Hello, hope to get some encouraging words.
I am 45 years old and have always been in good shape. Perfect record....no history of drug abuse or crime. I was lucky to have 1 or 2 drinks a year.
I started having terrible pain in about 2006 or 2007. After many doctors, looking answers and alternative treatments, I almost gave up. They found MGUS which is a blood cell disorder that can cause neuropathy and pain. Mine seemed to be located in the mid back, feet and left arm. I had multiple tests, studies and workups.
I avoided taking meds because always being a health nut and hated the negative effects that could occur. About 3 years later I get recommended to a great cancer center, and oncologist since I have a blood issue that can turn to cancer. I am monitored twice a year for life. The oncologist referred me to their pain center as he noticed my suffering. Reluctant. ..i went. The pain I had could leave me curled in a ball on the floor crying. Just ask my wife. Suicide was often crossing my mind.
I feel like this is where I was set up for failure with lack of guidance or controls.
The doctor started me on a low dose of Nucynta which did little. Eventually we got to a high enough dose, I was able to deal with pain, both pain was less and I felt like it wasn't too bad. I told the doctor it was not perfect but good. He then bumped me to the recommendation max of 600 mg. Even better....felt better and almost no pain. This was great, back to my old self. I wanted 24 hour relief so he said take a few at night and prescribed 900 mg plus he allowed me to take more and early refills were fine. I got scared as I noticed I was taking more than recommended. He said it was fine as I am a big guy and the pain is not that strong. He said it should be like vicadin with phone refills. I said okay and kept taking them.
Then I was taking more as I noticed pain was breaking thru. I also was waking up feeling tired. So I had to start to take one right away to feel normal. I said enough already. I asked to try something else cause I didn't like where this was headed. Tried morphine but made me sick. Back to nucynta with vicadin. Vicadin seemed like otc tylenol....little help so I was taking max too.
I did not like where this was headed and wanted a doctor close to home so I moved to a new doctor. I called the old office and said I would be going to a doctor close to home.
With the new doctor I mentioned how I was on 900+ mg. I also was afraid to mention I felt dependency building for fear of rejection...not wanting that hellish pain back. He dropped me to 600 mg but that was it but always worried that would not help me wean down. He did urine tests so I thought, great, this will help me. I figured maybe this is how an appropriate pain management center keeps people in line. Great, except I still struggled.
Second or 3rd visit my urine was empty. When I saw him, first thing is said was that I am running out early. We talked and he added morphine for night pain. This worked but kept taking excess nucynta cause it seemed to work better and made me feel normal. The morphine did help some at night so I asked to switch to morphine and nucynta backup. I got terribly sick and was back in his office early again making more changes.
I was terrifies to mention dependence and tried to fix it by switching meds to something that didn't make me dependent. Not know much about this process, I kept reading more articles and getting scared.
Back with the old doc....i noticed a skin problem like eczema. I mentioned to the doc can it be related to nucynta or the dose. He insisted no
I started seeing dermatologists. Eventually one said any drug could cause a reaction even though not common. Whenever we stopped nucynta or weaned off....my skin got a little better. I figured this would help me stop this med....my dermatologist agreed and sent a note to my new pain physician. He was not convinced but I know I convinced myself as I was sick of dealing with this. Skin and nucynta. I forgot at the old center we tried long acting nucynta but it wore off early. So back early we switched to Horizant and vicadin for break thru which didn't work well. Horizant helped but now with no Nucynta the pain became bad, I was withdrawing and not sleeping. I was still finishing early.
I called twice complaining of suffering and was told they couldn't see me till following week. Well the day came and a huge snowstorm hits. I asked if anything could be done....go to ER...anything. vicadin seemed to do little. I was only on 3 a day which was nothing. I wanted to ask doctor if we could increase. In desperation I researched and as a result started taking a bit more making sure not to exceed the max daily, knowing I was taking morphine and nucynta at one time. When desperate, it is hard not too.
All along I was thinking we have to fix this and I was hoping the doctor would be compassionate and as if I was struggling and that I shouldn't be embarrassed. Talk about hard to talk abou! I wished he would break the ice.
My last call they said the doctor was not comfortable having a colleague see me so I would have to wait another week. I felt at rock bottom...in terrible pain and suffering, withdrawn from life again.
So I decided next appt, if they don't call and dismiss me, to be 100% honest about this problem and I can't do it myself. I was going to come with a lot written down so I don't feel corned, like I an addict or stigmatized or having to defend myself. I want to be honest and take that step. I am going to ask if he will keep me and work with me through this. I don't want to be alone in pain. I want them to do whatever, medications to help with dependency, do the urine testing again....not sure why it stopped. Whatever, pill checks, smaller scripts, ER meds. I need to have an honest relationship with my doctor or this can't work. I always hope doctor's when prescribing opiates would say I don't have to be embarrassed and honesty is so important, especially if I feel dependent.
So appointment is next week and I am so nervous.