This is long but I want to introduce myself :)

Discussion in 'Fibromyalgia Main Forum' started by nayray, Mar 26, 2003.

  1. nayray

    nayray New Member

    My name is Renee and I'd like to tell you a bit about myself since I
    feel like I know many of you already from all of your postings. I was
    recently diagnosed with CFIDS after almost two years of tests and hassle.
    I have spent most of my adult life working in the medical field in some
    capacity so it was amazing to me that it could be so inaccurate in finding
    the cause of my symptoms when they were so very real to me. I had my
    second child in February of 2001. This little guy NEVER slept. He was up
    all of the time and I knew that I was getting run down but I thought
    that I could combat my general fatigue by merely getting naps whenever I
    could and eating healthy foods. I got a bit of a bug in late spring of
    that year---headache, achy bod, sore throat, ears were clogged and sore. Well,
    the ears unclogged for the most part--I think I did a cycle of antibiotics
    but I don't recall for certain, but the rest stayed. I also started
    getting very dizzy with what people call vertigo. I'd had dizziness and
    headaches a few years back (1998) that sent me to a local neurologist who did
    an MRI, ENG, and sinus x-ray but everything was normal/negative. The
    neurologis chalked it all up to stress and put me on an analgesic for
    the headaches and Ativan for the stress. I took them as directed for
    several months before deciding that I didn't want to be medicated all
    the time and simply stopped taking the Ativan which was not especially
    fun. The analgesic I used as needed for headaches since Motrin or Tylenol
    didn't work on these bad boys at all. I figured I should follow up with
    a neuro since the headaches and dizziness seemed similar to those in '98
    but I didn't want to see the same guy that just wanted to dope me. The
    new neuro ran another MRI to compare and that was also negative. By this
    time I was also complaining of aching and fatigue as well as a numbness/
    weakness/tingling in my left arm and sometimes even my calves. He did an
    EMG, auditory testing, CT of head, sent me for a cardiac workup which
    showed a borderline mvp but nothing else.I also had this weird test where I lay on a table
    in a darkened room where the tech asked me questions while pouring running
    water in my ears. The only thing these tests turned up was a minor vestibular
    disturbance in my left ear. Soooo, nothing wrong. No MS. I was pretty
    convinced that I had MS from searching these symptoms on the internet
    but the neuro said that the MRI is very good at ruling it out. I went
    back to my primary care physician (pcp)in June. My primary was a physician
    that I had worked with for many years who I considered to also be a
    friend. We ran a bunch of blood work
    including the tests for Epstein Barr and thyroid.At this point I was
    adding sore lymph nodes and major fatigue to the list. Nothing. In August, I
    got the "mystery rash" that was plaguing a lot of area schools. I saw a
    dermatologist for that who diagnosed me with fifth's disease (parvo). He
    ran blood for that as well as a rheumatoid test and a test for Lupus...I
    think he also ran an ANA. Parvo was positive. The parvo got my joints
    aching and a fever. These went away in about ten days. It did, however,
    represent itself again about three weeks later which seemed odd but I dismissed it.
    In September I had my first real "episode". I can't really explain how
    bad I feel and I guess I don't have to with you folks. I found out the
    REAL meaning of fatigue--and it's not just "tired". I was so dizzy that
    I could barely stand or lift my head. The headache wasn't AS bad as it had been in the past but I hurt from head to toe and was very depressed and anxious. I
    could barely swallow. My legs were "weak" and trembly. I placed weak in
    quotes because even though my left arm and legs felt weak, I hadn't
    actually lost any strength in them. I could carry the baby or lift a jug
    of milk but I was BEAT. I took quite a bit of time off from work over
    the next six weeks. That was, by far, my worst episode. I've had milder
    ones since then but nothing like that one. I went to the pcp again and
    he tried to tell me that I might have allergies and gave me some samples
    of Zyrtec! I left and decided to switch practices. I went to see another
    doctor that I had worked for. He is an internist as well as an infectious
    disease specialist. He's probably one of the bigger Lyme disease specialists
    in the North East. I had been tested for Lyme, by the way, but he did
    more extensive tests as well as repeating the thyroid, rheumatoid, blood
    sugar testing, and cbc. I was complaining about a new pain in my hip
    area that hurt when I walked mostly. I went to see a ortho for this at
    pcp's suggestion. We did x-rays--negative. I had a CT of the lower abdomen
    since he was concerned that it was more in the groin area. I also saw
    the ob/gyn who did an exam and an ultrasound. All negative. Then I had a
    MRI of the abdomen and even a bone scan! Negative. Well, bone scan showed
    some arthrits in my neck. Neck didn't hurt til he told me that! :) I
    went back to my primary---thoroughly defeated. I said that for the most
    part, the dizziness and headaches were controllable. I was not having
    restful sleep at all but I didn't want to take sleeping pills. I was
    concerned that my hip was hurting and my lymphs---it just seemed like
    one thing after another. He asked me if my throat always felt as though
    I was about to get a cold--a little sore. I said yes. He said " I think
    we're getting into the dangerous area of chronic fatigue". I said, "That's
    real?" He said that of course it is real. I said that I'd had the test
    for Epstein Barr and it was negative....the other pcp said that was a
    test for chronic fatigue. New pcp said that is not the case at all. I
    left there and went home to read what the CDC had to say about this
    Chronic Fatigue Syndrome. There is NO question in my mind that I have
    this. It may sound silly but I was actually relieved at first. I felt
    like I'd finally found a reason why I would have all of these symptoms
    but that "nothing was wrong" with me according to diagnostics. Since
    then---that was around January, I've been reading everything I can get
    my hands on. You guys are the best there is. I consider myself lucky to
    have had it as easy as I have compared to some of you! I hope I can
    contribute to your site with as much quality information as some of you
    have and that I can offer my support to whoever may share this horrible
    diagnosis. I'm just outside of Philadelphia, PA. I'm doing ok right now
    although I was recently told that my borderline mvp is now mvp with some
    mild regurgitation so I'm concerned about that. I started taking some
    vitamins from Prohealth last Thursday that are supposed to be for CFS/FM
    and I actually have a little more energy. I learn something new every
    day, mostly thanks to all of you. So, I want to thank you all and let
    you know that if there is ever anything I can do or say to help out---
    I'm here. I'm a network engineer now, computer specialist for the last
    five years, so I'm available
    to help out in that respect as well. I only say that because it's obvious
    that you all need computers to maintain this contact and it's always
    helpful to know the "specialties" available in a community. At this
    point I'm trying to figure out which direction to go in now....I know
    there are some additional tests that I should have but I'm not sure what
    they are specifically so I don't want to run off to the primary having
    bloodwork, willy-nilly. I don't know if I want to see a naturalist (
    spelling) or not. I shy away from pharmaceuticals for the most part but
    I don't know if I'm convinced that everything can be controlled/cured
    by natural means alone. I'm just kind of soaking it all in right now--
    trying to find my way. Thank you all, ever so much, for the support you
    didn't even know you were giving me!

