Knights of Fibromyalgia

[AchinDude]

   

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!

[legotech7]

Every thing you describe in your letter, fits me to the Tee. As if I had written it myself. And of course a few things that are more clearer to me now thanks to your letter. Thinking I was healthy and fit, until I suspected I had symptoms of Fibro. for more than Half my life. Things really got bad about 8 years or so.

Thanks again for posting your letter......

[looneylane]

   Feeling the struggle.

[DatonK]

Wow I have just read this and i for one would love to post this on my facebook page other forums i am member on the message needs to get out there and who are better to tell it than use we live it. Dew to the pain i may not be as fast as i was but with God standing holding me and other with FM we will get this thing at eats at us day and night seen. It will be slow but we will fight till we WIN.

We may lose good men along the way but they will remain in are hearts and make use fight on to the end. We may never see the fight being Won on this earth but those that let God hold them in this place and time can be sure in seeing it from heavens great door way.

I for one want to be know from this day forward as a Knight of Fibromyalgia. I will fight it till i am to weak then i will turn to you fellow knights and ask you to fight it with me.  A word or a hug a joke we all know what helps us. The one thing we all know is that each and everyone of us is riding this road called Fibromyalgia so were not alone.

[ronr]

Just be sure to give credit to MWF when you post it elsewhere.  A link to lead potential new members to our site.

[DatonK]

Just be sure to give credit to MWF when you post it elsewhere.  A link to lead potential new members to our site.

Many thanks added to my page with a link to this site praying my friends will read it and share it. we need more people to stand with use holding us when we are to weak to stand. 

[pffft]

Wow. It is right on. I get that chest shoulder arm thingy and even been checked into the hospital thinking it was a heart attack.

[Robby]

Today is the first time I've actually read this (all the way through), I tried several times, but the fog would kick in and I just could not comprehend what I was reading. My hat's off to Brady. He did an awesome job, I am running a hundred different places to share this (with a link back of course). I would love for all kinds of people to read this. 

[Lonesome George]

This is the first time I have read this also.  Excellent letter of explanation.  I am going to print this off for someone that has no ideal of fibromyaliga, and doesn't believe I am really sice.  He just seems to think I have gotten lazy from when he knew me as very hard working small business owner that required long hours of very hard mental and physical work.

This man is a go-go-goer who never stops, has tons of energy even now in his 70's, never sick, and can't understand someone that is sick but looks fine.

[david78888]

I really like your way of expressing the opinion and sharing the information. 

[old boy]

         I have to agree, you all telling me the same story,  I have lost terhe trust of friends and family. I exclaim how I managed a bike ride, and that's all I hear about. They and I. Too, cannot understand why we are able to do one thing one day and then nothing more until when ever. ? My texting people respond with your last text....
.you seemed like your style wasn't there, your sentences were not together.....hello....neather am I...i fear any time the unit from adult protection is going come take me away. Then you come back together and,like the pain a woman has with child birth,its forgot...
day or two ago I felt great wondering why I have been disabled almost thirty years
hell. I can work. Nothings wrong? Guilt ridden because I am on the public dole. Work so I vision daughter in Europe.
.         Bingo, snap, crash,  dang lying in bed again! Friends saw me biking,he's okay.,,if he's able to do that. . What a fake. Ow....I hurt. Have lost health,wife,job,friends,driving privileges (because I was under the influence of pain meds) I was dropping down on prescribed meds, had a pain attacked. Try explaining that to a judge. Ikeep looking at the going days.God can judge my ex wife for turning my daughters against me   don't need car. Feeling like Job,  why is God taking everything away?

[looneylane]

That is the sad part that people see us do one thing and think we are faking the 99 problems that come with doing that one thing. The "Spoon theory" explains it so well

[ronr]

They might see you riding your bike down one block but they never seem to see you pushing it back or leaving it to pick it up later.  They look for the positive improvement and would just as soon ignore when you are down because that brings them down also.l

[Robby]

They might see you riding your bike down one block but they never seem to see you pushing it back or leaving it to pick it up later.  They look for the positive improvement and would just as soon ignore when you are down because that brings them down also.l

Forget riding a bike, they see you go to the grocery store, and think that if you can walk through the store that long, then you are lying about no being able to walk far. They don't see that you are completely out of food because you've been putting off going because you were afraid of the pain you would go through. They also don't see you lean up against whatever you can find, so you can rest a few minutes before finishing. They see you get home and take your groceries inside, they don't know that you only take in the stuff that has to be kept cold, and left the other bags in the car, because after you got the cold stuff put up, you were hurting so bad that you had to sit down, and couldn't get back up. They see you the next day as you go out to the car to get the other bags, and they think your ok because you went to the store 2 days's in a row. They don't know that you had to have something in one of the bags, and not only did you not know which bag it was in, but you figured  that while you were going you might as well get all of them, instead of making a second trip. They also don't see you confined to the couch the rest of they day because of that trip to the car. So when they see you up and about, they assume your ok, because they can't see inside your house, if you had glass walls, and they could see how you are confined to the couch after an outing they might get the idea, but they can't see that.

[old boy]

Do whatever I can,knights of fibromyalgia. As you know we have good and bad days. Do it, but don't push it.  I have a interesting story. I went to my six month service checking to continue the lyrica prescription, taking my shoes off and getting on the exam table,left me outta breath. Dr could not believe such little took so much. I explained to HIM  that it was chronic fatigue,he didn't believe it,so he sent me for the stress test on the stationary treadmill, I was having a good day,passed with flying colors.
.      Now that he saw the result of the treadmills testing,passed without any evidence whatsoever of a problem. Appears he thinks that I faked the struggle taking my shoes off and labeled me drug seeking and dependency. Got me in a detox program using suboxone. This is my target date to be discontinued, I am terrified. All that pain with out relief of an opiate. Poppycock.