Thursday, September 23, 2010

The Fibromyalgia Life Cycle

Fibromyalgia has come a long way since I was diagnosed in 2006. The FDA approved Lyrica a year later and overnight it went from "being in your head" to a real condition...for some medical professionals. Not all jumped on the bandwagon because there is still no definitive test to confirm diagnosis, but it was mildly legitimized. At least there was a sector that believed us, that we were hurting, throbbing, on fire inside, crushing ourselves as we walked, not just crazy or lazy or wimpy. Then along came Cymbalta in 2008 and we were given another win, another "option" in managing raging invisible pain. Savella came along last year and has rounded out modern medicines attempt to give us our lives back. For some these drugs have worked wonders, for others they have caused disaster. For many it lies somewhere in between, but at least the word Fibromyalgia has some sort of an association to the general public. When I tell someone I have Fibromyalgia I say, "You know, the commercials for Lyrica?" and they usually nod their head with a vague sort of recognition, not at all getting it, but at least I don't sound like a lunatic mentioning it for the first time. But Fibromyalgia awareness has a LONG way to go.

As I have connected with hundreds of fellow-fibrates and we exchange stories, methods of management, frustrations and sorrows accompanied with this disease I have become aware of a vicious pattern, what I am calling The Fibromyalgia Life Cycle... The potential Fibromyalgia has to completely destroy a person and take down their life is astounding. Time and time again my heart bleeds as I listen to tales of broken marriages, lost jobs, degrading doctors and denied disability claims. These patients suffer body-wracking pain while they watch their lives flush down the toilet, barely able to get out of bed and do anything about it.

This is the pattern of the worst case scenario, what happens all too often to entirely too many people:

1. A person gets sick, develops horrible pain and it does not go away.

2. They go to the doctor who runs a bunch of tests and tells them they are just fine, nothing is wrong. If they are lucky the doctor believes them and offers them some drug or another to help with the pain.

3. The pain, fatigue and insomnia progress to the point that its all-consuming. Living life as it was before is just not possible and personal relationships begin to suffer, some are even lost as their significant others flee the insanity of a very sick person given very little help getting better. Many refuse to believe or understand the incredible pain and push it off as the patient's fault or a mental problem. The ability to parent their children, maintain relationships and friendships or exist as a normal person dwindles down to nothing.
4. The capacity to do their job is compromised as more and more days of work are missed and important information "forgotten" in the file of fibro-fog.

5. The job is gone, and the health insurance goes with it. Now living on unemployment or disability (if they are lucky enough to have that) and Medicare, all the while the disease progresses and makes life damn near unlivable!

6. SSI Disability claims are repetitively denied due to there being no firm, clinical test to "diagnose" Fibromyalgia and the full impact it has on a persons ability to function or doctors to support the depth of destruction this disease holds over a persons life.

7. Left horribly sick with poor medical options and no income, one better hope someone is still around to offer some support and let them move in... 

And there you have it, the 7 steps to hell! Now many are fortunate enough to have some support network, personal fight, success with medications or alternative treatments or income to stop this destructive cycle in its tracks. But the point I am trying to make is that this can happen and does happen all too often. This is why I believe my strokes were the paddles to my heart to wake me up and open my eyes to how incredibly lucky I am to have survived Fibromyalgia. I am making it my personal mission to lead the charge to change the reality of living with this disease for up to 6 million of us in the USA alone. Way too many still discredit this disease and it is time for this to stop! Science is tick-tocking at a snails pace in figuring out what Fibromyalgia really is or how to cure it, if possible, or treat it at least. We all know it will not kill you, just make you want to kill yourself. So stay strong fellow-fibrates! We are going to change the face of living with this disease. Hold your head high, nurture your aching body and run away from naysayers and doubters as fast as you can...because a revolution is brewing...The Fibromyalgia Crusade is on its way!

Thanks for joining,

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