The Truth about Living with CFS/CFIDS...
Written: May 16 '01
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Product Rating:
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Pros: There are doctors out there that can help!
Cons: There is no known cure, often is misdiagnosed and not taken seriously!
The Bottom Line: You can view CFIDS as a bad disease, but it changed my life in many ways for the better!
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| IleneG's Full Review: Adult Health Issues |
CFIDS/CFS DEFINITION
You might ask what is Chronic Fatigue Syndrome? According to the CFIDS Website, "Chronic fatigue and immune dysfunction syndrome (CFIDS, also known as chronic fatigue syndrome, CFS, myalgic encephalomyelitis, ME and by many other names) is a complex and debilitating chronic illness that affects the brain and multiple body systems." This disease affects more people than Multiple Sclerosis, AIDS or Lung cancer. It is an auto-immune disease, and is believed to be a genetic disease in recent years.
My Story
I can still remember the day I walked into my doctors office and he sat me down, to tell me about having CFS. It was 1994, and I was 22 years old, and had just had a 1 year battle with mononucleosis.
After enduring numerous painful tests for everything from menengitis to Multiple Sclerosis and Lupus, my doctor smiled at me and said..."Ilene, I have good news and bad news, which would you like to hear first?" Of course after being sick for nearly 8 months with throat infections and gaining over 100 lbs, I said give me the good news, I needed it! He said "Well the good news is you aren't going to die", but then he said, "the bad news is, you probably will wish you are going to".
It was then he told me of my ill-fated disease, the silent disease that not many people knew about. "Yuppie Disease" was what my friends used to call it whenever they heard about chronic fatigue syndrome, but how at 22 years of age could I have that? I didn't understand what was going on, and why it was happening to me. Worse of all, no one had any answers for me! I was branded a person with Chronic Fatigue Syndrome(CFS)!
You might think branded is a harsh word, but actually it is very true when it comes to having CFIDS. You would be shocked to hear of how many doctors feel that this is just some made up disease to cover up for people who are depressed. Most doctors won't even listen to you if you put down that you have CFS or CFIDS on a chart, yet in the late 1990s the Center for Disease Control finally acknowledged CFIDS as an actual disease and should be treated accordingly.
Imagine being told at 22, that you would spend the rest of your life in bed, and to forget about college, or ever feel like a normal human being. It was quite a shock to me, when my doctor told me that I was destined to nothing but pain and complications, and I could only imagine becoming a burden on my mother and grandmother. I was about to graduate from college, and when the doctor alerted the University to my disease they made me withdraw from school for 36 months! Back in 1994, the disease was still so new, that people didn't know if you could contract the disease just from breathing the same air, like mono. Up until the CDC actually declared the disease as being genetic, people believed this had some correlation with mononucleosis!
I was determined to prove my doctors wrong, but how can one do that when all the medications they put me on not only made me walk around as if I were in a fog, but made me sicker! One doctor actually said my weight(which was caused by the disease), was the actual cause of my laziness, and causing me to be sick! My battle hasn't been an easy one, but thankfully it is now becoming more realistic to deal with.
In 1996, I found information on the internet, and found a support group where I lived in Alabama. In the group I learned that many people were going to specialists, and here I was with my Internist, who was a very nice man, but far from an expert. I realized one day that I needed to find an expert, after my doctor actually handed me a perscription for phen-fen, and an asthma ventolin at the same time(after I had complained of having horrible asthma attacks whenever I took phen-fen regularly, and telling him I had seen on the news there was a recall). I called up a woman in my support group and got the name of a great rhuematologist who went and became an expert in CFIDS, because of his clients.
After 2 hours of testing and medical exams with the doctor, he realized I was definitely a Person With CFIDS(PWC). We discussed my options when it came to therapies and medications, and we even talked about my visiting the Cheney Institute in North Carolina, where they had the leading experts on CFIDS. After much discussion I decided to go with anti-inflamatory medication (Prozac was the final choice), and Prednisone for my joints.
