Sunday, April 4, 2010

and in other news: OCHOA remains a big, fat TURD

When I checked my CRPS medical feeds this morning, there were TWO articles highlighted. TWO is a lot, as there are, usually, NONE.

The first is another very general piece from Medical News Today: What Is Complex Regional Pain Syndrome (CRPS)? What Causes Complex Regional Pain Syndrome?

Complex regional pain syndrome, also known as CRPS is a rare, chronic (long-term) and progressive condition characterized by severe pain, inflammation and changes in the skin. Patients commonly describe the pain as a burning sensation...

While these sorts of articles are of little use to me at this stage of the disease, I am glad that they are being written. When I was first diagnosed, the amount of misinformation and prejudice within the scientific literature was horrifying --and depressing.

I remember asking my primary care doctor if he believed that CRPS "actually existed." The question was posed as he peered at my right foot, hugely swollen, purple, colder than cold (and on fire, too).

God bless the man. He said, simply, "Yes, I do." I hung on to that "Yes, I do" for dear life.

What I appreciate about this general interest type of article is its straightforward tone. It doesn't ignore the wasted years when the medical community considered CRPS as yet another example of female hysteria:

Sigmund Freud, (1856-1939), an Austrian neurologist who founded the psychoanalytic school of psychiatry put forward the idea that CRPS might be mainly a psychological condition, caused by some unknown underlying psychological difficulty or trauma which make patients feel pain. As subsequent research has demonstrated that CRPS patients undergo real physical changes in their nervous system, this theory has been largely discarded. Other studies have shown that CRPS patients do not have a history of mental illness prior to the onset of symptoms.

Even well-informed health care professionals struggle with the relationship between mental illness and CRPS, as it is likely impossible for them to find an emotionally healthy person with advanced CRPS.

I certainly don't consider myself emotionally or mentally healthy. I do know that, as Dr. Anthony Kirkpatrick frequently says, "psychological symptoms related to CRPS are a result and not a cause of the disorder." Traumatic Neuralgias/Neuropathic pain syndromes and An overview of amplified musculoskeletal pain syndromes are two studies commonly cited.

You may wonder why this is so. Basically, in a severe case of CRPS, such as mine, the patient faces professional, financial and social losses. There is not even the hope of dying early, though I expect that I will not see my full allotment of years. Instead, there is the prospect of constant, severe pain, little sleep, less and less function, immunosuppression, and did I mention constant, severe pain? The likelihood of ending up alone -- if not completely, then essentially?

I tend to consider the development of anxiety and depression a healthy response to an insane situation. Dr. Kirkpatrick prefaces the Clinical Practice Guidelines for CRPS this way:

If undiagnosed and untreated, RSD / CRPS can spread to all extremities, making the rehabilitation process a much more difficult one. If diagnosed early, physicians can use mobilization of the affected extremity (physical therapy) and sympathetic nerve blocks to cure or mitigate the disease. If untreated, RSD / CRPS can become extremely expensive due to permanent deformities and chronic pain. There are no studies showing that RSD / CRPS affects the patient's life span. The potential exists for long-term financial consequences. At an advanced state of the illness, patients may have significant psychosocial and psychiatric problems, they may have dependency on narcotics and may be completely incapacitated by the disease. The treatment of patients with advanced RSD is a challenging and time-consuming task.

It makes you crazy, simply and accurately put.

People harboring nutty tendencies before falling ill are only going to end up magnifying their wackiness under the unkind influence of CRPS.

And yes, it is discouraging to know that you are one of those patients... And how low one's aspirations have sunk when not being one of those patients becomes a goal, an actual freaking goal.

There is help out there in the form of pain counselors, stress management, training in biofeedback/self-hypnosis, relaxation exercises and pharmacological treatment of depression and anxiety. To be honest? None of these things (passed off by terms such as Coping Skills and Psychosocial Modalities) will help in the least until you squash That Rat Bastard Known as Denial.

Squashing That Rat Bastard Known as Denial takes firm intent and time. I wasn't fully convinced I even had CRPS until it had spread to 3 of my 4 extremities. It took even longer for me to accept that there was no cure and that most treatments are futile (when I looked to them for cures!).

The various modalities and treatments suddenly become much more efficacious when expectations are trimmed to fit reality.

Speaking of reality, I started out with two results from my medical feeds, and then got bogged down in the dangerous generalities of the article for non-specialists. The second result was published in the journal Clinical Neurophysiology [2010, March 30, 2010] and bears this snazzy title: A search for activation of C nociceptors by sympathetic fibers in complex regional pain syndrome.

