"She's Not Breathing": Fibromyalgia and the Health Care System

I found her motionless, prone on the bed.  She didn’t respond to her name.  Something was wrong.  I checked for any sign – pulse, heartbeat, and breathing.  She wasn’t breathing.

My wife was dying.

My training kicked in and I administered CPR while dialing 911.

By the time the ambulance arrived, Susanne had started breathing again but was mostly unresponsive.  The EMTs did their work and took her to the hospital.

This isn’t the end of the drama.  Far from it.

My wife was diagnosed with Fibromyalgia more than five years ago.  A woman who valued her career almost as much as her family, she was rising in the ranks.  When the Fibro hit, everything changed.

When every extremity is afflicted with pain, it becomes near impossible to carry on with life as normal.  When suffering a severe episode, just getting up from a living room chair can be a tortuous experience.  This is how my wife has lived for over half a decade.

Her career now a memory after years on long-term disability, Susanne had to deal with that reality when a larger challenge presented itself: the perception of Fibromyalgia.

Still a point of much disagreement within the medical community, the affliction is met with skepticism from many health professionals.  Those who have stayed current on the issue have learned it is a real condition, while many doctors remain either uninformed or cling to previous theories.

This became crystal clear over the past month.

My wife’s overdose attempt on the morning of January 1st marked the beginning of the latest chapter in her struggle.  The concoction of medications she had been taking was losing their effectiveness.  New pills were tried, some with little benefits and all with downsides.

Upon arriving at the downtown Edmonton hospital, Susanne was immediately treated for the overdose.  Barely conscious, she waited out the effects of the medication while the medical team kept a close eye on her.

After a few hours, an attempt was made to physically move her.  Several doctors and nurses, ignorant of what Fibromyalgia is, took Susanne’s struggling as a common reaction for someone ‘coming down’ and basically man-handled her.

What they failed to recognize was that her resistance wasn’t based on the typical lashing out someone does in that situation, but instead was caused by the fact her skin felt like it was on fire due to the Fibro and touching her set off indescribable pain.  The saving grace was the one doctor who managed to hear her through the confusion and told the others to let go.

That was the first real indication of what was in store.

In that initial hospital stay and in the course of two days, Susanne saw three psychiatrists.  The first one made the call to admit Susanne in for a 30 day hold.  The second shrink agreed, only to change his mind within an hour and suggest Sue be put on a ‘home visit’ program.  The third psychiatrist, making the final decision at the end of her shift, handed my wife a few sheets of information and basically said ‘see ya’.

Susanne barely lasted an afternoon at home before being taken back to the hospital.  She encountered the same procedure save the detox, and was once again later released to her own devices.

Cancelled home visits and a lack of clear medication followed.  The last home visit – by an excellent team consisting of a psychiatrist and an EMT who found evidence of another suicide attempt – saw Susanne return to the hospital under their suggestion.  By now, my wife had gone literal weeks without an actual meal and any food she did manage to consume would inevitably be brought back up.

One or two hours of sleep within a 24 hour period was the best she could manage.

Even under the strong recommendation of the home visit team, Sue was observed and then released the following morning with another stack of reading material and phone contact numbers.

To review: Susanne has developed severe depression which is a known result of Fibromyalgia.  It is a huge chore to physically move.  The depression has grown to the point that she desires an escape – not from the depression itself, but from the constant searing pain she endures every moment of her life.  She attempted to end the pain and was treated no different than any crack addict who accidentally overdosed.

The medical establishment has begun to recognize Fibromyalgia as ‘real’, yet they default to the single psychological explanation while ignoring the all-too-real physical element.

They fail to see the vicious cycle that develops: long-term pain causes psychological issues to develop; those issues are focused on while the physical symptoms are written off.

‘It’s all in your head.’

Well, yes and no.  Fibromyalgia isn’t imaginary.  There is a definite psychological component to it which feeds off the physical, and vice-versa.  After so many years, Susanne is now at the crux.

She desperately searches for help and receives a list of groups to contact – most of which have nothing to do with Fibromyalgia, but lots to do with ‘feelings’ and ‘emotions’.

As Susanne put it herself: “I FEEL like no one in the health care system understands what Fibromyalgia is, and my EMOTIONS are spinning out of control because of their failure to take what I have seriously.”

After having a front-row seat and watching someone go from starting to feel ‘tingling’ in their arms and legs to being diagnosed with Fibromyalgia and being put on a pill regimen, to developing depression to the point of thinking of suicide as the one and only way to finally escape the excruciating pain, to having to deal with a health care system which not only has an inherent disconnect between mental illness and ‘regular’ care, I am convinced there are many people whose Fibromyalgia-caused suicides have been written off simply as ‘depression’.

It is way past time for the medical establishment to recognize Fibromyalgia as the physical-mental condition that it is.  Until that happens, those afflicted will continue to be misunderstood, misdiagnosed, and mistreated.

Until that happens, Fibromyalgia sufferers like Susanne are at risk.

1 comment:

Steph R said...

I was very fortunate to get excellent care from the Edmonton University Hospital psych unit when I desperately needed it. 5 things I learned that really help day to day: 1. Don't look back, look forward. 2. baby steps. When you are sick, tired and depressed it is normal to only be able to make tiny bits of progress and each one should be celebrated. 3. You can control your thoughts. Imagine a stop sign and place it at any point where your thoughts are going in a negative direction, it takes practice but is so worth it. 4. look for the beauty. Here in Alberta we are surrounded by so much natural beauty and I've enhanced that by creating beauty whenever possible. Something else to celebrate in our days. 5. Depression is a tunnel, walk through it holding the hands of as many loving helpful people as you can find. Other things I've learned: 1. the way you fight this illness matters, currently there are only 'treatments that help' if you have had the illness more than 2 years and that has to be accepted. 2. Fighting it inside is non productive and harmful to ourselves as it tenses up our bodies and makes them hurt worse. So, how to fight? Learn relaxation techniques, watch funny movies (very important if you are feeling depressed) and find some way to still contribute to society. 3. Contributing. For me, I first started with smiling at people and listening to them which had double benefit as it made me feel good too especially when I was suicidally depressed. For what seemed like a long time I could not remember simple tasks like knitting then I had a meds change and those things came back to me which was an enormous blessing. Knitting has been a lifeline from the meditative side of the art, from contributing to society, from wonderful friendships made and from creating beauty! 4. This illness I think trains you to find and enjoy peacefulness, patience and beauty so I believe we are a very important part of this world which is so hectic that most people lack those gifts, we can be a window for them :) <3

FYI: I have been disabled from a job I loved in the mid 1990s because of this illness.

His Name Was Steven