@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

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 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

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.

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