Living With Fibromyalgia

Do you suffer from fibromyalgia? Do you have a loved one, or a friend, who has this chronic illness? With an occurrence rate of 2-5% of the population in developed countries, it’s no surprise if you do. I write this in the interest of awareness, as we can never be too aware of the debilitating illnesses so many suffer today.

Twenty-six years ago, I was diagnosed with Chronic Fatigue Syndrome. For the first few years, we tried every treatment we came across and could afford. In the end, I was told that I was one of the lucky ten percent who suffer the illness for the rest of their lives.

Lately, the pain has become increasingly difficult to deal with, so I decided twenty-odd years was a long time in the medical research industry and tried to find some up-to-date information on my condition. Things have changed. There’s still no confirmed cure, but understanding has come a long way in the intervening period between now and then.

As it turns out, what I suffer from is called fibromyalgia, which carries with it the symptoms of chronic fatigue. However, the widespread musculoskeletal pain is not considered a part of chronic fatigue these days; it is attributed to fibromyalgia.

So, what do sufferers experience? Some or all of the following:

  • chronic musculoskeletal pain
  • sleep problems
  • cognitive problems
  • depression or anxiety
  • sensitivity to chemicals
  • irritable bowel
  • restless legs

To help supporters understand what their loved one is going through, the simplest analogy is to imagine the aching muscles and fuzzy head one gets when one has the flu. Not a head cold, but a proper dose of influenza. You know how you feel really listless, your muscles ache, and you just want it to stop? Well, that’s how fibromyalgia sufferers feel every day, I kid you not.

The illness is apparently initially caused by changes in the patient’s central nervous system. It actually alters the processing of sensory input to the central nervous system. What this does is intensify the sensation of usually non painful feelings, such as the feeling of your backside on a chair you are sitting on. This becomes painful, instead of just an awareness-level sensation. If one is lying in bed with a quilt on, the weight of the quilt is amplified to the point of being painful.

The cause of the actual changes to the central nervous system are often set off by long-term psychological or physical stress. For myself, it was working six to seven days a week for 12 hours a day doing intensely physical activity (installing commercial flooring). On top of that I was dealing with building contractors who tend to prefer to avoid paying invoices for as long as humanly possible. So, for me, it was both physical and psychological.

Now, one of the biggest issues, outside of the pain itself, is the lack of sleep. Sufferers don’t get the much-needed stage IV non-REM sleep. Sleep deprivation is an old torture method of long-standing, so I’ll leave you to think about what getting through an average day is like.

While there is no outright cure for fibromyalgia, there are many things that can be done to assist the sufferer to manage the pain and psychological impact this illness brings.

The most important one is understanding. The last thing a sufferer needs is some klutz telling them, “Yeah, I get tired sometimes, too.” Whatever you do, don’t be that guy. If you don’t have this illness, you have no idea what a sufferer is going through.

One dear friend of ours studied Bowen therapy, and invited me to let her try treating me. It is the closest I have ever come to hitting a woman. She later related the experience to her instructor. He informed her, in a horrified voice, that treating a person in my condition needed the utmost delicacy and a very mild touch. It’s okay, I still love her to bits, she’s a very dear friend.

The one thing that stuck out to me about what I have learned, is that the easiest way to cause an onset is to induce any kind of stress on the sufferer. My lovely wife and my two beautiful daughters have struggled to comprehend for years what makes me really sick. I had no idea myself. But, that’s the elephant in the room, as it were. Stress.

If we are kept away from stressful situations, we can actually carry out a fair amount of work in a day, painful though it may be. But, the idea of a stress-free workplace is kind of quaint these days, isn’t it? Even the home is likely to be a stressful place. Noise from kids, pets, neighbors, sound systems, you name it, reverberate through every home to some degree.

The funny thing is, when someone is putting pressure on me, it actually physically hurts, and I get aggressive in return. I used to blame this on a bad temper, but that is not the case. In reality, it’s a self-defense mechanism. As much as possible supporters should endeavor to keep the pressure off. We are more useful to you left alone than in bed unable to move, no?

There are things we can do to help ourselves, too. Some exercise, believe it or not, is very good. Some muscle condition actually assists pain management. To this end, I practice on my drum-kit every day. Anyone who thinks that’s not a workout has never played a drum-kit. I come in from the shed soaking wet, even in the middle of winter. Yes, it hurts to play. Quite a bit, too. But, when I have neglected to exercise in the past, the pain has become more of a master than otherwise.

To finish up, I’ll pop a couple of the most useful links I found. I hope someone somewhere might find this post useful.

Article from 2013 on the website of the Royal Australian College of General Practitioners (dictionary required) – http://www.racgp.org.au/afp/2013/october/fibromylagia/

Wikipedia, of course – https://en.wikipedia.org/wiki/Fibromyalgia

The excellent fibromyalgia Network – http://www.fmnetnews.com/

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