Join Date: Aug 2006
Location: Clay, AL
Started the Journey
Well, after months of thinking I had low estrogen problems, my gyno says I may have chronic fatigue or fibromyalgia.
And, thus I start, well, I guess I was already three steps into my journey. You know the one. The tests, the doctors, then the other doctors.
Hearing stories of women that have to go doctor to doctor to find out what is wrong, well, it was a secret fear. Has been a fear of mine for the last five years since I have felt so drained, like I am getting old. But, I didn't know how a 38 year old was supposed to feel. Maybe this energy level is right for this age.
But, the menstrual symptoms got worse, and worse. This is why my gyno tried estrogen. Well, I noticed this year- and looking back, I think things were bad before, just not noticed- that I didn't plant a garden, didn't plan a spring vacation, didn't even plant flowers, although I bought them and left them on my front porch. Can't seem to do the simplest task without making a mistake, or dropping something. And, I am all the time finding I have written some note to myself with a phone number and a name and can't remember who that is or why I wrote down the number. Lost people's payments also. This is not good for a newspaper.
Then, three weeks ago, it hit hard. Fatigue to the point of not getting out of bed. New symptom of body aches that don't stop after a couple of days into my period. And, after taking estrogen for three days, symptoms just as bad. Can get out of bed, but must have head resting on something. Body aches, hot flashes, thinking problems, intestinal, headache, and now, in the last four days, sore throat. OH, and for over two years, I have been staying up until 2am and sleeping until 10am.
So, after day four, I make the appointment with my gyno and start a medical journal. The night before the appointment, I do internet research and figure I have CFS. And, I cry. Gyno the next day says it isn't hormonal, or at least not all of it, and said he thinks I have chronic fatigue or fibromyalgia. And, recommends a rheumatologist. I go straight across the courtyard of that hospital to make an appointment.
And am told, "Sorry, no availability for new patients until October." And, just what am I supposed to do in the mean time while I wait to get a definite diagnosis? I have to make some major decisions here, like selling my business or not. I can't wait three months.
Well, I call my gyno who says, "Let us try to make an appointment." Same rheumatologist who now says, "not accepting new patients."
Try another rheumatologist recommended by a friend. "Got an availability tomorrow, but sorry, we don't take your insurance."
So, I get the list from insurance. And, one is one I was warned about, all he does it take you off all medicine and pray over you. Another, group of four in one office say, "We don't treat chronic fatigue or fibromyalgia." Well, that's a nice "how do you do."
Finally find one who says, "First availability for new patients is Nov. 1st." Hey, at this point, I will take it.
In the mean time, I call an internist up the road from here. Get an appointment within five days. Good, at least I can have the tests that eliminate all the other diseases. This will help me to make my decisions. I go through the trouble of faxing an 8-page typed medical history from the time I was 5. Telling of my fainting / seizures from vasovagal hypotension, depression I had five years ago. All such. Well, I show up after only getting one hour of sleep. And, find he did not read it. Or if he did, he didn't know it was mine when I arrived and after reading what the nurse wrote down and listening to what I told him, he still didn't connect that it was the same person on those 8 pages.
Told me I have depression. I told him I have had depression, this is not depression. I want to work, eat big meals, go hiking, do my work, go on vacation, I am just too tired to do any of it. And, besides, my legs and arms are aching, with hot flashes and intestinal problems. He says, "many different types of depression."
I told him my gynocologist said it was likely chronic fatigue or fibromyalgia.
He said, "Fibromyalgia is a catch all."
And, I ask, "What about my symptoms makes you think it is not CFS? His answer, "I don't know." Well, based on my reading of other people's journey, I asked him, "Do you think CFS is an organic illness?" His answer was a quick "No." Although he had a very humble demeanor, calling me "ma'am," I was flaberghasted that a doctor would not even recognize a disease that the CDC, not only says is a true disease, but is doing genetic research on. That people with this disease have documented abnormalities in their immune system. That people with this disease don't get REM sleep.
No wonder he diagnosed me with depression, in his world, chronic fatigue don't exist.
Well, this is now doctor two in my journey and doctor's visit number four. (It took my gyno and I about a year to decide more than my hormones was affecting me. I don't blame him, the symptoms were only bad during my period, up until a month ago. Other times had symptoms, just so mild I thought it was over work and age.)
And, do you guys know what I am going to do? Well, first I am getting an expensive, just for CFS, massage tomorrow. Hey, if it works, it's better than anti depressants. And, of course, I am applying all the other diet, rest (well, as much as I can, I work at home and have a laptop to do my work from my bed- most of it) vitamins, taking Ambien to get sleep, and eating better with less caffeine. But, if the massage doesn't make a difference, I am going to take those anti-depressants.
Why? So that I can tell the next doctor that says I have depression that we tried that before. Besides, while my symptoms have been going on a while, in the last week, I felt very frustrated at times at my work load and inability to get it done. And, that frustration has made me, well, emotional.
The journey I heard other women go on, I find myself in the middle of. One good thing from this, I found out I am not anemic, have terrific cholesterol and blood pressure numbers. My electrolites are good. I told him to check for arthritis, even though he didn't think it was necessary. I told him I came to him to get tests to start eliminating diseases. So, let's do it while he has the blood. He said if the test for arthritis comes back negative, then he will know I don't have lupus either. So, I found out some information.
If you are still reading this, thank you for your attention.
And, if you know either of these two things, it will help me:
Why doesn't an endocrinologist treat chronic fatigue instead of a rheumatologist?
And, can anyone direct me to a support group in Birmingham, AL?