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Has Opioids Totally Quit Working for You?

I have pulled most of my initial following comments out of another person's thread:

As of the writing of these comments, I am now a week without any opioids.  I have never used MM (mainly because it only recently became legal in my state, the product being sold is known to be very inconsistent and very expensive).  My reason for quitting was that the opioids were not even cutting any of the edge of my pain any more.  My PM doctor had allowed me to significantly increase my opioid level a couple of months back and I still got no relief anymore with the opioid therapy. 

 
In addition to no pain relief with the use of opioids, I was being refused any antidepressant aids.  SNRIs and SSRIs make me violently sick.  The antidepressant relief that has been found that works for me is benzo based.  Yea, the latest rule, no opioids and benzos, no matter how small the dose of either.  Coming off of opioids has been a living hell for me without any antidepressants. 
 
Question to any readers of this thread, have any of you ever experienced pain so intense that you got no relief from any level of opioids?  Any doctor that I tell them of my experience, they just brush it off as "opioid tolerance".  Low levels of opioids helped "cut the edge" off my pain for over 20 years and all of a sudden, it no longer works.  I have a very difficult believing the line about opioid tolerance.
 
My wife has found me totally responsive in my reclining chair.  Before "passing out", I remember being in extreme pain and when I "come to", I was still in intense pain.  The only follow-up tests that were performed on me was a stress test for my heart which came back clean.  The cardiologist thinks my passing out is from the intense pain.  My worst pain originates at the base of my neck and then primarily radiates through my neck, shoulders, upper arms, completely around my upper back/chest and lower legs/feet.  I have compromised neurological feeling and motor control when the pain gets worse.
 
I've been waiting for a while and have to wait until April 3rd for an office consultation with my neurosurgeon who do my last two ACDFs.  I continue to be told, pain is no emergency.
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Comments

  • nut, let me start off by saying that I am fortunate to have never been in that situation where opiates don't give some type of relief...

    I've had a time or two where "something happened out of the blue" where I was recliner bound for a few days and my Rx barely put a dent into it, but I guess that's the way it goes every now and then with multiple spinal issues...but after 3-4 days it subsided back to my usual levels...luck of the draw, I guess

    with the way things are today many doctors are taking everybody down to the imaginary 90 mme level, I guess there are many who are in a world of hurt...just unethical in my opinion

    I've been reduced from 150 mme to my current 90 mme over the last two years and are dealing with it...dare not open my mouth as I appreciate that!...but I can deal with that level and accept it grudgingly

    I'm in TN and  noticed a new sign up this morning at my doctor's office stating that everybody will have to be at 90 mme due to TN state law...it replaced one stating 120 mme or less...but I KNOW that is not a state law...he just does not want the extra hassle from the DEA having to explain why some are over that limit with the extra paperwork, etc...a sign of the times of doctors bending over for the DEA although the DEA says "it's just recommendations" ...whatever it takes for him to keep prescribing, I guess

    I just hope my state calms down a little and quits being so gung ho with the legislation...claiming it all for the overdoses...every night on the local news they're blabbing about Narcan increases by paramedics/firemen and showing every single overdose...never saying by what drug...the media hype is out of control around here....then politicians who have never had chronic pain issues passing more restrictive legislation that does nothing but hurt the legitimate patients...IT ALL NEEDS TO STOP!

    then e get a democrat to start a medical marijuana bill to try and ease the opiate situation...and it's shot down before it gets its' first breath...just pathetic...I'm 60, so I'll be dead and buried before TN EVER passes a medical marijuana bill that allows smokable form for chronic pain patients...even our state Attorney General has come out and say that "only bad people smoke marijuana"...just a bunch of old geezer Republicans living in the stone age...they practically feel the same way about alcohol

    who knows what the future holds...it's not good I'm sure

    I hope you can get everything straightened out and get some relief






  • Yes I have had this happen and numerous times. I have been on Opiates since returning from Viet Nam and seeing the same Pain Management Doc since 1992. I am fortunate in that he firmly believes that opiates have a place in medicine and he is not afraid to use them. When this has happened in the past we (and I mean we) would do an opiate rotation which I found always seemed to work. Initially I was on MS Contin at very high doses then a Medtronic Pump which for me was a waste of time, money, energy, etc.  He would ask what I wanted to switch to and if he had any qualms we had a thorough discussion about them.  Bottom line is if you have been on say morphine or oxycodone for a long period, you may want to ask to rotate to the equivalent dose of dilaudid or hydromorphone or levorphanol which though still available is rarely used. The one opiate that worked best for me was Opana or oxymorphone however there seems to be a supply problem and the pharmacist could never seem to find a reliable supplier of it so I am currently on Oxycodone, 160mg daily in divided doses. Yes, well above the "recommended" but well documented and my doc stands behind it. The key to adequate pain control is having a physician you can talk to without fear of being "labeled" and one that speaks to you on your level and does not "preach" to you.  Maybe it's just me but in my mind the doctor works for you and reading some of the posts on this forum I just have to "bite my tonque".  If you can't have a adequate discussion of your issues with the doc your seeing than the battle is already lost. Stand up for yourself as no-one else will and ask that your problem be solved!

