September 25, 2004
Topic: Fybromyalgia, The Invisible Illness Our last meeting was September 25 where we talked about Fibromyalgia as an "invisible illness". One that others may not recognize immediately when they meet us, but nevertheless a very real part of our lives. On the medical front, I've posted for download forms that I have found useful in dealing with my doctor visits, and a preview of a new test specifically for fibromyalgia. Enjoy. 
Forms for Doctor Visits
All of us have probably had our share of fibro-fog. But when you go to the doctor, you want to make sure all of your medical information gets recorded correctly. Also, you want to make sure that all of your questions get answered. Here are a few forms to help you organize for your next doctor visit:
(All forms are in Adobe Acrobat 6 format) Allergic Reactions to Medicines Medical Team Names & Addresses Current Medications Information to Discuss with Doctor
More Medical News
Corgenix Medical Corporation has announced that it has completed development of a Test Kit for Anti-Polymer Antibodies (APA) designed by Autoimmune Technologies, for the diagnosis of fibromyalgia. This kit, which was expected to enter FDA clinical trials in the United States this September, will be the first serum-based assay specific for fibromyalgia.
Current diagnostic criteria used for fibromyalgia are subjective: localized pain in at least 11 of 18 possible tender points, and history of chronic widespread pain lasting more than 3 months. This leads many people (who do not suffer from FMS) to incorrectly believe that FMS is a psychological disorder rather than a physical disorder. The APA Assay is the first specific clinical laboratory test for objectively identifying fibromyalgia patients. The kit not only identifies fibromyalgia patients but also can give an indication of severity of symptoms in these patients.
This kit could go a long way toward making fibromyalgia a more "visible illness".
He'll Let Me Know When I Am Through
by Joy Budai I threw myself a pity party just the other day.
Of course, no one showed up except in a way.
I whined, I cried, I threw a fit about my lot in life.
My body hurts, my head is pounding, and my nerves are fried.
Then my friend, my one true friend softly replied,
"I know your pain can be a bore,
I know the pain for you I bore.
I never cried or whined or pleaded
because my pain for you was needed.
NOW GET UP, GET GOING with the life I gave you.
Get busy, and you won't even think of leaving.
There is so much more for you to do.
I'LL LET YOU KNOW WHEN YOU ARE THROUGH."
My pain, of course, was still a howlin'
But I faced the day with my face a smilin'.
No matter what, I have much to do.
HE'LL LET ME KNOW WHEN I AM THROUGH.
A Letter To Normals
"Copyright of www.fibrohugs.com. Written by Ronald J. Waller"
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person's time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, whose attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you won't see my scars as you would a person who, say, had suffered a car accident. You won't see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can't see it and do not understand ...
Please dont get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die ...
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for anothers sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times ... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to "lose" the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand ...
Sleep, when I do get some is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And just because I can do a thing one day, that doesn't mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say, "but you did that yesterday!" "What is your problem today?" The hurt I experience at those words scars me so deeply that I have let my family go down again; and still they don't understand ...
On the brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make anothers face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different. I too have hopes, dreams, goals ... and this demon ... Do you have an unseen demon that assaults you and no on else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand ...
Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you ... Please understand ...
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