Pain and addiction

[Fred57]

I have been on some form of opiate for nearly 25 years.  I was prescribed Darvon in the late 80s with Ritalin for ADHD and depression along with Vistiril to help sleep.  In the mid 2000s I had a number of significant injuries to my hand, then knee, then both shoulders.  I had a left roto-cuff repair, but they told me my right shoulder and bicep tear was inoperable.  From 2006 on I started on Percocet 10 mg , 2 per day  and Ultram for pain associated with these injuries. I immediately felt i had found the miracle i had searched for all my life.  I finally felt good , pain wise and depression wise.  I've suffered with severe chronic Depression and Anxiety my whole life and antidepressants never worked.  Sadly,  the pain meds stopped working as dosage increased and i was switched to oxycontin w/ Percocet for breakthrough.  By 2013 i was on powerful Fentanyl patches and taking 200 mg of oxycodone daily for pain.  I knew i was dependent as hell and wanted to stop, but i couldn't.  Anxiety got so bad, i could rarely leave the house and couldn't ride in cars or travel. I developed numbness in my legs and after an EMG test was diagnosed with degenerative disc disease with herniated lumbar discs.  Lower back pain became prominent at this time along with chronic leg pain and stiffness. After ripping the fentanyl patches off in a severe panic attack, i went thru horrific fentanyl withdraw only somewhat helped by oxycodone.  I finally told my doc to get me off all this crap. He put me on 32mg suboxone daily.  I went back immediately saying this is horrible, my anxiety is worse.  He said, he doesn't know anything about anxiety and I should see a Psychiatrist, and that i was the only patient he ever had to fail on suboxone.  He called me a hopeless addict that needed detox, felt i was faking pain,  gave me an oxycodone script and said , see a shrink.  I went home and days later, i thought i was having a stroke...went to the ER where they looked at my meds and after running some tests sent me off to a detox.  I lasted one night in that horrid place, and walked out the next day, drove home and continued the detox on my own at home weaning off the oxycodone. I severed relations with my pain doc, for fear Id continue to want powerful opiates. That was early February of this year.  I got off all pain meds for a month, but my head was a complete mess and i was in constant pain.  I had to have some surgery in April, and was given oxycodone which i took for 2 weeks, realizing this no longer helped me in any fashion, I decided to give the suboxone another shot.  i started april 26th at 6 mg daily..i wanted to keep it as low as possible.   I slowly titrated to 2mg per day, which is where i am now.  Its been a helluva rollercoaster ride.  I am somewhat stable on 2 mg of Suboxone but still have tremendous anxiety/fear and severe pain that comes and goes all over my body, but primarily my lumbar back and relentlessly stiff and painful leg muscles, and my shoulders and bicep still hurt when doing almost anything.  I am torn between wanting more pain control versus returning to the miserable life of narcotics.  With Suboxone, cravings are kept at bay and my whole life doesn't center around the pills, but im concerned about being on it long term.  I have now been on subs for 3 months.  My pain doc had told me that i may have to take a low dose for the rest of my life, which scared me. My question is, am i doing the right thing?  Is suboxone the way to go?  I really wish it was subutex, but now im caught up in the addictions system cause i didn't know suboxone was such a loaded word.  It helps a little with pain and my head, but i still fall apart  late in the day, with painful head issues, inability to function or concentrate ,loss of executive function, migraines and severe pain in late afternoon.  I'm in bed by 7 or 8 pm every night and must take valerian root, melatonin and several camamille teas to sleep even a few hours. My uncaring PC physician won't prescribe anything for sleep and just treats me like a damn addict.  I can tell she wishes i would just leave her practice, and I would if it wasn't so hard to find a physician that takes SSD Medicare.  Will i ever be free of narcotics?  I had hoped to completely wean off suboxone but it isn't happening yet and im still in a lot of pain.  I'm so torn as to what to do.  I cannot take any NSAIDS due to kidney disease which makes OTC pain mgmt rough. Trying everything from yoga and meditation to acupuncture, but nothing helps.  Yoga actually aggravates my pain as does any form of excersize.  I've never contemplated suicide, but have wished i was dead more often these days.  I just don't know how long i can go on like this.  Everyday is a battle with my body and brain and its beating my will to live down. I feel i have come a long way to just 2mg/daily of subs, but in some ways, i have never felt worse.  The good news is my day isn't spent counting pills and craving my next 'fix' so to speak.  I so hated that rollercoaster narcotic ride at the end.. Anything else i can do or add ?  I'm really still not stable mentally or physically and cannot find a physician willing to help.  Todays docs want you in and out of their office in 10 minutes.  My situation is way to complex for that to work.  I'm losing hope fast.

