I found this on the internet and wanted to share

A Letter for Doubters of Fibromyalgia

A wonderful woman who I have had the privellege of getting to know over these past few weeks wrote a beautiful letter that I would like all of you to take the time to read. As a fellow medical professional with this same disease, I feel it’s important that the message get out…
I am a 44 year old registered nurse. I want to share a few things about my experience with fibromyalgia and add a few known facts about this illness.

I never ever desired to become ill. I have always been a worker and have worked since the age of 18 years old. I use to consider myself healthy. I hadthe ambitions of becoming a nurse and fulfilled that ambition. It is not the easy way out to earn a degree. As a matter of fact many that enter nursingschool fail or quit because of the constant stress and knowledge it requires to graduate. I graduated with a 3.8 GPA with honors in 1992. I went to workas a nurse and have continued until this day. (I tell you this because if you think that most of us are “do nothings” and are lazy or crazy… you arewrong).

During my course of study, I never had the word “fibromyalgia” mentioned. It still falls short of the curriculum in most nursing schools now. However,the American Medical Association has just recently added fibromyalgia to the medical school curriculum. So, I did not make this illness up and never just decided one day to become a lunatic or a lazy hypochondriac to “get out of life’s” responsibilities. I also am NOT a druggie. I had ONE prescription drug until the age of 39.

This illness is very real. It is stigmatized worse than AIDS ever was. We, (the approximately 10-15 million Americans with this illness), are laughed at,gossiped about, and are made the subject of skepticism. So, fibromyalgia would not be the diagnosis one would make up if they wanted any sympathy. Thinkto yourself…WOULD you want this diagnosis? I suspect not. Many of us affected by this illness would rather not even tell about it because we know thatat least half the people we discuss this with will label us, ostracize us, doubt us, and just plain not believe us. I would make up something else ifI wanted to lie about being ill. I would make up something that people would believe if it was all a big hoax.

From a young age I noticed I required more sleep than others. I just brushed this off and paid no attention to it. I went to my doctor in my early twentiesabout “being tired” all the time. He just told me to “exercise more”. I did that. It made no difference. (Tired has now progressed to chronic exhaustion).

This illness was mild back then. I also developed numbness and tingling in my fingers that would come and go. I ignored this too. I would experiencetimes when I would ache everywhere and would just say “I must have a virus”. I never once thought I had a chronic life altering disease.
This illness affects people with different levels of severity. Mine progressed. They say it won’t, but it does. In my late 30’s while I was stillworking just like now, I became very ill with a “flare”. I had no idea what was going on. I felt like I was going to die. I had pain in my hands thatlasted for about 4 weeks — so severe I would cry. The numbness and tingling I had for years turned to burning pain. I was more than tired. “Tired” wouldnot describe the exhaustion no matter how much I slept or how little I slept. My knees began to hurt to the point I could not get in and out of a tubwithout help. I was hurting all over to some extent. The stiffness of fibromyalgia also sat in about that time. Stiffness all over to the point I couldnot get out of bed without help. “Fibromyalgia” was a word I had NEVER heard. But I was diagnosed by my family practice physician a few weeks later.

I am one of the lucky ones in that I have a doctor who knows that fibromyalgia is real. Many suffer this without anyone to help them.

I have never been the same since that flare that lasted about 6 weeks. I still work with much difficulty and have to support two young kids that came latein my life. Believe me, if I could quit work, I would. I push my body beyond its limits. I suffer pain now on some days that is probably equal to thatof a cancer patient. I look like I have a hangover at work most days. (I do not drink). And believe me, these symptoms were all there before I everwent on any medication. The balance and coordination problems were there. The concentration problems were there. But without medication, I would notbe able to work. Not because I enjoy paying for all the meds and doctor appointments out of pocket with no insurance. Not because I am “addicted” topills. But if not for the medications, I would be bedbound now. The meds do not get me “high” and they actually help me to function with this disease.

So, just because you cannot see this disease does not mean it is not real. Research is putting pieces of the puzzle together now. There are facts outthere which are documented by research. The whole picture has not been put together yet. But it is a disease of the Central Nervous System. FIBROMYALGIAis REAL.

Sleep studies show that fibromyalgia patients never reach the deepest level of sleep. Stage 4 sleep is absent. Studies also have shown images of the brainin people with this disease. Those images prove that even light touch or pressure on our body IS interpreted by the brain as PAIN. They have also provenby brain imaging that every stimulus such as light, sound, touch, and smell are magnified in people with fibromyalgia. It is described as the “volumebeing turned up” in our central nervous system. Studies also show that something called “substance P” in the spinal fluid is present in higher amountsthan “normal” people. Substance P is a chemical that has to do with processing pain in the central nervous system.

I would urge you to please, out of humanity, read some facts about this illness before you assume your co-worker, friend, or family member is a hypochondriac.And please consider also that most of us do not fit the mold for being a liar or lazy. Many many of us have educations, have had or have businesses thatare lucrative, and have worked all our lives. Many of us have burned the candle at both ends for years. We were not sitting on the couch eating bon bons.
Also, many I have talked to the past 5 years have lost homes, relationships, and careers because of fibromyalgia. None of us enjoy losing life asit once was so we can “make up” an illness that you cannot see but WE certainly can feel.

I do not enjoy the inability to participate in my children’s lives as they grow up. I have to stay home and rest while I miss countless activities in theirlives due to severe pain and exhaustion. All I can do is work to make the living and come home and collapse most days. I do not enjoy handing all theresponsibilities over to my husband because I am too damn sick to take care of my kids after working. I am not a hypochondriac, a liar, a “drug seeker”,or an attention seeker. I am a victim of a disease called “fibromyalgia”. I get no sympathy. I carry the same load at work that any other nurse does.

I get no assistance from the government and CANNOT even apply for disability. No one can apply for disability while they are required to keep PUSHINGtheir body to work. So what do I gain from this illness? Nothing but the risk of skepticism and ridicule.

Debra van ness,R.N.