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"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Tuesday, April 5, 2011

Drugs, pain, and belief

I am reading and commenting in another blog site about doctors and opiod prescriptions for chronic pain. There is a lot of response from folks saying they cannot tell the difference between someone who comes to the office with real pain and someone who is posing as a person in pain so they can get opiates like oxycontin.

A migraine commercial has the actress saying "These things are for real." Do you have to say "This is for real" when you talk about medication for, say, diabetes?

I can see someone saying "Well, of course diabetes you can see with the blood test results so it is not subjective like chronic pain."

Migraines have specific criteria associated with them. Auras, nausea, severe light sensitivity. Nausea is subjective. Absent vomiting you have to believe the patient that she is honestly feeling sick to her stomach. Light sensitivity. You have to believe the lights truly hurt her eyes.

My pain, trigeminsl neuralgia, used to be called the 'worst pain known to man' and the 'suicide disease'. (These terms are now often also used when referring to RSD (regional complex disorder, another severe often disabling pain disorder).

I showed the neuroophthalmologist where my pain was. I described it to him "like a knife slicing thorugh my left temple whenever something touches against the area, even the lightest of breeze or it comes on on its own but it is also there all the time." I flinched everytime it looked like he was going to touch the area and set off my pain. All of that was subjective or a fear response to the thought of the pain being triggered.

Surgery proved the cause of my pain. I have a birth defect that resulted in dozens, maybe more, of extra blood vessels throughout the affected side of my brain. Some of them were against the nerve, enrobing it. When they were removed the pain was gone 99.999%.

I have a birthmark in the area where the pain was. It is vascularized so, unlike most birthmarks, it turned bright red when I was embarrassed, stressed, etc. A little tiny, tiny red area still remained after the surgery. Within 3 months the birthmark returned as the blood vessels grew back. With the renewed blood supply came the pain, back as horrible and debilitating as when it first started. And as invisible.

My doctors tried all sorts of narcotic medications. Despite the proof of the pain and reason, a few docs refused to 'believe' in my pain. Most did despite it being a subjective complaint. It became more and more only a subjective complaint as surgery after surgery left me with phantom pain, a pain without anything but subjectivity to describe and diagnose it.

Yes fibromyalgia and RSD are relatively new disorders in the scheme of things. As time has gone by there has been more research and criteria to describe them, making them not wholly subjective.

I, and my cohorts in pain, know what it feels like. We know what the medications do to us. Many of us describe feeling logy, brain clouded, groggy, dry of mouth and slow of thought.

We do not like these drugs. We do not want them but, even more, we want to have our pain reduced. Junkies and pleasure seekers may like these drugs. For the most part we hate them but when all you have is someting you hate, something you do not want to have to take, you do what you have to. We take them hoping at some point in time we no longer have to defend our pain, or defend taking medications we do not like.


  1. Carol, Thank you for a great reading/learning blog and your book "A Pained Life". Keep up the good work. L Dottie

  2. You are so right in everything you said here. Even with proof of injury and nerve damage, I still have met doctors who believe my pain is "all in my head" and not real. I've had a doctor put my cat scan and mri films on light boxes. He then pointed out every thing that was wrong in my lower back and pelvis, remarking that each one of those issues cause pain. He then said that together I probably live with a great amount of pain every day, to which I said yes. He then said "Learn to live with it" and that was the end of the appointment.

    It is sad how we treat fellow human beings who are suffering. Somehow we believe it is "noble" for a human being to suffer and not have adequate relief for their pain. Yet for other species we say "They shouldn't have to suffer" (dogs, cats, etc.). I don't get that honestly.

  3. Hi Raven/Missy.
    It is a bizarreness that because we have ability to verbalize our pain we also often have to 'defend' it.
    And I agree, it is only npble to those, I think, outside of the experience.
    Glad to read your comments.
    Thanks Carol