I can NOT believe what I have just read on the internet.  CAN NOT BELIEVE that someone from the Associated Press has decided to call my disease a “murky disease” … you see, I have Fibromyalgia, and it sucks.  As if this disease now needs to take another blow to the chest. Now more people will begin to believe again that this disease is made up.  I’m asking for every person who reads my blog to read the rest of this darn post. PLEASE!!!!

In 1990 the American College of Rheumatology (ACR), not Eli Lily and Pfizer, the drug companies who have been accused of pushing a murkey ailment came up  the criteria to diagnose Fibromyalgia. A person has to have chronic widespread pain in all four quadrants of the body AND the axial skeleton.  Plus, a person has to have eleven out of eighteen tender points on their body … that is pressure by 4kg of pressure.  The ACR has a code of ethics, and all they want to do is “to advance rheumatology through programs of education, research, advocacy, and practice support that foster excellence in the care of people with arthritis and rheumatic and musculoskeletal diseases.” [http://www.rheumatology.org/about/codeofethics/index.asp?aud=mem]  These are the same people who brought you Lupus, another disease that does not have ONE definite test.  You see, many rheumatological diseases can be mistaken for other diseases because so many of the symptoms overlap, and many times its takes YEARS to be diagnosed.  So this is why I am very frustrated that someone feels like he can come along and say whatever he wants about a disease that is proven to exist.

If you have a handy Merck Manual of Medical Information, Second Home Edition like I do, you can turn to pages 1717 – 1720 and see that Fibromyalgia is not listed with the other diseases of unknow causes.  But you know what is there?  Chronic Fatigue Syndrome, Gulf War Syndrome, Multiple Chemical Sensitivity Syndrome, and Sick Building Syndrome.  Fibromyalgia is not there because doctors have been able to finally determine what causes Fibromyalgia.

A few months ago I went to see Dr. Daniel J. Clauw (U-M Chronic Pain and Fatigue Research Center at the University of Michigan.)  who is a leading expert in Fibromyalgia.  He invites patients to a Fibromyalgia workshop that he gives from time to time.  Family are invited as well.  All of the patients are referred to him by other doctors who have diagnosed them with Fibromyalgia.  At his workshop I learned that Dr. Clauw was not hired by the drug companies to come up with a disease, rather he was hired by the U.S. Government to study American soldiers who came back from war.  What did he find out after over ten years of research?  That 10% of all soldiers come home with none other than FIBROMYALGIA and Chronic Fatigue Syndrome.  He says that 10% of people from EVERY war come down with these diseases.  He says that more women than men get diagnosed with Fibromyalgia because of the pressure test … men have a greater tolerance of pain, so they get diagnosed with Chronic Fatigue Syndrome instead.  I see this is yet another act of discrimination against women … as in we can’t handle the pain, so we get a diagnosed with a different type of disease.

In Dr. Clauw’s research, he has also learned that people who have Fibromyalgia are 8 times as likely to have a parent, sibling or child with the same disease.  And they are likely to also have another Rheumatological disease along with it, like Rheumatoid Arthritis and Lups.  In my own family this is true.  I have Lups, Rheuamtoid Arthritis and Fibromyalgia on my mothers side, and Rheumatoid Arthritis on my fathers side.  Dr. Clauw says that genes play a huge role in Fibromyalgia.  If I had six children, it was be a certainty that one of those kids would get it as well.  As of now 3-4% of the general population has the disease.  However, many doctors and people believe this disease doesn’t exist.  Dr. Clauw now lectures other doctors not to sell medicine, but to increase awareness of this disease.  Three years ago only 35% of doctors believed in the disease.  Now, 63% do.  Don’t you think its a horrible thing when your own doctor doesn’t believe in your own disease?  Actually, I just found out my brand new Rheumatologist doesn’t beleive in my Fibromyalgia.  I’m totally pissed … and now have to leave him.

Also discovered was that 5% of Fibromyalgia sufferers have had been effected with the Epstein Barr Virus.  (I have!)  The rest have been triggered by auto accidents (I’ve been in a few as a passenger), psychological stress (My mom was bipolar) and hormonal (I have Hashimoto’s Thyroiditis, too much and then too little hormone.)  So for me, it all fits, it all makes sense.  Other triggers can be certain drugs, vaccines, and catastrophic events like war, but not natural disasters.

Want to know what is going on in the brain?  Sensory processing … in lay men’s terms … a problem with volume control.  Fibro sufferes have increased sensitivity to pain, heat, noise, nd elcetrical stimulation.  This is why my EMG test last week hurt so bad … my brain couldn’t handle it.  You know who else suffers from Sensory intergration disorders?  People on the Autism Spectrum Disorder.  My son has Aspergers, a mild form of Autism.  I see what he goes through, and at times I have some of the same issues.  I can not stand to be cold.  I hate loud noise.  I have stopped listening to music on a regualr basis.  I went to a karaoke bar about 14 months ago and had to leave, too loud for me, a person who worked in bars for twenty years without any problem, and who sung at hundreds of karaoke bars across the state of Michigan.

You see, there is descending pathways from the brain … and the “gate” that is normally there is now missing.  So all the pain impulses, all the sensory processes pass through without the normal filtering.    Let me give you an example.  A co-workers relative got hit by a car.  He was badly injured, paralyzed, and almost died.  He remembers nothing from the accident.  His brain stopped the experience of the pain because it was too much to handle for him.  My brain doesn’t do that for me in a sense … when someone puts their hand on my shoulder, I literally scream … it hurts that bad.  Are you beginning to understand?  Regular people need twice the amount of pressure to feel the same pain as a person who suffers from Fibromyalgia.  So the next time you break an arm, double that pain, and realize that is what I’d feel.

When Dr. Clauw looks at an MRI of a person who is experiencing pain, he sees that pain showing up differently.  so, when people tell you “It’s all in your mind” you can have a little laugh to yourself, because, yes it is, but its not imagined.  It is a real documented fact.  It is all in the processing, and not in the imagination.  So screw you Mr. AP guy, for calling this sucky ass disease murky.  The pain pills help with the pain, fatigue and depression that comes along with the disease.  Depression does not cause it, it is caused BY it.

Two important things I have learned from Dr. Clauw:

1. Get your physical activity in.  But stay on a low level, even when having a good day.  If you do too much you make yourself more fatigued, beginning the vicious cycle.  Too little is always better than too much.  Pace yourself.
2. Don’t fight for disability.  You most likely won’t win, and the battle will be too taxing on your health.  Suck it up.

Want to know more about Fibromyalgia?  Go here and here.

Side note: I have tried Lyica … and felt much better.  But, I suffered from a more serious side effect, temporary blindness, so I had to stop taking it.    I don’t like the looks of the possible side effects of Cymbalta, so I am skipping it.  I am awaiting my turn for a clinical trial at U-M to see if acupuncture will work.  I’m scared, but I’m going to do it!

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