Archive for March, 2007

Fibromyalgia Study

One of our readers sent this information a few months ago. If the study is still going on, and you’re in this area, you may want to call for more information.

Not all studies are bad, I participated in one a few years ago that is receiving national attention now. And I hear of studies all of the time using alternative treatments, such as acupunture, and these treatments and medications are at no cost to the participants. In fact, some even reimburse you for transportation costs. So, this actually made be a breakthrough study.

Here is the information that was sent to me:

A local radio station in SC advertised about a clinical research study being done. To see if you qualify for the study, you call 1-888-41STUDY (1-888-417-8839).

I did not qualify for the study, but I did get some information. It is a 6-month study, where you visit one of the doctors participating in the study every two weeks. There is no charge for the doctor visits or medication.

The medication that they are testing is milnacipran. The drug is already FDA approved and according to my pharmacist is being used to treat depression and fibromyalgia.

Just wanted to let everyone know.

Shirley
(suffer from CFS and FMS)
Chapin, SC

Thanks Shirley,

Rhani
FibCFS Bella Editor

Romantic Ideas When you Have A Chronic Illness

water-lilies.jpg

I received this article from a Bella reader around Valentine’s Day and didn’t really know what to do with it. But, I figured since Mother’s Day and Father’s Day is coming up, maybe some of you folks could use a few romantic ideas.

http://myarticleannouncer.com/go/va.php?article_id=2284

Rhani
Bella Editor

CFS Video testimony

A few months ago, one of our subscribers sent a video link of a person chronicling the challenges of caring for someone with Chronic Fatigue Syndrome.

Caring for someone with severe ME/CFS

A Bella Reader Blog

Here’s another blog from a Bella Online reader.

Enjoy!

Beautiful Dreamer

The Thief of Many Lives by Kathleen Houghton

One of our members email this to me some months back. I think we call can relate.

The Thief of Many Lives

I am constantly on the prowl in search of new victims. I do not discriminate–health care workers, teachers, students, airline personnel, teens, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you.

Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a “good day.”

I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed viruses which will painfully be replicating in your brain. I promise you despair along with isolation and losses far beyond what you can ever imagine.

Your mind will be in a constant “fogged” state, your expression will be unable to express, and your eyes will have a noticeable “glazed over/drugged out” look. You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can’t even string enough words together to make a complete sentence … or one that makes any sense.

I promise you, at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be house-bound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape may take too much energy or be too painful now.

On those nights that I allow you to sleep, you will awaken drenched with sweat and throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur, I will torture you with thoughts of death…. Not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living.

I have also done a few things that you may not be aware of yet. I placed some lesions on your brain (have you noticed how you have difficulty with balance and memory yet?) and have permanently turned your immune system on high. I have shorted out your nervous system so that you have intermittent numbness and tingling which might resemble an electrical current zapping you from time to time.

Now I have you, I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive.

Your family will not be able to give you all the constant care that you need on a daily basis. As for your friends, well, they’re still on that ladder climbing up. I’ll find them soon. By now you must have learned the definition of isolation, if for no other reason just so that you do not have to explain how you feel to others because they won’t understand anyway. Isolation will save you all that energy.

Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to “keep up.” Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable when you seek medical care, any doctor who figures me out will diagnose you and say that what you have is presently not curable.

Now it is time for you to seek out medical care, nation-, if not world-wide. You will give more blood samples and have more examinations than you ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid and accepted by the

medical community and insurance companies. One that does not label you as depressed or say that “it is all in your head!!!” Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the “cure,” mainly because you look like the picture of health. This is my mask of deception.

You will pray for a positive word from current research. Research which you will soon learn is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for the most are Social Security Disability and Medicare.

At one point I may give you a false sense of recovery or remission. let me assure you, I’ll be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo. I would consider this an epidemic, wouldn’t you?

Eventually I will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick.

I AM CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME
__________________________________________________

CFIDS awareness message for everyone & prayer request since I am about at my wits end with this, plus FMS & other things. Not online much anymore but still love all my myspace friends. About to give up my karaoke hosting, too. Lynne

To read more comments visit Lynne’s My Space Page.
http://www.myspace.com/lynnelee

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