Without them my pain level is at a 10 plus everyday. Opiods have saved my life. As I mentioned before I have bone pain, a collapsing spine, and a failed 5 level fusion. My pain will not improve and has progressively has gotten worse overtime. One review in particular said that she did fine when she was there with the support but when she left she was right back where she started. I do not think opiods are bad but rather a tool that has helped so far, but with that said I know that tolerance over time is inevitable and I deal with that by going down on my medication for a period of time and going back up. it isn't perfect but it works better than all the other treatments combined. I use multidisciplinary approaches, I look for as many tools as I can to improve my quality of life. My big concern is that the drugs can cause early dimentia and that is why I am considering a pain pump. The brain is left alone and the drugs only work on the pain. I am hopeful to maybe get off all the drugs and just have buvicain in the pump which is a numbing agent. I also tried the electrical stimulator scs and wasn't successful but the medtronic pump trial I did helped. There can be complications with this device so I am still concerned. My pain levels are so high that without something I cannot travel, shower, or do even basic self care all I can do is pray to die. The opiods are not magic but they at least make me able to go to doctor appts. go grocery shopping and take walks which I really love to do. Iam not sure what all Mayo offers but I have exhausted many inneffective treatments and don't want to end up in a setting where I am told that this is in my head or I can get past this with cognative therapy, meditation, group therapy etc., although I believe they help once my pain is at a tolerable level. I just think it is wrong not to accept me just because I am under supervision for opiod therapy. I want to be the best person I can be just like everyone else. I need all the help I can get. People with IP deserve to be treated in a manner that helps their quality of life even if that includes opiod therapy. Not to help this type of suffering with everything we have is inhumane and insensitive. I would not wish this type of suffering on any living thing.

@pinkpain51 to you and to others who are having similar experiences. I applaud your bravery and that you are able to maintain good attitudes despite what you are going through. You really have to be brave. This type of interminable pain is incomprehensible to me, thankfully.
I hope they manage to find some remedies that will give you some relief. Prayers are with you.
JK

@pinkpain51

I see the therapist for depression, PTSD, anxiety disorder, panic attacks and suicidal ideation. I want to talk with him about the pain issue, and ask if I could be helped by seeing a pain psychologist. It would mean 2 hours of driving.

In October of 2015, we drove from our home in central Oregon to visit our daughter in New Hampshire and our son in Indianapolis, a 5 week combination of pleasure seeing our kids and families, and seeing several national parks, and suffering the worst pain I had experienced up until that time. Grand Canyon, the Petrified Forest, Roosevelt National Park, Badlands, Gettysburg, and all points in between were just as beautiful with the pain as they would have without it.

It's certainly true that focusing on the good and positive is therapeutic.

I've been helped by what many people have said in this forum. I've also felt like a wimp reading the stories of those who are living with more pain than I can imagine. If only Eve hadn't given in to the devil's temptation to eat from the one forbidden tree in the garden of other delicious fruit! Little did Eve and Adam know the implications of their act. I guess that ought to be a good lesson for all of us to learn. As Donne wrote, "No man is an island." Sometimes, the little things we do or say cast a long shadow.

Well, I've waxed more philosophical than usual, and it's time to go to an appointment with the speech pathologist to continue digging for the causes and solutions for my esophageal dysmotility.

I hope it's as sunny today where you live as it is here in central Oregon.

Blessings.

Jim

@jimhd, we all have things to bear. I know I too often feel bad that others are dealing with so much more than I am, but I try to not feel guilty. I do try to focus on the good and positive and I thank God multiple times a day that I am still here.

Your trip sounds wonderful. We would love to see the Grand Canyon but I cannot deal with that long a drive, particularly not with my husband driving. He wants to drive, I tell him I will fly and meet him there.

By the way, I am NH! What part does your daughter live in, I am in Bedford, which borders Manchester.
JK

Thank you so much19lin, you understand. Assisted suicide should be an option when there is no relief in sight. So far I have been able to get help when it has been at its worst. Having a psychology degree gives me some insight to what is happening to me psychologically. I know that suicide ruines the lives of the loved ones you leave behind so I try and try to find new ways of coping . Unfortunately when you lose your job, become disabled, and spend every last penny on treatments many alternative treatments are not feasable. I would love to have massage therapy but that is 75 dollars per massage and that cuts into my food budget which also needs to be of the highest quality I can afford. If you get sick in this country you can lose everything including quality care. Medicare dose not cover alternative therapies and I have exhausted my resources on trying such things as accupunture, chinese medicine, homeopathy, chiropractic etc. I try to have courage but some days I am so tired of struggling that I just want this to end. I am a social person and miss interactions with people but my illness often prevents me from keeping plans or if I do being embarassed about my emotional behavior because I am hurting so much. I hope and pray for some breakthroughs for those who suffer. I think we are stigmatized because it is hard for people to understand that some acute pain never lessens and becomes a way of life. I am going ahead with the pump and will keep you posted on how it works for me. My doctor has had good results for many of his patients and I hope I am one of those and can get on with the regular complaints of daily living. I know one thing. If I can get some relief I would like to become some kind of advocate for those who suffer in silence. Thank you for taking the time to respond. I really appreciate it and distraction helps. God bless you and again thank you for your input.
Sincerely,
Kristine

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Thank you JK for responding. I get migraines originating from my spine and they are very painful. 3 or 4 days of agony is alot and I am so glad you have found some relief. I do Imitrex injections and Relpax which I currently can't afford. You are so kind to understand. I feel so alone in this so it is nice when others respond with their experiences. It takes my mind of myself for a moment. I wish you good health and happiness.
Sincerely,
Kristine

@contentedandwell

Our daughter lives in Salem, and until a few months ago, worked at the Moore Center in Manchester. She resigned to have a baby, and in July, will move to California, much closer to us. Her husband is in the Coast Guard, and will be transferred from Boston to Alameda. Small world. It would be a long drive from NH to the Grand Canyon.

Jim

@pinkpain51 Kristine I wish you improved health and happiness too. As I said before, the thought of unrelenting pain is horrible so I can totally empathize with you. When my daughter gets her migraines now she often calls me because just talking sometimes helps and she knows that since I have been there too that I totally do understand. I just feel guilty that she inherited those genes from me.
JK