LIVING WITH CHRONIC PAIN . PART II
- Janet Bauer
- Jan 13
- 4 min read
The Pain
A white hot poltergeist.
Scorshing and screaming.
Never ending and relentless throughout my body.
Attacking every nerve and fiber.
From the inside out.
THE 'F' WORD - FIBROMYALGIA (fms)
Fibro (supportive tissue)
Myo (muscle)
Algia (pain)
Further defined to include wide spread, ongoing chronic pain, fatigue, (Chronic Fatigue Syndrome–CFS), non-restorative sleep, cognitive dysfunction and over 100 other symptoms (www.fms-help.com) that can affect those who ‘live with it’.
I prefer that to ‘suffer from it’.
To do the subject of FMS real justice, I would have to write a book. I hope that in this small space in time, you’ll understand what FMS is and maybe even be curious about it–or at the very least, understanding what those of us who live with it go through.
This ‘syndrome’ (as it’s referred to) is silent and invisible.
It affects 2–3% of mostly middle aged Canadians and is 6 to 9 times more prevalent in women than men (www.fmguidelines.ca). It often takes many years for an FMS diagnosis.
In my case, it’s likely the onset of my FMS/CFS began over 20 years ago and the severity of it crept up on me slowly, one symptom and illness at a time, until I was unable to function. During that time, I was diagnosed with, and treated for, many other illnesses, prescribed numerous medications and tried any treatment I could, none of which ‘fixed’ what was going on in my body.
It’s All In Your Head.
Aside from a cure, what is the one thing people with FMS want?
For people to believe our pain is real.
People living with FMS/CFS have struggled for years to be believed; by those in the medical community and by family and friends. Our invisible illness, very difficult to diagnose, with no definitive cause or known cure, is all-consuming, debilitating and very difficult to treat and manage.
FMS wasn’t recognized as a true syndrome until 1990, when it was published in the American College of Rheumatology classification criteria. Despite that, many people still believe our pain is not ‘real’ or ‘not that bad’. We are labeled as complainers who are weak, lazy, whiny and who just aren’t trying hard enough to get better.
In fact, we’re the opposite!
We are (or should I say ‘were’) often the ‘A Type’ personalities. Well educated, highly motivated, busy, multi-tasking hard workers. We take the meds, (whose side effects often complicate things more) and try the treatments as they come along. No one medication or treatment works for us all. And if they do, it’s often not for long).
In Lonely Isolation,
is how many of us live. We grieve for lives we once had and are angry that our symptoms and conditions have us living frozen in time as we watch the rest of the world pass us by.
We wake up and live virtually every day feeling like we have the worst unrelenting flu in the world.
Our bodies feel like they’re wrapped tight in a cocoon of fire, lined with nails, fed by a constant current of electrical shocks. Our beds are ‘nests’ made up of memory foam, pillows, heating pads, fabricated ‘bridges’ to keep covers off the most painful parts of our bodies and whatever else we can find to try to make lying down comfortable. If we’re lucky, we might even manage to drift off–for a little while.
We feel like we’re being sucked into a deep, dark black hole that gets increasingly difficult to climb out of.
When we can’t work, some people think we’re on some sort of nice ‘vacation,’ when in fact, managing our illness is the most difficult and complex, emotionally, physically and psychologically draining full time job we’ve ever had.
And it’s not 9 to 5—it’s 24/7/365!
And the pay sucks! Believe me, we would quit this ‘job’ in a nanosecond if we could.
It IS All In Our Heads!
Studies show that the pain receptors in the brains of people with FMS have developed a memory of pain. Therefore, our brains become more sensitive, which in turn means they then overreact to pain signals. We have a much lower threshold for pain (and feel it when there is no reason to).
We are different!
Because of repeated nerve stimulation, our FMS brains change and have abnormal increased levels of certain chemicals that signal pain (neurotransmitters). It is also believed that genetics, infections and physical or emotional trauma may play a role in triggering FMS.
There Is Some Good News.
More research is being done on this mysterious syndrome than ever before. Hopefully, there will someday be a more concrete way to diagnose it, and more importantly, a cure.
In The Meantime, we push on.
We do the best we can to manage each day – and hopefully sleep a bit each night.
Resources:
National ME/FM Action Network
Myalgic Encephalomyelitis–also known as Chronic Fatigue Syndrome)
The BC Fibromyalgia Society
The Canadian Pain Coalition
National Fibromyalgia and Chronic Pain Association
Next Article:
Part 3: What I Do
My full time job is managing my illnesses. I’ll share with you how I do, that, as well as some of the many resources I’ve discovered along the way.
By Janet Bauer . First Published in Island Gals Magazine . 2013 . Volume 3 . Issue 2
