Primary and Secondary – February 4

One of the things fibromyalgia researchers seem to try to do a lot is to subdivide fibro patients into groups (see Desmeules et al, Torres et al, Metyas et al, Auvinet et al, Spitzer et al, and Doss et al in the library for examples).  They use everything from genetic traits to gait markers to personality traits to sleep disorders to create whatever subsets they can and thus instill some order in the chaos of fibromyalgia: “Yes, Ms. X, you are clearly a type 3a.56, based on your ability to back up, your inability to achieve level 4 sleep patterns for more than 8.2 minutes, your volatile Val158met polymorphism, and your type D personality disorder.”  And then the physician can lay out the recommended management plan, including diet based on your blood type, an appropriate exercise therapy plan, and antidepressant/pain management medications as needed, with the necessary psychological counseling to learn the appropriate coping skills for your specific type of chronic pain, which despite all the possible subdivisions is still going to be chronic pain.  It is a completely understandable desire on the part of people who became physicians in order to ease suffering.

However, after looking at all the different diagnoses besides fibromyalgia that were put forth in response to the question: I’m just wondering besides fibromyalgia what is everyone’s other diagnoses? (see post from January 27, “Multiple Diagnoses”), seeing fibromyalgia diagnoses as simply primary or secondary may be more useful for the patient.  Of the 213 diagnoses named, quite a few seemed to me (an untrained layperson who reads a bit) to be primary conditions many of which have their own chronic pain issues to cope with:

Crohn’s disease Pancreatitis Colitis
Sjögren’s syndrome menopause/perimenopause COPD
celiac diabetes POTS
asthma gastroparesis MS
autoimmune hepatitis hypoglycemia Lyme disease
spinal bifida rheumatoid/psoriatic arthritis Lupus
diverticulitis primary biliary cholangitis

There are more that I’m sure could be classified as “primary” diagnoses.  Since these conditions do often have a chronic pain component, I wonder how fibromyalgia can be distinguished.  Is fibro added when pain lingers longer than expected?  Psychologically, is it detrimental to patients to add a fibro diagnosis on top of a long term diagnosis, such as Crohn’s?  Does that put the focus on pain more than necessary?  Does it give patients more of a reason to look for symptoms, to try to subdivide symptoms all by themselves (“Is this normal? Is this fibro?  Is this Crohn’s?”)

Finally, is it possible that allowing both patients and doctors to focus on the primary diagnoses (rather than fibro as a secondary diagnosis) would facilitate either management or healing by eliminating that psychological chaos that can come with that one more diagnosis, and one that usually comes with a “there’s nothing we can do about it” statement?

Just thinking out loud, but I think if I had any of the diagnoses above, I would not want that additional fibro diagnosis.  I’d like to focus on the condition that can be better managed.  It seems like managing the primary will automatically alleviate anything secondary.