Thursday, October 8, 2009

Fibromyalgia - The Real Monster

Fibromyalgia - The Real Monster

Yep, a real monster. He steals away the things we use to take for granted. It is so real and yet so unbelievable. I am so tired of explaining to people what "is that"? It is still not known in the mainstream of society and still has false information floating around in spite of the efforts made by the many patients who suffer it.

I hate fibromyalgia. It is unpredictable, unbelievable, and invisibile. These three characteristics makes it the single most stigmatized illness on the planet. It makes us look like hypochondriacs because it has designed itself as such. It is a coward. It won't show its face. It won't leave us alone. It hurts both physically and emotionally.

The facts are never discussed which have come to light with recent research. I promise that more information is put on t.v and magazines about the common cold which is a short term inconvenience. No mention of the 10 to 15 million in the U.S. alone who suffer a disease which acts like the aches of 3 kinds of flu, being beaten with a 2 x 4 board, having our hands on fire and tingling, and leaving us in some constant state of exhaustion no matter how much we are able to "sleep". (Also, no mention shall be made of how a sleep disorder is attached which leaves us lacking or deficient in stage IV sleep).

We shall hear no mention of the research which shows the lowered levels of dopamine, no mention of the lowered levels of serotonin and norepinephrine or the increased levels of substance P in the spinal fluid. You will not see a special on t.v. today telling people that pain signals have been visualized on brain scans, and also no mention of the research indicating loss of grey matter in the brain with fibromyalgia.

However you may likely see how a recent study may show that "eggs and milk are bad for us". Then another mention on the news of how another study shows that "eggs and milk are good for us". You will hear all kinds of trivia such as this. However, no mention will be made today about how terrible the pain and exhaustion of fibromyalgia actually is. No comments on how many of us are in pain likened to that of cancer yet we will live a long life with the pain.

Yes, the National Fibromyalgia Association is always geared up for May 12th each year now. But do you see that on CNN? I don't think so. It seems that most of the speaking out is all in vain because the world would rather choose to see us as a bunch of underachieved lunatics who want attention.

I think I should not be so angry and not nearly as verbal if the disease was believed. If believed, would I seek sympathy? No. I would not. I still do not, even though we live in a world which still does not believe us for the most part. I speak not for myself, but for the millions who are not fortunate enough to have a doctor and family who believe them. I speak for those millions. I get angry each time I hear someone say that "Aunt Bessie thinks she is sick with some disease called fibromyalgia, but she is just a hypochondriac because that disease is not real". That is what angers me and gets me to punching keys here on the old pc.

I even have a very best friend with whom the subject of FM is taboo. I cannot say much about it until I can see that she is clearly trying to change the subject. She would rather believe that all the stiffness and knots in my back are "just a back problem". She would rather believe that I am simply "stressed out and anxious". But never that the disease called fibromyalgia is the miserable beast which causes the forementioned symptoms. I can deal with that. But I cannot deal with the disbelief which society and the medical community has in general. The nurse in me may well be much more angry than the patient in me.

So, until the day someone stands up loud and clear with me and joins together to speak to the world outloud, I will continue to write on the computer. It is, at this time, my only means of getting anything out to the masses. (that is, the few of the masses who will even read this).

By: Debra (a.k.a. learnFMnow)


  1. I agree with this! It is a monster.

  2. That was really well written. And so very true, sadly. Some how it needs to be 'glamorized' like some big celebrity needs to have it or someone that they love, but to wish this on someone is inhumane on all levels.

    I am very sorry that you and your friends have to live like this and I hope someday soon they will have a breakthrough.


  3. You are doing such a good work. Keep on with it! Every voice and every typed word is needed! Thanks for calling fibromyalgia a coward - it is!

  4. This is so right on I don't know what else to say!