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Chronic Fatigue Syndrome

or
No, taking a nap is NOT going to make me feel better!
As we enter this holiday season, I feel that we should all pause to count our blessings.  Share with someone just how much they mean to you.  Make a list of all the things you love about each member of your family and wrap it in a box for their stocking as an extra special present.  Be generous to those that have less than you and feel the joy of giving!
 

Living with CFS is probably the most frustrating thing I've had to tolerate in my life.  This includes long hours working in the ER, raising two girls who are now teenagers, moving every time the Navy transfers my husband, and a plethora of other things.
I have taken to calling this the DD (or Damn Disease).
It has stopped me from pursuing my chosen career of nursing. (27 years working in Emergency Rooms in several parts of the country)
It keeps me from doing things with my family, because I'm just TOO tired. Every day I feel like I have the flu: low grade fever, body aches, sore throat.
I also now have short term memory loss, numbness in my left hand, swelling of my fingers every morning, and my asthma,that I had as a child, has returned with a vengence.
It has put a strain on my marriage.  It took about a year and a half before my husband realized that I was really sick.
I, personally, am so tired of having people tell me to: "shake it off", take a few days off and you'll feel better, why not go to bed early tonight and you'll be OK, don't think about it and it will go away (if only), you don't LOOK sick, and my personal favorite- Take a nap if you're tired. There are also many variations on the same theme.

Just so you can be informed a little about this disease I decided to have a page devoted to the symptoms and frustrations of this disease.  As of yet, science has not been able to determine a cause or a cure for CFS, and most treatments are symptomatic or experimental.
The Center for Disease Control  (CDC) and the National Institute of Health (NIH) have both acknowledged that CFS can be a debilitating disease, however the Social Security Administration and most insurance companies have yet to realize that this can be a disabling disease and getting disability insurance (to which I have contributed a healthy sum over the last 27 years) is something most people with CFS have to fight for through several denial's of benefits.  The interesting part of this conundrum is that most people who have this disease don't have the stamina to fight for their rights through several hearings and after having their income drastically depleted, they do not have the financial resources to retain a lawyer who specializes in disability claims.
(Get's better all the time, doesn't it?)
Even better, no two people with CFS are likely to exhibit the same symptoms, making this one of the most difficult diseases to diagnose.  Usually, after everything else has been ruled out, CFS is what's left.
The CDC defines CFS by the following guidelines:
" A thorough medical history, physical examination, mental status examination, and laboratory tests must be conducted to identify underlying or contributing conditions that require treatment. Diagnosis or classification cannot be made without such an evaluation. Clinically evaluated, unexplained chronic fatigue cases can be classified as chronic fatigue syndrome if the patient meets both the following criteria:
1.Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.
2.The concurrent occurrence of four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. These symptoms must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue."
                                       copied from the CDC's CFS pages

Now, that should make it as clear as mud, doesn't it?
 

The eight primary symptoms described in the CDC's case definition are listed above. Other symptoms common to CFIDS are listed below (please note that most PWCs do not have all these symptoms and that they are not required for diagnosis). PWCs have cognitive problems in addition to difficulties with concentration and short-term memory (such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning). They also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal as); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); menstrual problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; feeling in a fog; fainting; muscle twitching; and seizures."

Many doctor's are unable to diagnose this illness, because it mimics so many other problems.  I have been particularly lucky that my MD was willing to keep looking until he figured out what was wrong with me.
Personally, at the time I thought I was losing my mind! (I know many others have felt the same.)
Now, we're looking for a specialist in CFIDS (Chronic fatigue and immune dysfunction syndrome, same disease and yet another name) to supplement his treatment of me.
There are several fine reference sites on the web about this terrible and misunderstood disease for your further education and reference.
The CFIDS Association of America
The CDC (Center for Disease Control and Prevention)
National Institute of Allergy and Infectious Diseases Resources (NIAID)
This page is written in easily understood language that would be helpful to those not in the medical field.
Medical Professionals/Persons With CFIDS - yes there are many of us out there!  It seems that medical personnel have an affinity for this disease, perhaps because we come in contact with so many people?
CFS Webring - Many sites supportive and personal stories of people with CFIDS.  Lots of information on these pages of a more personal nature.

Well, this has been my story.  There's no conclusion so far....... I am learning to take one day at a time and appreciate the good days when I have them.  (This is especially difficult for me, as I never used to get sick and I never had to take medication other than an occasional aspirin).  My family is learning to cope with the fact that I may never get better, as am I.  We are slowly adjusting to a dramatic decrease in income as I can no longer work even part time in the ER.  I am slowly learning to swallow my pride and accept help when I need it, including disability checks while I'm waiting to see if I'll EVER be able to return to work or have to start the battle for permanent disability benefits.

Important request for our guests.
Want to help support research for CFIDS? An easy way to do this is to visit Eyegive every day.  By becoming an eyegive member, and passing the word along to others, you’ll unleash the power of the Internet to help us raise funds to fight this terrible disease.
These daily moments of kindness are paid for completely by advertisers. There is no cost to you and it takes less than 5 minutes of your time.
Thanks in advance for your help.

If you have any questions or would like to share your experiences with CFIDS you can email me below.  I hope I've been able to help some of you to better understand of what this disease is capable.
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Books available for reference or further information from Amazon.com.

Running on Empty : The Complete Guide to Chronic Fatigue Syndrome (Cfids)
by Katrina H., Phd Berne
Synopsis:
Frequently misdiagnosed as depression, Chronic Fatigue Syndrome (CFIDS) is actually a biologically based illness with no known cure. This fully revised edition of the award-winning Running on Empty provides the most up-to-date definition of CFIDS: its history, possible causes, and effective treatments.

50 Things You Should Know About the Chronic Fatigue Syndrome
by Neenyah Ostrom and Neeyah Ostrom
Synopsis
In the first book to give all the facts on the worst medical crisis of our time--which has already stricken 12 million Americans--the author of What Really Killed Gilda Radner? probes the facts and answers questions about the misunderstood syndrome called the Yuppie Flu, Epstein-Barr Syndrome--and "AIDS minor." Exclusive update for this edition.

The Doctor's Guide to Chronic Fatigue Syndrome : Understanding, Treating, and Living With Cfids
by David S. Bell
Synopsis
Written by the nation's most recognized CFIDS authority and officially endorsed by the CFIDS Association, this book is the definitive, up-to-date guide for the three to five million people who suffer from Chronic Fatigue/Immune Dysfunction Syndrome. Now at last, anyone touched by this illness can have the solid information they need to understand and live with CFIDS.

These are my favorites.  There are many others you can choose from a list of what's available at Amazon.com by searching for Chronic Fatigue Syndrome.


 
 

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