  2. phenom

    phenom New Member

    hi renee, welcome to our little community! wow that was long! lol. just wanted to fly by and say a quick hello.

  3. kellbear

    kellbear New Member

    I am so glad you found us. I am fairly new myself and your story sound a lot like mine. I still have not been diagnosed yet but I am going to a Rheumatologist. I guess they can help with a CFIDS diagnosis. I have been tested for everything else. It gets frusterating. You can read my story if you click on my name and read my very first posting. You will see a lot of information on here for ways to treat your CFIDS. The best thing to do is find something that works for you. A lot of trial and error. I have figured out some things that trigger mine to get worse, eating excessive sugar and tobacco. I have had to quit both of these. Diet helps too. No processed or "man made" foods. 75% raw fruits and veggies a day. Good supplementing helps as well. If you need a friend. Feel free to email me at
  4. caramani

    caramani New Member

    I work outside of Philadelphia and live in chester county. I also work with computers. I feel the same way, and have had about the same tests done.
  5. pam_d

    pam_d New Member

    So glad you are here! I have a sister in Havertown, PA---are you anywhere near there?

    Your story sounds SO familiar, except I have FM, not CFS, but have gone through almost all of the same tests as you. I, too, shy away from meds except I take Maxalt as needed for killer migraines. I've lately been seeing a CFS/FM allergist/immunologist---he's an MD who uses both traditional meds & natural approaches. He clued me into the fact that I have severe food allergies I never suspected I had; doing a strict diet, probiotics & digestive enzymes is helping some, plus other supplements for energy. One of the greatest things about this site is that you'll learn so much that helps you identify your underlying catalysts for FM/CFS. Plus there are great people to offer support when you most need it.

    I'm glad you are here, Renee!

    Welcome Hugs,
  6. judywhit

    judywhit New Member

    welcome to the board. This is a great bunch of people I feel blessed to have found this board also. This is a lonely DD but we are all friends here. From what I have learned on this board if I were you I would look into the abx treatment. Many of the folks that have been diagnosed with the ebstein barr virus are on the abx for the long haul. If you want to try the natural method many are having success with the olive leaf extract. I have not been test for the mycoplasmas but many here have. Read the articles in our library by Prof Garth L. Nicolson he is an advocate of the abx treatment. Also the website is helpful. I look forward to reading your post. Be blessed,
  7. bejo

    bejo New Member

    Welcome to our home away from home.You've certainly been through a lot of tests.About 5 years ago I had a flare like yours, where it gave a whole new meaning to the word tired.Please excuse the short reply tonight.My fibrofog is thick right now and it's hard to concentrate.But I wanted to welcome you and give you a welcoming ((((())))) bejo
  8. dolsgirl

    dolsgirl New Member

    Renee, you come to the right place. dolsgirl
  9. teawah

    teawah New Member

    Welcome and I just wanted to say that you are pretty lucky to have actually found docs that are really trying to help you. As you know from reading the posts, alot of the time we have alot of problems finding decent medical care.

    I am glad you are here and have found alot of good info from us.

    Keep comin' back
  10. Shirl

    Shirl New Member

    Hi Renee, man have you been around the block with the doctors and tests! You sound like awhole lot of memebers here.

    I also stay away from the meds, I don't have CFS, but do have Fibro, for 20 years now. Have quite a few of the symptoms you have, but the fatigue only last for a few days with me. The pain and the sleeplessness was the giant problems, which I have everything under control now except for the fatigue.

    I have been on this board for two years now, and have gotten more help here than all the doc's I have been too!

    I take one med only, low dose (0.25mg) of Xanax at 6pm only for racing brain syndrome. Then I take 2 ZMA and 1 3mg. Melatonin for sleep.

    I sleep now for the first time in my life from 7-8 hours a night, deep sleep. What a miracle that was for me!

    Glad you found our board, and I know you will be a vital part of it soon!

    Shalom, Shirl