Fibro World

Dot comes out swinging. Someone hold that hippo!"All I have to do is look at you, and you're in pain!"

Last week, I went to my primary care doctor to check my left ear which was throbbing, and felt like it had fluid trapped in it.  I wasn't sure if I had an ear infection or something related to my fibromyalgia (FMS).

My doctor did the routine checks: weight, height, blood pressures, lymph nodes, etc.  He does concur with my fibro diagnosis, but he hasn't quite internalized it to the point where he is gentle when he does the usual poking and prodding. 

He is always surprised when I wince and grimace in pain, or when my eyes tear up involuntarily when he hits a particularly sensitive spot.

He first pressed down on my chest with his stethoscope.  I let out a little yelp and flinched.  Then he applied "normal" pressure to my neck, which is by far my most painful area where even a light touch feels like being branded by a red-hot iron.  I let out a gasp of pain, even louder than before, and he made his comment about how "just looking at me causes pain."

Normally, I would accept this as the routine comment of an otherwise kind and gentle doctor.  I know that like all invisible chronic illnesses, there are no obvious signs on my body displaying where the painful areas are.

However, this day was different.  Since I started blogging about my experiences with fibromyalgia and chronic pain, I have realized that such throwaway comments do a great disservice to patients who suffer from invisible chronic diseases.  It also reveals that deep down, my doctor was not totally convinced that I am in real pain, and even worse, he may think I am exaggerating or faking.

In the past, I may have just let the comment slide.  But not anymore!  I read Kairol Rosenthal's blog post: Smart Responses to Stupid Comments?  Karirol talks about just this sort of experience -- family, friends and doctors making stupid comments about your disease and how to respond effectively.

So I calmly replied that "looking never hurts me."  I pointed to the areas on my back that were not very painful and asked him to please press on those points, which he did.  My doctor did take note that these areas were indeed not as painful as the others.  He seemed surprised that yes, I have fibromyalgia and some areas of my body called trigger points, are hyper-irritable spots exceptionally sensitive to pain.  

My rheumatologist for example, knows where these fibromyalgia trigger points are located.  During my appointments  she too does an exam, but she only presses on one or two points, and then takes my word for it that my pain is still high and stops pressing.

The lesson I took away from this last visit is to speak up when I disagree with what a doctor says.  Unfortunately, sometimes the pain and fatigue are so unbearable that I can barely say more than a few words during an appointment and fostering an educational dialogue is often out of the question. 

To be really proactive I should have said: "Dr., that's really not very funny. And it's not even accurate."  But the reality is, most of us are programed to be polite little patients and think of the perfect thing to say after the fact.  The moment is lost.  And realistically, in the fibro world, we're usually too consumed with pain, nausea, migraines to be on top of our game.  But now I have a greater self-awareness and while delivering a good kick in the shin might be very satisfying, it would probably hurt me more than the doctor!  I now plan to deliver a verbal punch instead.

How have you made you doctor understand your chronic pain or illness? Is being proactive a good approach for you?