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Hello! I am new to this site, and was hoping some veterans could steer me in the right direction...

Hello everyone,

First off let me say that I wish you all a pain-free Saturday.  This is my first post, I am new here, but have come to this site many times in the past few years when I was seeking advice.  I found that the experiences of people I read here were very helpful to me.  A brief bit about me - I have been suffering for almost 4 years in what has become a very bad, painful chronic condition that has robbed me of so many things.  I am still working full time but have slowed down significantly.  I have no social life to speak of because my days and nights are spent controlling pain.  Everything is centered around pain - getting it to dial back, worrying about when it is coming back, etc.  I have been in pain management for 2 years now, but due to lousy insurance through the employer, the doctor has now decided to only just keep me on meds.  I currently take 3 meds - one of which is of the 'heavier' variety but it is to the point now that it barely touches the pain, when it used to dial it back for about 5-6 hrs.  Doctor seems to barely take any time to even talk/listen to me because he is agitated about my insurance.

I have had a total of 33 'procedures' - meaning 10 Bilateral RFA's and 23 epidural or facet injections.  None have helped to any real level.  I had my most recent MRI this last Saturday.  Currently I have 2 herniated, 2 bulging and stenosis in C-spine; DDD from shoulderblades down (but this I can live with as it only causes my hands and arms to get sore or go numb here and there.  This is the least of my problems.  In the Lumbar spine, I also have DDD, Central Canal Stenosis L4/L5; Foraminal Stenosis L5/S1, Sacroillitis, Spondylolisthesis, Sciatica, Radiculopathy down the left leg, hip bursitis, and permanent nerve damage.  Most recent MRI findings add to this by indicating a 'central disc herniation that migrates below the superior endplate of L5 creating mild effacement", "broad disc herniation and significant foraminal stenosis L5/S1".  Both L4/L5 and L5/Si discs are "dessicated" with a "severe" loss of intervertebral disc space at L5/S1".  In addition to all of this I now apparently have "Markedly edematous discogenic marrow change at L5/S1"  Looking at the films, it looks like nothing is left at L5/S1 and the bones are edematous around it.  I am in constant pain and the pain management doctor will not do anything beyond medical help due to insurance not paying enough.  

I don't know what my next steps are?  Ortho or Neuro?  I first went to a neuro before finding this pain management doc, and the neuro was about the rudest, most awful person I ever met who did nothing and chided me for even having come there as "I shouldn't have come to him, he has nothing to do with back problems" (??).  I made a call to an unnamed spine treatment only facility that has a commercial out there, but I don't have the best feeling about that.

Can anyone share with me what they did beyond pain management when they needed help badly, but feels they did not know where to turn next?  I am always in so much pain and just want my life back!  Thank you so much and sorry for such a long post!  
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Comments

  • SavageSavage United StatesPosts: 7,385
    hello sick_and_tired!
    welcome to spine-health
    please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • SavageSavage United StatesPosts: 7,385
    Hello..
    You say you have been in chronic pain for four years now....
    When I started on pain management, and I was never a candidate for surgery, my PM doctor told me that he would be alternating my main pain med so it doesn't become ineffective.

    I started on Fentynal patch then year or year and half later OxyContin...and so on.
    He has mentioned other meds as possibility for future as I may have couple more decades of keeping the edge off of the pain....plans B, C, etc...

    You said your PM doctor will not do anything besides medical help. Does that mean nothing besides medication?
    I have not had anywhere near the procedures you've had, but when I've had a treatment, if in effective, we don't try it again.
    Have you asked your PM doctor if there is a referral he could give for any other kind of help with edge off of pain?
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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  • Hi Savage,

    Thank you so much for your response.  I am sorry I should have clarified things better.  I had seen that my post was rather long so I did not want to make it much longer.  I have had many medication switches - GP had started me on (6) 7.5 Hydro's a day, then when I was referred to PM, was put on Percocet 10's then 15's, then Oxy 20's with Percs for breakthrough, then Oxy's up to 30's 3x/day + 10mg Perc 3x/day.  When Oxys became ineffective, we moved to Morphine ES with Perc 15mg 3x/day.  The Morphine which started as 10's 3x/day then went up to 20's.  I found the morphine to be less effective than the Oxy.  Finally in last January I was switched to Methadone 10mg 3x/day and the Percs were dropped down to 5mg 3x/day.  The Methadone worked better than anything else for long-lasting pain relief and had no side effects.  I liked it the best for pain relief but it has been becoming less effective lately I think because I have been on the same amount for so long.  The 5mg perc does nothing so I find that I take (2) sometimes 2x/day which then causes issues where i have to take less to make it last the whole month.  The long and short is that I am being undertreated for pain right now because he does not want to up the Methadone for unknown reasons and does not want to up the Percocet because of apparently some other patient was being an idiot with higher dose Percocet?  I don't know the exact reason but based upon his comment at the time it led me to believe that someone was abusing it so therefore everyone has to suffer?  That kind of irritated me - I am in legitimate pain and do not abuse medication. I suffer every day because of the people out there who made it so hard for legit patients.  I also take Neurontin which sometimes helps great and sometimes does nothing.  I can't take Neurontin before I drive because it makes me feel drunk.

    As for referrals, he has not mentioned any and does not really spend any time with me - the appt lasts 5 minutes at best.  I feel unheard and undermedicated.  I apologize if that last sentence comes across as crabby in any way, it's not meant to, it is a constant battle when I am in constant pain to not come across snappy.  I hate that I have become this way and am so frustrated over everything.  If only anyone ever knew how many tears of pain and frustration I have shed while i continue to deteriorate.  I really just want to feel better.  I don't know what else to do.  If I switch docs, is there ever a chance that a doctor would just take me off the medication I am on and cause me to WD?  I work full time and could not imagine going through that.  Thanks!
  • SavageSavage United StatesPosts: 7,385
    Wow! And you still work full time!
    I couldn't do it. There came a time I was just so consumed by pain..there wasn't any strength left to concentrate on other things..like my job and being nice to my co workers.  :) I definitely get the crabby thing!

    When I first started feeling the edge off of my pain, I would still try to keep up my lifestyle by taking my breakthrough hydrocodone.
    Even though I never took more than the prescribed amount, it didn't take long for PM doc to tell me I would need to adjust my lifestyle.

    He preferred, and I grew to agree and appreciate it, ..that I limit my activities as part of my pain control.
    Also, that the pain is indicating something wrong and reminds me of my limits...such as the no lifting, bending, twisting....
    And if I continue to regularly push through that pain....I may cause more injury.
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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