Chronic Pain is Not a Symptom

I can remember a few years ago when I thought I understood chronic pain. Simply put, chronic pain is any pain that lasts more than six months. But when it happened to me, I responded in typical manner by researching chronic pain to better understand.

It was then I realized how shallow my understanding really was.

For many years, I medicated for nagging pain with over-the-counter NSAIDs. But since my RA decided to get really serious about attacking joints & organs, I have experienced constant, daily and unrelieved pain that just isn't touched by nonprescription pain medications.

I am one of the lucky ones. My rheumatologist asks about my pain, listens, and makes pain management an important element of my disease treatment plan. Through my participation in RA support groups, I have learned that her approach is somewhat uncommon. It is shocking to me that many, many RA patients report their rheums refuse to prescribe pain medications. Some even refuse to refer their patients to pain management clinics, or question the patient's description of pain, saying things like, "You have no joint damage, so you couldn't be in the pain you're describing." It's impossible for me to imagine how I would respond if a trusted doctor said that to me, but I suspect it wouldn't be pretty.

Effects of chronic pain are well-documented:

Sleep disturbances and resulting fatigue;
neurochemical changes that cause ever-increasing sensitivity to pain;
increased tension, anxiety and fear of injury;
weakened immune response;
depression and/or anger;
and more.

Consider that all of the items on that list are effects of Rheumatoid Arthritis (or its treatments) even without chronic pain. Add chronic pain, and it's no leap in logic to assume that one should attack both elements of the disease with equal vigor to achieve best results and a semblance of normalcy for your patient.

I believe that chronic pain is an integral part of my disease, not a symptom. And that treating that pain is as important to my overall health and ability to battle the disease as any of the other treatments I undergo.

I am very lucky that my rheumatologist knows the secret to compassionate treatment of RA and its sister Chronic Pain. I'd say that I wish she could share this secret with other docs who treat RA patients ... but that would be wrong.

Her secret is that she has RA.

RA Treatment and Morton's Fork

Morton's Fork is a term used to describe a choice with equally unpleasant results. The term is named for John Morton, a tax collector in the reign of Henry VII who used the following logic to collect taxes:

If a person chose to live well, he must have plenty of money to pay taxes to the King. If a person chose to live very frugally (or had to), he must have plenty of savings to pay taxes to the King. So, people began to say they were skewered on the prongs of "Morton's Fork".

The term is rarely used nowadays except to describe a Bridge playing maneuver.

I am currently taking weekly self-injections of Methotrexate (MTX), a chemotherapy drug that's been around for decades, and is the go-to drug of choice in attacking active RA for most rheumatologists. MTX has earned a spot as first-line treatment, because in low doses it is relatively safe and relatively effective in slowing or stopping disease progress; stopping disease progress means damage to joints, tissues & organs is halted - that's the golden ring we're all reaching for, and what my doctor defines as true remission.

MTX can cause some well-documented common side-effects like hair loss, mouth sores, nausea, stomach cramps & higher risk of infections. It is also associated with some less common but much scarier problems like liver damage, lung damage, neuropathies and increased risk of lymphoma. The best news where these risks are concerned is that there is a long history of MTX use in the real world, so its easy for me & my doctor to watch for indications of any of the wicked side effects.

MTX is the first prong of my Morton's Fork - I have accepted the risks & unpleasant side effects in hopes of achieving remission.

Unfortunately not only have I not seen remission in 8 months of MTX therapy, but I haven't seen sufficient reduction of disease activity to hold off joint damage. So, Dr. A has advised me that she wants me to try a biologic drug in addition to the MTX in hopes of beating my crazed immune system into submission.

Biologics are (simply put because I am after all somewhat simple) not the chemical combinations that are so many of our medicines invented in earlier decades. They are created through recombinant dna processes and may replicate or mimic the actions of our own proteins, antibodies, and other elements of our body's complex functions. For instance, one of the classes of biologic drugs for RA is designed to "flip a switch" in some cells that inhibits the production of a protein shown to initiate immune response, thereby reducing the damaging inflammation of rheumatic diseases.

Biologic therapies are pretty new, pretty impressive, and pretty promising. But - and this is a great big but - they bring another set of potentially life-threatening side effects, and the added risk that there are long-term health risks that we just haven't seen yet because they are so new.

Biologics are the second prong of my Morton's Fork.

To complicate things even further, I don't get to trade one risky drug therapy for a second risky drug therapy - I ADD it. Biologics are proven more effective when used together with MTX, which suppresses unwanted immune response to the biologic actions.

So in summary here are my choices:

Stay with current treatment, current side effects, current unacceptable results;
Add a biologic drug that will increase side effects, I don't know exactly what it will do to my body in the long term, in hopes of better results;
Toss the whole treatment thing, treat for pain, and wait for the inevitable deformity & crippling.

Geez man, I just wish I could pay my taxes and call it a day.