After 1 week, I noticed a complete change. I was actually finally sleeping, and waking up on a normal schedule. I noticed I would wake up with less aches, and swollen joints. I noticed I could walk without total agony. This was a first for me in nearly 2 years! I felt like I had lost 2 years of my life and needed to regain it immediately!
I worked with the doctor for the next 2 years on getting better, having both good times and bad times (known as remission and relapse). I learned that staying healthy wasn't easy, yet it was easier than trying to get healthy after an episode of illness.
I learned there were things I needed to avoid, for they caused flare ups, such as Alcohol. For me Alcohol caused illness inducing headaches and I would end up sick for at least 3 days. At first, I didn't want to believe that alcohol was going to be a problem, since I wasn't a heavy drinker, yet when you get a shooting pain across your brain and cannot control the way your body is reacting, you learn to quickly cut it out of your life.
Allergies were things I had to become (painfully) aware of again. For years, I didn't follow my allergy diet as closely as I should,(I mean giving up chocolate, who's kidding who!) yet I learned that my allergies controlled how my immune system worked, and I became very aware of everything I ate. If I broke down and had chocolate, I had to have a tiny amount, such as a hershey kiss, instead of a chocolate bar.
I think the biggest shock to me, was the difference I noticed in the way my brain worked. I was constantly having what I like to refer to as "Brain Farts". I would go days without being able to tell you my name without having to search hard in my brain for it! Simple items, such as counting money, and reading became extremely hard on me, and I even lost some of my humor(only a tiny bit). I thought taking Ginkgo would help, but that actually made me worse, and we still can't find an explanation for that! I felt like I was 80, both mentally and physically, trapped inside of a 24 year old's body!
My friends didn't want to believe CFIDS was a real disease
My best friend was convinced that CFIDS was a joke, because all doctors were diagnosing patients with it. Then one day I took him to a support group meeting, where he met my friend and group leader, who was a college professor had CFIDS. She was a professor in the Business school, until 1990, when she started to forget things, and eventually became extremely ill. I never saw my best friend go into shock, until that day. He talked to people at the support group, and then to the group leader. He finally turned to me after looking into the group leaders eyes saying, "You know, I never noticed until now, but that sparkle you always had in your eyes, is gone. I am so sorry I ever doubted that you were really sick Ilene."
We got all sappy, hugged and then I slapped him upside the head and told him to stop being so mushy (this was a normal thing for us)! It was that day, my best friend finally understood what I was going through, and became a much more caring and understanding friend from that day forth.
My friends now realize that CFIDS is a real disease, and if that is all I taught them, I am happy, because at least they don't judge people who others view as "faking" illness!
My life changed for the better
Yes,you read it right, my life has changed for the better in many ways. I have become a nicer, more caring and sensitive person to others. I learned to live for the day, and not regret anything I do. CFIDS changed my life in many ways, not necessarily all great changes, I mean who likes to get sick tons? But to me, becoming caring, and tolerant, are much more important now than I ever thought they would be!
Information about CFIDS/CFS
Symptoms, some are very easily defined, "CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat, and headache." Other symptoms can vary. I know my personal syptoms were having a case of tonsilitis for 15 weeks, and severe weight gain, without any dietary changes.
For a complete listing of all symptoms for this disease check out the website http://www.cfids.org! This website is CFIDS Association home page, and where you can find a wealth of information. You also might want to check out http://chronicfatigue.about.com/health/chronicfatigue/ where you can find support groups and doctors in your area!
My Hope by writing this review
A few days ago I was realized people need to know more about CFIDS, and realize there are ways to catch it before it becomes a problem! Maybe you are suffering from some of these symptoms and saw a doctor who rolled his or her eyes at you when you said CFS, or maybe you know someone who is suffering and wanted to know more about the disease, but didn't know where to turn for help. I hope I helped someone out there understand, this is a real disease, and there is a way to LIVE with it!
Always remember, I am just an e-mail away if you need to talk or would like more information.
Recommended:
Yes
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Epinions.com ID:
IleneG
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Location: Hollywood,FL
Reviews written: 83
Trusted by: 53 members
About Me:
YES I look tired for a REASON!!
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