After finding out I now suffer from this incurable disease. I thought I would use what I know about the internet, to help anyone else who sufferers from Chronic Fatigue Syndrome. I will provide links below, to help you find all the support you can get. I have to say, I found more information on the web, than what my doctor would even bother telling me about. 


To my fellow sufferers. You are not alone. There are many support groups out there. I guess there can be a little solace knowing that others know exactly what you are going through. I know some will say, it's not that bad for me. Unfortunately, those people are few, compared to those that are bedridden, and missed so many days from work, they are constantly on unemployment.
What is Chronic Fatigue Immune Dysfunction Syndrome?

It can cause a temporary or permanent disruption of your normal home, social, and work activity. Some have even been permanently incapacitated. I've been told, no one knows what causes it, and there is no current cure. In other words, it doesn't affect enough people to try and find a cure for it. (If I sound bitter, I guess I am. Once you get this thing, your whole life is messed up.)

Other names for CFIDS 

  • Myalic Encephalomyelitis (The european name)
  • PWCs People With Chronic Fatigue Syndrome
  • Fibromyalgia (So similar to CFIDS, that they think it's a form of the disease)
  • Gulf War Syndrome
  • Yuppie Flu
  • Invisible Disease
The symptoms may begin with little or no warning. Most who do have it, can recall a defining time, when their symptoms began. For me it was a vertigo attack, that lasted eight hours. Since then, my health has continued to decline.

What are the predominate symptoms?

  • A deep fatigue brought on by doing simple things
  • Impairment of short-term memory (brain fog)
  • Chronic sore throat
  • Tender lymph nodes
  • Muscle and Joint pain
  • Headaches
  • Weakness on one side
  • Unrefreshing sleep
  • Low grade fevers
  • Fatigue lasting for more than 24 hours after an exertion
  • Problems with concentration
  • Flu-like symptoms
  • Sleep disorders (Apnea / Insomnia)
  • Tingling in legs or arms. (bugs crawling)
  • Depression (brought on because of disease)
  • Tender points of pain (there are 18 pain points for FM suffers)
This is just a few, of the symptoms brought on by the disease.

The tough thing with the disease, is that there is no set test that a doctor can give you to diagnose the disease. In eight months of testing for myself. I went from Miniere's disease, MS, Hyperthyroid, Anemic, to finally...Chronic Fatigue Immune Dysfunction Disease.
I also suffer from Sleep Apnea (I stop breathing when I am asleep) This adds to the fatigue.
Note: For Sleep Apnea you can get a CPAP machine to help you breath. See a Nose specialists. Unfortunately my insurance ran out before I was able to buy one. They run around $600 for the cheapest one, and that doesn't include the mask.

Is there a cure?

I am sorry my friends, but as of this moment. There is no cure for CFID's, ME, of FM. I was told they can only treat the symptoms. In other words you're in pain? Take pain killers. If you are totally exhausted? Lay down and rest. 

Doctors to see?

Doctors! Have I seen the Doctors! Get used to seeing many, before you get a final diagnosis. 

These are the Doctors I had to see:
GP (General Practitioner) You need him/her for references.
Ear, eye,  nose, throat, specialists (Ruled out Meniere's This one found my sleep apnea)
Neurologist (ruled out MS)
Rheumatologist (Arthritis doctor. They are the CFIDS specialists)

In conclusion

In conclusion, I have to say...I am not a specialist! I am not a doctor, or an expert. Just someone that has contacted something that has changed my life! I want to go outside, but I can't walk two blocks without getting tired. I've worked thirty years of my forty six on this planet. Staying home is driving me crazy! Not to mention, the stress of the potential of losing my home. (disability, I've been told; is very difficult to get for CFID's sufferers.) 

As I said before, this disease is called the Invisible Disease. You can't see it physically. Most of your friends and family will think you are making it up. That it's all in your head. I've read, that it literally is. Something is happening inside, that has short circuited our bodies. Hopefully, in the near future, they will find out what causes the disease, and be able to stop it. 


Once I find information on any new medications, and treatments for our so called. "Invisible Disease" I will post it on the site. Until then, as I've always said...
Keep the faith, and keep in touch.
Virginia The Lady in Waiting
 
A few Links to helpful sites:

AACFS.org

Government site for CFS

The Vestibular Disorder Association (VEDA)
On this site, you will find what is BPPV, Benign Paroxysmal Positional Vertigo. You will also find out about the treatment to cure it, The Eply Maneuver

CFIDS.org
Great site, has free brochures

The River.com 

Enyden Personal page for FM 
Her personal message to sufferers. She also has a chat for those that need to know, you are not alone

We Are FMily Website
Great site! Lots of helpful information. They have a board, and chat twice a day!

MSN Health FMS website
This site has lots of Info, and a chat board

Melissa Kaplans CFS site
This site will help you find out about what it takes to get disability. She has a excellent check list to decide if you do have CFS.

Yahoo Support Groups for FM/Cfids
Several support groups of every kind. Some are private, but some are open to the public.
 

 
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