Hi... New here

Discussion in 'Fibromyalgia Main Forum' started by keeponsmiling, Aug 17, 2003.

  1. keeponsmiling

    keeponsmiling New Member

    I'm so glad I found this board. I've only been browsing for a couple of weeks, but I've learned a lot already. :)

    I'm a 37 year-old female and was diagnosed with CFS approximately 4 months ago. I've been treating all these "symptoms" (sleep apnea, allergies, chronic yeast infections, low blood sugar, set-point with weight, dizzy spells, excessive sleepiness during the day, etc.) for years, but never knew what the root cause was. It seemed like everytime one thing would clear up, another symptom would appear.

    When I was finally given a diagnosis of CFS, I was thrilled, strange as that may seem. (Or maybe you all can relate to that). However, being the inquisitive person that I am, I wanted to know WHY I have CFS. I've done a lot of medical research, and I'm determined to get my life back no matter what the cost.

    I was fortunuate enough to find a holistic/alternative medicine doctor who actually listened to me! Over the past few months, he's ordered just about every test imaginable, including hair analysis for metal toxicity. What we found was that I have low thyroid (I was tested twice before but the doctor never did a complete panel $%^#@), inappropriate hormone release from my adrenal glands, hypoglycemia (no surprise), severe anemia (total surprise), and systemic yeast (a problem I've dealt with since childhood).

    With my last visit a week ago, we came to realize that everything points back to the hypothalamus, with the exception of the anemia, which we think is a totally separate issue due to exceptionally heavy periods I started having about a 18 months ago.

    Thanks to a poster here (I can't remember which thread it was), I did some research on narcolepsy and found that I fit the critera exactly. I've been using a CPAP machine for close to a decade now for sleep apnea. But my fatigue has become progressively worse until I finally got to the point where I was sleeping a minimum of 12 hours a day and not really feeling "awake" (I use that word quite loosely) until after 4 or so in the afternoon.

    The "brain fog" was so bad, there were times when I couldn't even recite my own social security number or remember which number to push on my speed dial to reach my husband at work.

    My doctor started me on a very low dose of Provigil, which is a drug for narcolepsy. It works by stimulating certain receptors in the hypothalamus to correct your sleep/awake schedule.

    It's been less than a week, but I can already tell a big difference. I had almost forgotten what it feels like to truly be "awake" before 12:00 in the afternoon! I'm also following a careful diet of complex carbohydrates, no sugar, and high protein. I've found that since starting on the Provigil, I'm not craving sugar and carbs like I was before. I'm hoping that eventually I will be able to start exercising and take off some weight. And for now, I'm continuing with the Chromagen Forte to build up my iron stores and Armour Thyroid.

    I know that I will have to deal with this disease for the rest of my life. But I am determined to remain positive along the way.

    All the best,

    Cheryll Snow
    Chesapeake, VA

  2. kar1953

    kar1953 New Member

    Well, your log in name certainly says it all! You sure do sound very positive. That's great!

    I have fms - dx'd in Feb of this year. Had many symptoms for over 20 years but never hit me full blown till this past Nov. I always wondered why there always seemed to be something wrong with me. One thing would clear up & within days I'd have some other problem.

    It sure sounds like you are on the right track. I'm glad you found someone who listens to you & is willing to run whatever tests it takes to get to the root of your problems.

    I really just want to say welcome to the board. You will find so much info here - to me it is mind boggling at times. I sometimes just can't absorb what I'm reading so I just print it off & read it when I'm not so foggy.

    Hope to "see" you here often.

    Take care.....Kathi
  3. spmary

    spmary New Member

    HI...I live in Courtland, Va. Near Franklin. Do you know anyone in the support group from this area. I went to one meeting of a support group at Sentra. Liked the people but can't drive that far, and husband won't. Thought maybe someone in my area is going and I could maybe hitch aride.If you know of anyone would you let me know please?
    LOL, Mary
  4. Shirl

    Shirl New Member

    Hi Cheryll, welcome to our world. Glad you decided to join in.

    You have sure done your homework on CFS, good for you. You have a great attitude.

    AGain, welcome....................

    Shalom, Shirl
  5. keeponsmiling

    keeponsmiling New Member

    Thanks for such a warm welcome! Everyone seems so friendly and helpful here. :)

    Mary, I'm afraid Franklin is a bit far from where I live, and I don't know of anyone you could go with. Sorry.

    Robin, this support group sounds interesting, and I'm familiar with Maryview Hospital in Portsmouth. Is this a CFS/FM support group?

  6. Mikie

    Mikie Moderator

    I'm glad you found us. This is a great resource. I'm also glad the Provigil is helping you. It doesn't work for me, but it is helping a number of people.

    Love, Mikie
  7. averilpam

    averilpam New Member

    just wanted to say hello, as my daughter, son-in-law and granddaughter live in Virginia Beach, they just bought a house in Indian Lakes, near Chesapeake.

    I was over there in May, it's a lovely area. I've been to Virginia Beach twice now, my daughter is enjoying living there,

    love pam xx
  8. keeponsmiling

    keeponsmiling New Member

    Indian Lakes isn't far from where I live at all. Just over the Chesapeake line into Virginia Beach. The Beach is nice, but I'm partial to our "horse country" out here in our neck of the woods. :)