I so appreciate the labor behind this article. The promulgation of the sympathetic nervous system as key to all-things-CRPS drives me... well, nuts.

Not whacked out nuts but frustrated nuts.

One of the major reasons the name of the disorder was changed from Reflex Sympathetic Dystrophy to Complex Regional Pain Syndrome (Types 1 and 2) was, precisely, that the sympathetically-maintained explanation for the genesis of CRPS and the maintenance of its pain -- was not supported by science.And science is still consistently failing to find support for this long-held but never proved theory. This is the abstract for the article about the study of sympathetic nerve fibers:

OBJECTIVE: Although the term 'reflex sympathetic dystrophy' has been replaced by 'complex regional pain syndrome' (CRPS) type I, there remains a widespread presumption that the sympathetic nervous system is actively involved in mediating chronic neuropathic pain ["sympathetically maintained pain" (SMP)], even in the absence of detectable neuropathophysiology. METHODS: We have used microneurography to evaluate possible electrophysiological interactions in 24 patients diagnosed with CRPS I (n=13), or CRPS II (n=11) by simultaneously recording from single identified sympathetic efferent fibers and C nociceptors, while provoking sympathetic neural discharges in cutaneous nerves. RESULTS: We assessed potential effects of sympathetic activity upon 35 polymodal nociceptors and 19 mechano-insensitive nociceptors, recorded in CRPS I (26 nociceptors) and CRPS II patients (28 nociceptors). No evidence of activation of nociceptors related to sympathetic discharge was found, although nociceptors in six CRPS II patients exhibited unrelated spontaneous pathological nerve impulse activity. CONCLUSIONS: We conclude that activation of nociceptors by sympathetic efferent discharges is not a cardinal pathogenic event in either CRPS I or CRPS II patients. SIGNIFICANCE: This study shows that sympathetic-nociceptor interactions, if they exist in patients communicating chronic neuropathic pain, must be the exception.

For some reason, physicians and therapists never seem to take my word for it. Maybe they will listen to The Gang of M. Campero, H. Bostock, and the inimitable T.K. Baumann -- all from the Departamento de Neurología, Clínica Alemana-Universidad del Desarrollo, Santiago, Chile

Oh, and one J.L. Ochoa.

Uh-oh. You may recall that I called a certain Dr. Jose Ochoa a big, fat turd. He bears part of the responsibility for the pollution of the generalist literature out there, just the sort of reading that someone newly diagnosed is likely to undertake. Feeding off of unhappiness like a plump-to-bursting bloodsucking tick, this Ochoa bankrolled a comfortable life with monies from the provision of pimped-out expert testimony -- his general message being that CRPS does not exist. Happily, his opinions have been disallowed or stricken as unscientific in at least three states. I haven't seen a serious scientific notation of his "work" in a good while now. His publications have tended toward the editorial (or letters to the editors), anyway.

In summation, that Dr. Jose L. Ochoa remains a big, fat Turd; the J.L. Ochoa doing actual work, study, and evaluation? He is a Prince, a Peach, a Pear.


  1. I popped in to say Happy Easter... but I must also say,
    I am so sad that you must bear this terrible pain.

    You are such a good writer, it seems odd to say I "enjoy" your writing when often your subject is--and must be-- pain/ful, and yet I *do* enjoy your intelligence, humor, and sharp eye!
    Very much so.
    So, thank you for that.
    I wish there could be a cure for this terrible disease.

  2. Hi ya, Fresca! And a Happy Easter to you, too.

    We've not been able to get The Castafiore to cease and desist with Handel's Messiah, already.

    Fred keeps screaming: "I know, I know, He is Risen, la la la la la! But I'm a-tellin' you, You Dasterdly Diva,'Behold, and see if there be any sorrow like unto MY sorrow. . .' if you don't SHUT UP!"

    Poor Fred doesn't share my cool and consistent detachment, my famed comfort in my own skin.

    I cannot seem to stop writing the same things over and over about CRPS, and consider myself very lucky to know people who are kind enough not to be frustrated by it.

    (i.e., thank you!)

    I hope you are well and busy creating.

    I just made some kickass corn bread. It's warm, soft on the inside, and crunchy good on the outside. Want some?

  3. Oh, god. Handel's Messiah. Someone took me to a live performance and I walked out at intermission--had no idea it was so bloody long.

    Cornbread! (My Southern mother called it johnnycake.)
    Yes, please!
    With red beans and rice.
    Another blogger posted a recipe for that and I am going to make it today.
    It would go with the cabbage apple salad too.

    I don't really like to cook... But my preferred diet of Hostess Suzy Q's is under review at midlife.


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