[Fred57]

Thanks for your response.  I've worked very hard to get where I am, and endured and am still enduring much mental and physical pain.  2mg is a low dose of suboxone and I worked really hard to keep it low with hopes of getting off of it.  I realize it is an opiate, but it is a partial agonist and supposedly gives the brain a chance to heal.  Im not sure mine can heal however, after being on opiates continuously for so long.  I fear ultimately I will end up on suboxone maintenance or worse, methadone maintenance. But thats not what I want.

Also, I have over time, with uncontrolled hypertension ( despite taking meds for it), developed chronic ischemic small vessel disease of the brain.  This was verified by MRI.  This is chronic destruction of white matter and explains my cognitive difficulties, although I know some come from the long term opiate use and PAWS as well.  That diagnosis really floored me.

I talk to my wife and therapist about my situation but I find that no one really gets it who hasn't experienced the trauma of opiate dependence first hand and how it changes the brain and reward system.  I do think the subs help a little with pain, but not much.  Their primary effect is cessation of cravings.  I didn't realize just how much my whole being was wrapped up in opiate cravings till I was able to transition.  It has been a godsend in that respect and I fear the return of massive cravings if I get off it.  Also, I have been diagnosed with Major depression and anxiety disorder before any use of drugs, so something is genetically not right.  I'm well educated but couldn't keep a job because I would have panic attacks constantly in the work environment.  These were so intense that I couldn't concentrate, had tunnel vision, felt like my head was in a bubble and ppl around me sounded like adults speaking 'blah blah,blah', on Charlie Brown. So I have several things going on here.

I've tried all the antidepressants to no avail, and benzos help alleviate the symptoms, but again, risk of dependency with them.  Also, where I live ( suburban Philadelphia), there are few doctors that accept my insurance or taking any new patients.  Its a real problem.  I wouldn't even mind paying out of pocket if I could find a good one, accepting new patients, but the search has been futile.  Others I ask have the same difficulty.  Healthcare has never been worse in this country and it has come at the worst time for me  .I'm always amazed when I read people talk about how great their doctor is...I think, where and how on earth did they find them?

  I see an addictions psychiatrist on Tuesday that I lucked into a cancelation apt, but I don't have a lot of hope.  No way I can present my story in 10 minutes.  Doctors just want easy patients, and if you're not one, they'd rather not have you as a patient.  Really sad state of affairs.

I've added paragraphs to this comment and apologize for the run on nature of my last.  So hopefully it won't be so draining to read.  My bad

Again, thanks for your response.  If nothing else, I need hope, and your comment helps.

[jifmoc]

Hi. good that you posted. You know in your post I noticed kind of a thru-line: uncaring dr's, crappy detox places, etc., you sound sort of pissed at the world. 25 years IS a long time to be on this sh!t. And I am certain it has screwed w/ your brain chemistry. I have always had depression and anxiety too: thus when I discovered opiates, it was a perfect match. At first. I learned that I was always a prime candidate to be an addict. It just took me a while to find the drug I thought would "fix" me. Which of course just made life horrible. So, I empathize w/ the mental part, totally. Here is the point: For 25 years you have been on some type of opiate (yes suboxone counts: it screws w/ your brain and the wd's are horrible from what I hear) so you really don't know what your ACTUAL pain levels are. Many people w/ serious pain issues will come on here later and tell you that they manage BETTER w/o any opiates. So I will let them tell you about that.  My question to you is do you want to try and live clean and see how that helps your depression and your life?  What you wrote made me tired just reading it, I can only imagine living it.

Please don't give up. You don't even know how you really feel yet. Folks w/ sub experience will come on here too but it sounds like all it's done is keep your cravings at bay. Which isn't what you want. You want a life. It doesn't seem like it, but being off all this junk could be a start for you to join life again.

Also, is there anyone you can tell this too? Someone that can help find you a good dr.? They do exist. If you're isolating, that makes your depression 10x worse, trust me.

Hang tight, others will come on w/ more info. But I wanna let you know you've been heard and I get the rollercoaster, totally. I was so sick of it, I finally, finally got off! You can too, just may take a few steps.