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  • nutcase007nnutcase007 United StatesPosts: 861

    @scinmyheart and @jerseymike01 -  Both of you, thanks for your comments.  Rotation of different opioids is an idea I'd like to consider, if I'm ever allowed and found effective again to use opioids. I've never been on the high levels that you both take.  When it became apparent that the oxycodone wasn't working for me, I was give a high dose of oxycodone (which is what I've been using for years) in a medically supervised setting and the high dose of oxycodone did nothing for my pain. 

    I've become convinced that whatever is triggering my extreme pain, neurological symptoms and swelling at the base of my neck is why opioids are not working.  I'm told I need to tough it out until my neurosurgery consult on April 3rd.  Hopefully I can get some form of intervention.  Pain levels that have triggered "passing out" events contains very little of quality of life.

    It feels like any future option of using opioids has been taken away from me, at least in my part of the country.  Basically, I'm being told the only people that were getting any opioids for chronic were those that were "grandfathered".  Once anybody goes off of opioids, that's it.  We all know what that is about.   

  • dilaurodilauro ConnecticutPosts: 13,271

    I am on the fortunate side.  I've been on opioids now for about 15 straight years, and on/off for the past 30 years.  In the past 10 years or so, I found that after using the extended relief opioids  (ie Oxycontin), I found that after I was finished with that, the other opioids didnt seem to work as well.

    My pain doctor and I decided to switch types.  I went from Oxycodone IR to Opana IR.  That worked for about 18 months or so, then Opana became virtually impossible to get in the IR format.

    But, now, I have been on Oxycodone 5mg IR for 5 straight years.   Since then, it has always been very successful for me.  Perhaps, now that I down to a maintenance level (20mg/day) it is just what I need to get by.

    It was a far cry from the 80mg Oxycontin and 60mg Oxycondone IRs daily from years past.


    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • Nutcase,

    As your are passing out because of pain, one of your drs should be doing something to try to fix your situation.  I remember Sandra and a few others mentioning a test that can administered to determine which opiate works best for you.  I believe it is based on your bodies ability to metabolize the drugs. 

    Other than trying different opiates or the same but in patch form I am at a loss for suggestions.  I cant even imagine having to live in that much pain everyday.  Today I have been miserable as my upper back hurts--actually aches is a better word.  I have taken everything I have but for some reason my pain is just stubborn today. 

    At my last pain management appointment my dr looked at me and said "Okay if you want to complain now is the time to do it!!"  I am fortunate my dr is kind and compassionate.  I wish they all were.  I hope you get help soon.

    dmo

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  • nutcase007nnutcase007 United StatesPosts: 861

    Thanks to all that posted comments.  I've slowly increased my level of Neurontin and it appears to be helping a little to calm down some of the neurological distress.  I'm currently up to 1,500 mg a day.  I do not consider high dose of Neurontin a long term management plan.  I'm just trying to prop up myself until April 3rd when I have my latest consult with the neurosurgeon.   Thanks again for all the experiences that were shared .

    I find it crazy for 21 years a little oxycodone was so effective in managing spasms and taking the cutting edge off my pain.  From the symptoms. I guessing that I have a new condition that is fall-out from this severe whiplash that shattered the facet side of mu cervical spine and upper thoracic spine 40 years ago.  It is at a new location with totally new symptoms.

  • Hi Nutcase and everybody, the Drs love Gabapentin these days. Love it. They actually seem happy to hear that I am on it...and on high levels. Maybe it is just a response to me and my problems caused by lots of pinched and trapped nerves, arthritis, etc. but I think they like the Neurotin/Gaba because it helps and they can prescribe it without ramifications. It does help me, a lot, but it is not a replacement for the opioids I need. Hope you find what helps. And can get it.

  • nutcase007nnutcase007 United StatesPosts: 861

    @darla19 - Thanks for your experience and comments on Gabapentin.  I recently again found out why I do NOT do high does of it.  My practical limit appears to be around 900 mg a day.  Once I get beyond that level, I get a lot of fluid retention that makes my nerve root and/or spinal cord inflammation worse than if I had not taken any Gabapentin.  

    I hope for your sake, the Gabapentin continues to work for your.  I find nerve inflammation to be very torturous.  I'd not wish it on anybody.  

  • Thanks, nutcase007...I wish the same good things for you! I do get a lot of inflammation and water retention which makes everything feel...well, inflamed. I did not think about it being the Gabapentin because I have inflammatory/psoriatic arthritis and have not found a good med for that yet. I am supposed to start Remicade infusions but have to wait until after this upcoming spine surgery. I thought my increased inflammation was due to that but maybe the increased Gaba I am taking is the reason. Such murky waters. It seems like you have to wait a long time for your NS consult. Not easy. They have nothing sooner?

  • nutcase007nnutcase007 United StatesPosts: 861
    darla19 - I requested back on Feb 14, once I was referred back to him to be put on a cancellation list.  He is a spine neurosurgeon that is in high demand, so few people cancel.  Two weeks and one day until my appointment.  Yes, it has been a rough wait.
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