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Posted by on Sep 29, 2016 in RA Blog Week | 6 comments

The pain with pain meds – Day 4 of RABlog week

The pain with pain meds – Day 4 of RABlog week

finalbadgejpg_264x240This is day 4 of #RABlog week.  Today’s post is:

The pain of pain meds – Pain medication prescriptions are difficult to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members? Tell your story today.

My difficulty with these medications is not mine.  I use pain medication sparingly, and my doctor is kind in providing pain medication according to my need.  I have a good relationship with my local pharmacist, and I work hard to know the pharmacist and pharmacy techs not just for pain medication but because I deal with them on a wide range of medications both for Diabetes and RA.  My family has never been upset with me using these medications so long as I exercise precaution.  First I do not drive while using them, and second I try to keep my usage to a bare minimum.  By and large, things work well for me when I use these medications.

My introduction to pain medications

No, my problem dates back much further and was more severe than most people imagine.  I was 11 years old, and my Mom was having severe pain associated with diabetic neuropathy.  Her pain was unimaginable.  Mom walked the house all night every night because sleeping was useless and sitting down made her feet hurt worse.   Mom would collapse from exhaustion at some point every day or night only to be awakened with severe pain.  She would often wake screaming as the neuropathy would seize her body.  This went on for nearly a year when finally her doctor prescribed the only available medication that seemed to work, an injectable narcotic.

Mom used the medication as prescribed (when pain was intolerable) but those in between times became shorter and shorter.  Obtaining the prescription became part of Mom and Dad’s dialogue.  Would the doctor prescribe more, how much did she have when she would run out?  It was an awful spiral, and clearly, Mom was losing the battle.

turn-signA terrible turning point

In the spring of 1968 following a national outcry regarding drug abuse and the election of President Richard Nixon; the doctor told her three things.  One being this was the last prescription of this medication he would write for her, two  she needed to find a new doctor as he would no longer treat her pain, and  three Good luck.  Mom and Dad were out of options.

Two months later Mom was admitted to Indiana University Hospital for the first time.  Her admission was designed to deal with both withdrawal from the pain medication and complications of diabetes.  Mom was hospitalized for just shy of three months.  I was not allowed to see her except at a window and then only briefly.  Word circulated that Mom was a drug addict and as such, I was questioned about it at school both on the playground and in the office.  You can imagine that the playground was fairly rough teasing and humiliation, and the office was official concern about my wellbeing.  Their concern being whether I was being exposed to recreational drug use, etc.

For the rest of her life my mother talked about what happened and the awful circumstances she found herself part of.  It was clear to me that going from being medicated to none what so ever was a sudden and violent shock to my mother’s health.   She continued to walk around the house almost every night and collapse later.  She continued to scream in pain particularly at night.  It makes me cry to think of those days and the awful pain my Mom endured.  I was aware of some of what occurred during the withdrawal period and assuming what I heard was true, her stay at IU hospital must have been total hell.

9614337My lesson about pain

So this is what I know.  Pain is real.  I knew it at an early age and of course I know it today.  I have witnessed the most awful pain that being when your Mom is collapsed on the floor because she fell asleep walking.  I know doctors no longer cut prescriptions off all at once, lest they cause this sort of overwhelming reaction.  I know Mom’s doctor was ill equipped and irresponsible.

I also know that when we attack pain medication, we are attacking the wrong thing.   I agree there is prescription drug abuse.  But I never hear people who complain about this abuse talking about attacking the issue of pain.  I know that until we talk openly and with conviction about combating pain, we are missing the point.

Shame and blame miss the point

I have written extensively about pain medications in the past.  Recently I wrote three blogs about pain:  Pain and consumer reports, Is insulin addictive, Pain and diabetes are they similar, and probably some others, I hope you will check those blogs out. Based on that experience, I can say without a doubt that the first thing we need to eliminate when discussing pain management, is shame.  The second thing we must acknowledge is that the issue with pain medication is less about the medication and more about the pain.  Let’s figure out better ways to deal with pain management because figuring that out makes more sense than shaming patients who have chronic pain issues.



signpost-take-care-of-childhood-around-the-school-1311194Take away for September 29, 2016

  • Pain is real
  • People live in significant pain
  • Let’s start a new premise, the pain with medications is pain
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  1. What a truly horrendous experience for your mother, and the whole family. Just awful. The real worry now is that the US seems to be heading back down that path – and there are rumblings here that suggest we may well follow suit. Wouldn’t it just be a fine thing if the doctors just stopped and remembered they’re there to treat patients, and that includes treating pain – and standing up to the bloody politicians?!

    • Karen, I agree. The issue of understanding the pathways of pain in the body are so misunderstood. We have such difficulties with the science of pain and pain management. This lack of understanding of the pain process is so misunderstood that we end up classifying in these wild swings. In the 90’s anyone who complained of pain was given copious pain medication. Now we have the opposite. We are so concerned with medication abuse we deny those with chronic illness pain medications as a way to prevent abuse.

  2. How awful that must have been, to witness your mother’s private HELL. My heart goes out to you.

    • It was difficult, though as an eleven-year-old, it is hard to understand, except that my mom was very ill and in the hospital. That part was not unusual because mom was ill for much of my young life. It is sad to know that she struggled with pain for the rest of her life, always without anything more than Tylenol or Aspirin.

  3. Dear Rick, Thanks for sharing this story. I’m so sad that your Mother suffered like that. As a health care system /nation we swing from one extreme to another. For a while there was so many given medication like oxycontin,now we have a prescription drug problem . My therapist quote my 38,00 deaths but CDC says 14,000. CDC does say 1 in 4 people on prescription drugs struggle with addiction.I know someone who has been on percocet more then 12 years,currently the dose has just been increased.She has multiple health problems but up until one year ago was vibrant and helpful to so many. She still is engaged with many. Is she addicted ,does it matter? Because healthcare can’t manage the people who suffer addiction,now anyone needing pain relief is having difficulty getting narcotics. We in healthcare were guilty of overprescribing now it’s being resolved with severe restrictions by the government. Surely we can do better.

    • Ann, I see I missed your comment twice. I am so sorry I missed them.

      Yes we can and need to do better. We will need a scientific push to help us find medications to help while not causing addition. But int he end it will be up to doctors and patients to curb abuse. I am so sorry to hear about your friend. I rather think it does not matter if she is addicted. We have a saying int eh diabetes community that at age 70 we need to care less about blood sugar and more about quality of life. I think your friends case might call for the same reasoning. I think in retrospect about my moms life and if the horrific pain she suffered was worth the extra years of life? I honestly do not know for certain. Yes I loved having her for 20 more years and she loved being here, but my goodness the cost in terms of suffering. It was a massive.

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