A letter from the Knights of Fibromyalgia
written by Brady, aka PizzaMan242
Suddenly, in the middle of doing some small task, sharp shooting pains begin in your chest that start traveling down your arm and it is very hard to breathe. Your first thought is a heart attack. You go to the ER and they say you are fine, it is nothing. The next day or a week later it happens again. Again they say you are fine but this time they give you a referral to a psychiatrist. Now they think you are imagining the pain, yet you know it is very real. What do you do? There is always a psychological aspect to the experience of pain, but this does not necessarily mean that the source of the pain is rooted in the psyche.
What I have just described is a very common Fibromyalgia flare up. Yet they only look at you as if you have a screw loose. They do not even check to see if it is Fibromyalgia. They look at your heart and other physical problems that could cause this pain but find nothing. They could perform a simple pressure test to eliminate or confirm Fibromyalgia but you must first navigate a maze of other tests.
Doctors and others in the professional fields label us as depressive personalities and prescribe anti depressants, then are confused when they do not have the desired effect. Probably because at the root we are not depressed, yet. You begin to doubt the doctors and yourself. They say they cannot cure it, and they can only treat some of the symptoms with a limited degree of success.
Your chest still hurts, you can hardly breathe, your shoulders hurt and the pain is traveling down your arms to your hands. Your hands are slightly swollen and discolored, your fingers are numb, your legs are killing you and there is a burning sensation in them. The abdomen is sore to touch, the bowels are churning, and it feels as if you have been shot through the middle with a rocket. Then when we ask for something for the pain, because by now it has become a constant pain gnawing at your very being. Then they label you a drug addict and believe you are faking the pain to get drugs. Now they think we are just in it for the drugs and if they do give you something for the pain. Then the DEA starts watching your doctor's prescriptions, making the doctor afraid to prescribe more potent medications.
What do we do then? We try to describe it for our doctors and they in turn tell us we are not active enough, we are depressed, so exercise and a mood change should straighten you out. You follow the doctor's and therapist's directions completely, yet when all these things are done you are still in pain only it has gotten worse. You are now almost begging for something to kill the pain. Instead you are given massage therapy, heat therapy and maybe if your lucky pool therapy. None of these will work. Only the pool therapy will give you temporary relief, with it's blood warm waters and gentle exercises. Yet even this fails, you find yourself going into a flair as soon as your body cools down. At each different therapy you are greeted with the following. Oh no problem I have seen people come in here in wheelchairs and walk out on their own two feet. Wow, you think this must be the one. They have such high success rate, But sadly with each one we see an escalation of the pain. No matter how good the treatments feel, the effects are only temporary and your back in the same old routine of pain and exhaustion.
A simple pressure test on the back and shoulders will confirm the presence of an invisible serious illness called Fibromyalgia. Still, most sufferers go to many doctors and go for years without a diagnosis. Why?
We have to pay thousands of dollars we cannot afford for tests to eliminate other possibilities. Why does it take so long, everyone knows the test? Why can't they confirm it? Are they afraid of us because they cannot cure us? Well are they?
For the medical community this disease is a mystery. No one knows what triggers it or where it is in the body, they have their theories but nothing conclusive. Many doctors refuse to believe that it exists since it lacks that evidence. Others believe but do not want to treat it because there is no clear answer. Yet they are the ones we must turn to and put our trust in, only to leave us just hanging. Why?
Again it is because they do not know the why, how, or where to begin. They only know that we are in pain and we tend not to exercise because it causes even greater pain. Nevertheless, we must exercise. So we do so we can still stand and walk, We know we must do that much, yet they want more so we try, why? Because that is what they tell us to do. Some even believe that the more we exercise the better the chance is to be cured. The only thing they have right is that we do need to exercise although it hurts, we just have to learn to pace at our own individual level. There is no cure or even hope of major relief.
Searching for someone we can get to help us turns into a full time job. Hundreds of dollars are spent on prescribed drugs and therapies that do not help. Sometimes they are damaging, causing side effects that build until we become intolerant of most drugs and even just over stretching a little one time, can set someone back for months.
No money is being spent to research a cure, and no panel has been formed to study the effects of fibromyalgia. It is almost as if we are Lepers, banned to living a nightmare existence from which there is no escape.
The pain wakes you every two hours through the night and the days are spent in a barely functional fog. You do not feel safe to drive and even the short ride to the doctor with a friend driving increases the pain. Then only when the overwhelming tiredness consumes you. It is the same as always, 3:00 o'clock in the morning. Only to sleep for 2-4 hours, more if your very lucky.
Fibromyalgia remains a very devastating but invisible disease. It is debilitating because when we try to do anything we are in fact hurting ourselves because our muscles cannot heal themselves. Instead we are risking triggering a flare up that could last a day or even a month. Some are bedridden by the effects of this disease. Unable to do the simplest of tasks. Some take the antidepressants and after years of taking them suddenly start thinking that suicide is in fact a really good option, and sadly some have taken that course. May their souls find peace.
Everyone says that you look fine. Your employer, if you are still able to work at all, questions why you can barely do anything and then implies that you are slacking on the duties you once could do without a problem.
How can something that cannot be seen or found in a x-ray or a blood test be so devastating? We do not know. We just know that we are in pain and no one wants to help. Those who are willing to try to help are few and far between. Even then we are forced to weed through the charlatans selling their Snake Oil Cures. That is how rare it is to find a doctor who really wants to try to understand and help you. Yet even he cannot cure you or even lessen your pain.
We who suffer from this disease wonder when somebody will take notice that there is not a few of us but millions. Yes, I said millions. They can treat some of us with a couple of Advil but there are those among us who take Morphine and it does not stop the pain. The medical community only sees the ones who are getting by taking Advil and walking for 30 minutes or more per day. Some of us cannot walk for 10 minutes without a break. Some are even worse.
You stand to lose your wife, husband, family, career and your home, because this disease does not allow you to function enough to take care of all these things, to protect them as you always did before.
Your friends do not want to be around someone who is constantly sick and cannot go out to do things. No single person could imagine the multitude of sordid symptoms, let alone millions of people from all over the country and world with identical symptoms. Surely no one would choose to live like this.
We call on you to help us draw attention to this. We are tired of being ignored, and watching those among us who we call friends deteriorate further and die, but not from Fibromyalgia. No, that is not the killer, it just makes you wish you were dead. No the drugs that we take have a cumulative effect so that we get diabetes, hypertension, kidney disease, all caused by taking the wrong drugs but they cannot tell us what the correct drugs are. Nor will they admit that the drugs you have been taking are the root cause to your more mundane problems.
Please do not let another one of us fall by the wayside because we are not a majority and Fibromyalgia is a little known disease that is "all in their head" until the devastating effects strike you personally.
Acute pain protects life, Chronic pain destroys it." Always remember this.
We the Knights of Fibromyalgia stand before you and ask there be an accounting, a task has been set before you. Are you willing to pick up the sword and aid us in our fight for recognition.
Why do we call ourselves Knights, because like the Knights of old we too are given a formidable task. The task to finally gain recognition for our cause. Our swords are our words, our steeds are our computers as we spread our cause from one end of the globe to the other. We must not fail.
We are the Knights of Fibromyalgia!