Being Chronically Ill is more than being sick chronically-- it is facing a whole new chronically Chronically Ill world. It is facing this world and being forced to become a resident at one of the lowest, if not the lowest, times of your life. It is being blind sided and shanghaied when you are so tired and the pain is unending and you do not understand what the hell is going on.
It is pain like you have never known. Where is it coming from, what is causing it? You cannot move without wincing in pain. Aspirin, Tylenol, Ibuprofen -- they are like water, they don't touch a thing. Nothing you do helps. Must be a flu. I'll tough it out. It will go away. It will go away. You don't know this world yet. But you will.
In this new world you will learn a new language. It is learning, or re-learning, how to do research. It is learning how to do research in this new language. It is reading articles online with one page open to a medical dictionary, one page open to webmd to help you understand what you have just read in the medical dictionary, and a word document open so you can cut and paste info to ask one of your many doctors what it truly means and if it has anything to do with you anyway.
It is learning the names and specialties of an ever growing list of new doctors. It is learning what these specialists specialize in and learning why you are so DAMN special that you need to see all of these new specialists.
It is learning the names, the spellings, the pronunciations, and the uses of an ever growing list of new medications. It is learning how to make a chart on a Word document to document all of the medicines you take, how much you take, who prescribed it and when, if you went off of it , why. Or, god forbid, learning how to make an Excel spreadsheet to keep track of all of the doctors, all of the medications, and all of the "conditions" you have now been special enough to have been diagnosed with.
Chronically, Chronically Ill.
And, this is only the foreword...
Showing posts with label resources. Show all posts
Showing posts with label resources. Show all posts
Monday, February 7, 2011
Friday, August 27, 2010
Changes in Gray Matter
One of the professional journals I check periodically for new information about Fibromyalgia is The Journal of Pain: The Official Journal of The American Pain Society. There are some fascinating articles regarding recent research in the area of pain and chronic pain. Note, to see the entire article most must be purchased. However, they offer very thorough synopses in fairly easily understood text. Mind you these are professional articles meant for professional readers--meaning they use $100 words at times. The gist of it may be understood, however.
The most recent one I found is both alarming and encouraging. Titled "Changes in Gray Matter Density in Fibromyalgia: Correlation With Dopamine Metabolism" Simply put, we have "holes" in our gray matter in the areas of the brain that correlate to the symptoms of fibromyalgia including "enhanced pain perception, cognitive dysfunction (fibro fog), and abnormal stress activity." The author states that this "confirms our previous findings that FM is associated with altered brain morphometry (neuroimaging that investigates the differences in brain anatomy)." [By the way, my son adds this cheery fact: gray matter regenerates, white matter does not ; ) ]
"The proposition that a disruption of normal dopaminergic neurotransmission may make a substantial contribution to the pathophysiology of FM was initially based on 3 key observations: (1) FM has been characterized as a “stress-related” disorder due to its frequent onset and apparent exacerbation of symptoms in the context of stressful events; (2) the experience of chronic stress results in disruption of dopaminergic activity in otherwise healthy organisms; and(3) dopamine plays a dominant role in natural analgesia within multiple brain centers. From: An Elephant Among Us: The Role of Dopamine in the Pathophysiology of Fibromyalgia
The Dopamine Deficiency Theory proposed by Dr. Patrick Wood began with his first pilot studies in 2005. Though his study discussed here was done in 2007 it was not published until June of 2009. I find that lapse in time very discouraging, but I suppose it is typical of the "wheels of progress". At this rate I figure they will have something approved as treatment in another ?!?!, how many years???
But, the encouraging part? They have actually found something that they can point to and say "See, there is something different here. There is a tangible, medical connection that can be seen." It is all in our heads---but they can see it now!!! YEA! And, they are using medications now that act on dopamine and dopamine deficiencies. I believe that what is needed is a more focused approach to determine what a successful treatment strategy will be.
Below are some of my other favorite publications that I have found helpful in my quest to learn more about FMS/CFS. I hope you find them helpful, too.
The Fibromyalgia Network
The CFIDS Association of America
The CFIDS Association of America is the largest and most active charitable organization dedicated to chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS). CFIDSLink, the free e-Newsletter of the CFIDS Association of America is sent to your email account at the beginning of each month. To sign up to receive this newsletter, click here.
Here's wishing you a comfortable, restful, and joy-filled weekend,
CJ
The most recent one I found is both alarming and encouraging. Titled "Changes in Gray Matter Density in Fibromyalgia: Correlation With Dopamine Metabolism" Simply put, we have "holes" in our gray matter in the areas of the brain that correlate to the symptoms of fibromyalgia including "enhanced pain perception, cognitive dysfunction (fibro fog), and abnormal stress activity." The author states that this "confirms our previous findings that FM is associated with altered brain morphometry (neuroimaging that investigates the differences in brain anatomy)." [By the way, my son adds this cheery fact: gray matter regenerates, white matter does not ; ) ]
"The proposition that a disruption of normal dopaminergic neurotransmission may make a substantial contribution to the pathophysiology of FM was initially based on 3 key observations: (1) FM has been characterized as a “stress-related” disorder due to its frequent onset and apparent exacerbation of symptoms in the context of stressful events; (2) the experience of chronic stress results in disruption of dopaminergic activity in otherwise healthy organisms; and(3) dopamine plays a dominant role in natural analgesia within multiple brain centers. From: An Elephant Among Us: The Role of Dopamine in the Pathophysiology of Fibromyalgia
The Dopamine Deficiency Theory proposed by Dr. Patrick Wood began with his first pilot studies in 2005. Though his study discussed here was done in 2007 it was not published until June of 2009. I find that lapse in time very discouraging, but I suppose it is typical of the "wheels of progress". At this rate I figure they will have something approved as treatment in another ?!?!, how many years???
But, the encouraging part? They have actually found something that they can point to and say "See, there is something different here. There is a tangible, medical connection that can be seen." It is all in our heads---but they can see it now!!! YEA! And, they are using medications now that act on dopamine and dopamine deficiencies. I believe that what is needed is a more focused approach to determine what a successful treatment strategy will be.
Below are some of my other favorite publications that I have found helpful in my quest to learn more about FMS/CFS. I hope you find them helpful, too.
The Fibromyalgia Network
The Fibromyalgia Network is a patient-advocacy organization that offers up-to-date research and treatment information, including treatments that are in the developmental stage. All of the materials published are free of any advertisements or unfounded, unsubstantiated, or spurious “cures” and “therapies”.
Membership is $28.00 per year and includes Monthly eNews Alerts, Patient-endorsed physician referrals, Support group listings, Participation in surveys, input into future article topics including their Q&A Column, Free articles and brochures, and of course, Privacy protection.
Adrienne Dellwo, About.com Guide to Fibromyalgia & CFS
Adrienne suffers with fibro, too. She writes this blog having a background in both TV and newspaper journalism and experience researching and writing about health-related issues. She has the resources of About.com and their medical experts to bring the newest information about FMS/CFS to her blog. Her story about life before a diagnosis is a good read.
The CFIDS Association of America
The CFIDS Association of America is the largest and most active charitable organization dedicated to chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS). CFIDSLink, the free e-Newsletter of the CFIDS Association of America is sent to your email account at the beginning of each month. To sign up to receive this newsletter, click here.
Here's wishing you a comfortable, restful, and joy-filled weekend,
CJ
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