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Sunday, July 29, 2012


Someone wrote a comment in a support group about having to go to the ER because her pain was out of control.  She was begging for morphine.  At the same time she was telling them how much she hated the drug, taking it, and how it made her feel.
This, to me, is part of the bizarreness that is chronic intractable pain and it's treatment. We hate what helps us but we need it, a catch 22 that makes some docs question how bad our pain is. 

Does this person really hate taking the opiates? If so, why is she asking, not just asking, begging, for it?  If her pain is so bad why does she continue telling us how much she hates the drug?  Is this an addict trying to convince me she has pain, trying to scam me, or is she truly a person in intractable pain who needs my help, in the form of the narcotic, even if it is something abhorrent to her?

It is the same struggle some of us find when we go to the doc.

I feel awful, the pain very bad, my need for his help great.  I want to look good, for him to see me as someone who speaks well and looks good, who can adequately explain my situation and understand his instructions.

I feel awful, the pain very bad, my need for his help great.  I want to look good but my body is not doing what I want.   My hair is brushed but still unruly, my clothes somewhat wrinkled: it is too hard to use the iron.  I can still explain myself, my pain, my symptoms, my problems.  I can still understand his instructions.

In both instances there is a minefield:  she looks good, how bad could her pain really be?  She looks bad, she must be depressed.

The drug conundrum:  she hates the drugs but she wants them.  Is she an addict or someone honestly in severe debilitating pain?

I write about this now and again - the issue of "proof".  How do you prove an invisible?

Bringing a diary or journal with you where the doctor can see what your daily struggle looks like may help.  It is no longer just words without context but a calender, the days noted by how bad your pain was that day, what you could not (or could) do that day.

If you have someone who can come to the appointment with you, we should not need a 'witness' to our struggle but another voice cannot hurt, makes the result(s) of the pain more visible, because it is  seen by another.

Ironically the facial paralysis from the medical malpractice is a benefit to me, I have a 'visible' sign, they see the damage, the assumption is made, something is wrong in her face.  The lids of the bad eye are often swollen.  They ask not "Do you have pain?" but "How bad is your pain?"

I hate how I look.   I  made the video for the Jennifer Grey CNN interview.  I first did it without my sunglasses.  I had no idea how I looked to others.  I honestly thought my face looked close to normal.  I was sickened by what I saw.  Even wearing sunglasses the paralysis was obvious.   The still photo was not much better. 

But the paralysis is like the morphine, I hate the paralysis, the person who was begging for the morphine hates it, but, in both cases, it is something that benefits us.

It is not love/hate - there is no 'love' involved, but the dichotomy that we face is just one more aspect, and problem, of life with chronic pain.


  1. This is a good idea about keeping a journal. Patients come in all the time asking for medicine for their pain, but it's difficult to tell whether it's because of real pain or simply addiction. This is a perfect example of how pain can take over your life. I refer to it as "the great pain jack."

  2. Thanks for your comment. That is a good name for it. Carol

  3. I don't like keeping a pain journal. It puts me in complaining mode. I don't like giving the pain that much importance. I fill out the 5 pgs at the pain mgmt office; that's not enough? I say I'm in pain; that's why I'm there. That's not enough either?
    Doctors want us patients to trust them. Trust their judgement for meds and procedures, diagnosis and treatment. I think patients deserve some trust also.

  4. I don't either but my pain is very specific and what triggers it has never changed.
    I think it does help so we can see, as well as the docs, exactly what, when, and how. I was surprised, for instance, after my brain implant failed, exactly how much it had been working. I was truly unaware of the changes that were not big enough to see when they happened but visible when I looked over the journal.
    Patients do deserve trust for sure. Personally I have never had to fill out that much so it sounds like you give him a lot of info when you get there.
    (Not sure but think there may be a post idea here.) ((*_*))

  5. Oh yeah, pages and pages. The rules are always changing depending on whatever fear the DEA has put on doctors at that particular time. We have had pain charts fill in the dots, multiple choice, 1-10, pharmacy contracts, pill counting, bottle marking, urine testing every 6+ mo to every month, picking up refills, not picking up refills, electronic prescriptions, no electronic scripts, dated scripts, vacation overrides, no overrides. Talk about jumping through hoops. Prior auth,no prior auth, only on a Tuesday..(just kidding, that last one was all me, haha)..they just want to make sure they are above reproach just in case..

  6. Good joke but may be true one of these days ((*_*)), Watching your back, always