I was lucky in that I was diagnosed within the first four months of having symptoms. I started having symptoms in July, 2007 and was diagnosed on November 2, 2007.
I was so sick and had no idea what was going on. I was pretty frightened because symptoms had already started interfering with my life in a big way.The only abnormal test result at that time was high ANA which prompted my doctor to refer me to a highly respected rheumatologist in Berkeley to be assessed for Lupus.
I had prepared a 5 page list of symptoms as well as my family history of cancer.
As the nurse brought me back to the room, I glanced into an office where I saw the doctor reading through my symptom list. I was pleased he was taking the time to read it before coming in to see me.
My Internist had put me on a high dose of Prednisone to see if it had any effect. It did have a positive effect because my adrenals were in such bad shape. Not two years prior an acupuncturist had me do testing to see how my adrenal glands were performing. The results showed as late a stage of adrenal fatigue as one could get without being full blown Addison's Disease. The acupuncturist said at the time "I'm surprised your able to function".
The Rheumatologist entered the room and said "I think you have Chronic Fatigue Syndrome". I was SO relieved and happy! I said "Thank goodness. I am so relieved to hear this! I thought I had something serious!" He looked at me somberly and said "this is a serious and debilitating illness with a bad name that is demeaning. It's like HIV but it isn't. It's like Hep C but isn't"
When his enthusiasm didn't match mine I became confused. He continued "there isn't anything we can do for it and there isn't any cure". Something got through because I then asked him "What will my quality of life be like?" He was silent for a moment before saying quietly "I don't know". That got my attention.
These were some things he said in during that appointment that have remained with me and I use as guides:
1) It isn't your fault, its your genes.
This was huge. For many, many nights after I would think "what if I never did this or what if I'd never done that". I even asked him if something I did caused it. He said no. I have since come to realize there is a genetic predisposition to this illness. Certain environmental factors/stressors caused the gene to turn on.
2) Do/Eat what feels good and avoid what doesn't feel good. He said to pay attention to how my body feels. He even mentioned locations. He said some patients feel better in certain locations.
This was even huger (is that a word?). This has guided my journey through this illness. As I started treating various infections I had to learn to differentiate what was a herx vs what was simply "bad"for me. As an aside CFS doctor's are starting that for those people at the severe level pushing through a bad herx is a bad idea. It puts too much stress on an already struggling body.
3) Learn to pace yourself. Don't push through fatigue or other symptoms.
I told my doctor that I used to be really active but that now even walking for 20-30 minutes brings on symptoms. I told him I get woozy after 10 minutes but push through it. He looked alarm and said do not do that. If activity brings on any symptoms stop.
4) Get involved in Clinical Trials. Experiment. Learn all you can about this illness.
He told me about the Valcyte trial at Stanford.
5) Sleep is critical.
Then he said I have nothing else to offer you. I'm sorry. And handed me a prescription for Prozac (which I couldn't tolerate).
I have since learned a whole bunch more but will stop here for now.