Thursday, April 11, 2013

The Stresses of Seeking Medical Treatment for Fibromyalgia

I got a very nice email from a friend the other day.  She said to me, "I hope that your pain is well managed.  It must be difficult to get doctors to not only believe but understand how life is miserable with pain."

What a great friend, right?

While I appreciate her support, I'm not sure how to reply.  You see, the awful truth is, despite all my attempts to reach this elusive goal, the bottom line is that my pain isn't what I would call "well managed."

I mean, I do the best I can do with my toolbox of self-help strategies.  Those include planning, pacing, problem-solving, activity modification and use of adaptive equipment.  Self-help techniques do provide me with a framework for living within the boundaries of my illness-imposed limitations.  They also can help with pain flare-up prevention, at least some of the time.  But is figuring out how to live as best I can with chronic pain really the definition of "well managed pain"?

I think not.  My idea of well managed pain would be a treatment program that over time:

  • decreased my pain and fatigue levels
  • improved my sleep
  • allowed me to perform more activities of daily living
  • increased my capacity for exercise and other activities
  • allowed me to return to normal activities, like work, league bowling, long bike rides and walks, frequent travel, etc.

I truly believe that I am doing as much as I can to manage my pain.  So what is missing?

If you Google "fibromyalgia," you'll find links to many reputable health and medical websites.  One of the first things these sites will tell you about fibromyalgia is that:

  • it is currently incurable
  • your doctor's treatments combined with good self-care will decrease pain and minimize symptoms
  • there are drugs in the research pipeline that may help this painful condition

It's 2013, I've lived with fibromyalgia for almost 9 years now and I know for a fact that fibromyalgia still isn't well understood by the medical community.  This ongoing lack of basic knowledge about fibromyalgia--what causes it, what parts of the body are involved, the exact nature of the bodily dysfunction it causes and how to reverse this dysfunction--all translate to a lack of medical treatments that can successfully decrease or eliminate pain and other symptoms for all who suffer from it.

The second thing they will tell you is that the key to chronic pain management is a multidisciplinary approach, a fancy way of saying that you should be treated by a team of medical professionals.

So do I have a team of medical professionals helping me manage my fibromyalgia?

Once upon a time, way back in 2006, I benefited from this approach for a brief six weeks when I attended an outpatient chronic pain and fibromyalgia rehab program.  I struggled to find the energy and transportation to get there, but it was well worth the hassle.  The program was staffed by a physical therapist, an occupational therapist and a pain psychologist.  This experience became the basis of my current self-help tool box.  It also spurred me on to pursue further study through the online CFIDS & Fibromyalgia Self-Help program.

That rehab program was a good start, but follow-up and ongoing care was lacking once I completed the program.  And the doctor who sent me to the program didn't seem have much else to offer me in terms of treatment.  Which seemed odd to me, especially since other participants in the program shared about the treatments their doctors were offering them, things I hadn't been given the opportunity to try.

So I sought out treatment from another pain specialist, who prescribed a new combination of  treatments for me. But when I tried these options and they failed to bring relief, my treatment came to a screeching halt.  My doctor threw up his hands (figuratively) and proclaimed, "I don't have anything else to offer you." which was delivered with a generous subtext of I'm ending this doctor-patient relationship since I can't help you.  That left me once again searching for a new doctor.

Over the past 9 years, I've simply lost count of how many times variations of this  scenario have played out...over and over and over again.

These multiple, discouraging encounters with doctors--specifically the rheumatologists, pain specialists, physical medicine and rehabilitation specialists and neurologists who claim they treat fibromyalgia--leave me scratching my head and asking:
Why is it O.K. for a doctor to give up and dump a patient when they encounter a medical problem that is difficult to treat?
Is it any wonder that my pain is not well managed when my biggest problem is finding a doctor that understands my pain AND is willing to treat me for the long haul?
Unlike those doctors, I can't just simply throw in the towel.  This is my life and I want and need to do all I can to get my fibromyalgia symptoms addressed and properly treated.  Unlike them, I refuse to give up just because life handed me a difficult medical condition. I know I need medical professionals to partner with me so I can obtain as much relief as possible, so I keep searching for the doctors and other allied health professionals that will help me accomplish this goal.

So what saves me from the ongoing stresses of seeking medical treatment for fibromyalgia? My personal rule to Have Fun Every Day and my written list of fun activities that I enjoy doing despite my chronic pain.

Feeling stressed out by your healthcare too?  Try my personal rule Have Fun Every Day and create your own list of things you love to do that can distract you from the stresses of chronic illness and bring some joy and happiness into your life despite your health challenges.

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Margee said...

Oh Selena I wish I could wave a magic wand and you would be better. I love all your writing. It is factual! Your friend Margee

Shannon said...

Selena, great minds think alike! ("and fools' seldom differ" as the rest of that saying goes lol) but seriously, I wrote a post recently about doctors not doing their due diligence with patients who DESERVE pain relief. In fact, I consider it NEGLIGENT that they abandon patients to struggle as best as we can. All I can do is go to the walk-in clinic to get my medication. That's the "support" I have. And I only get said medication because it was well documented on my file that I had been taking the same meds for years. I count myself lucky that my previous family doctor was so diligent in her notes. She moved away to another Province, hence my being without a Fibromyalgia friendly doctor anymore. See my recent posts.

It's absolutely deplorable, inexcusable. Some of the stories I've heard where people don't get more than OTC meds because their doctor just doesn't believe them.

I just wish it became more mainstream knowledge about how abandoned we are. I find it more than ironic that society touts us as "burdens on society" yet no one seems to want to help! Other than those of us who suffer. Nope, the Powers That Be just want to do away with us somehow, make pain relief medication even harder to get, and make damn sure we stay below poverty level to ensure we can't "get well enough" to start clamoring for attention again.

This irony is so sad. I'm not going to give up though, nor am I going to go quietly.

Light and love to you and yours Selena <3

Anonymous said...

As always your writing strikes a familar chord. I am really struggling at the moment with my health and my pension company who don't believe in Fibro.
However your posts always make me feel comforted that someone gets it.
Lorna x