Newly Diagnosed, few questions

Discussion in 'Fibromyalgia Main Forum' started by hollandtx, Nov 10, 2006.

  1. hollandtx

    hollandtx New Member

    Hi All,
    I guess I have "joined the club" so to speak, and as I have read through many pages of your posts I have been quite impressed with your compassion and knowledge. I am strictly CFS, pretty much 19/20 of the symptoms! My question concerns getting better. I have heard it explained much like a type of remission condition, suchas in cancer or Lupus, a flare-up for a period of time, then you feel normal again. Is this how it works, or is my MD trying to break it to me gently?!
    Also, I realize everyone is different, but how long do the flares v. the good time last? Is your first period of illness indicative of the course of your long term illness (short first flare=short flares forever) I am/was? a triathlete, competitive runner, tennis, etc, very physically active and when my brain fog allows, I truly can't comprehend the change there will be in my life. I was diagnosed about 2 months ago, but have felt this way about 10-12 months, but like a stubborn idiot wrote it off to stress. Anyway, sorry for the long message, but I can already tell with the exception of my MD, my best friend and another girl I work with, most people I know are still in the "Yuppie Flu" mindset....yeah I'm just loving this great vacation from work:sleeping 16 or so hours a day and going to the grocery store feeling like one of the marathons I run. Thanks so much for your time and responses. I really appreciate them, and it looks like I will really appreciate this board.
  2. Mini4Me

    Mini4Me New Member

    I don't have CFS, but I just wanted to welcome you and let you know there are plenty of others here who do, and they are full of great advice.
    Mini
  3. Marta608

    Marta608 Member

    .... to the club nobody wants to join.

    In spite of that, we're a pretty good group. So glad you found us.

    You asked a hard question about flares because (and you'll get very tired of hearing this but it's true) everybody's different. Since you're so newly sick and were in good physical shape if you did triathalons, a remission is very likely for you. That is, as long as you keep sleeping!, stay as far as you can from stress, eat good-for-you foods, supplement your diet as needed including researching 5-HTP to see if it might be helpful, eliminate sugar and other white foods with no nutrients and consider juicing when you're able. You can find out a lot more by doing a search here on the board or better yet, use ProHealth's excellent library (one of the tabs at the top of the page).

    If I was back there where you are now instead of 12 years into this, I would make no assumptions. I would take this very seriously; it is not just another flu (I'm sure you're getting that idea....:>). I would find a way to take a sabbatical from work and life in general. I would toss every prepared food in my cupboard or refrig. except for a few frozen meals with no preservatives in the freezer for those worse times. If I smoked I wouldn't quit immediately because nicotine encourages the body to make serotonin, but I'd sure put it on my list. I would not drink alcohol, even if I could tolerate it which most of us with CFS can't.

    I'd eat as many raw foods (lean proteins, fruits and veggies) as I could. I would find a psychologist or psychiatrist who works in Behavior Modification and make an appointment for when I wasn't sleeping. When I wasn't seeing them or my doctor or sleeping, I'd be watching American's Funniest Home Videos or The Comedy Channel or reading light, funny fiction, anything to perk myself up and make feel-good chemicals in my brain.

    In other words, if I knew then what I know now. I'd have done the things then that I'm doing now. The difference is I might have stayed in remission.

    Hugs,
    Marta
  4. Jillian40

    Jillian40 New Member

    A whole bunch of us meet here when we need support, research, encouragement, ideas, medication or treatment recommendations, etc.

    I started hangin' out here about 4 years ago, when I was diagnosed with Fibromyalgia and now have the added dx of CFIDS.

    Depending on your money situation, I would say to first and foremost do as much research on the internet and by reading multiple doctor's protocols on this site as well as books. You can get recommendations here as well.

    Then hunt for a Doc and/or CNP (Nurse Practitioner) and anyone else who needs to be on your "team" to support you on your journey. I personally gave up on the Rheumotologists locally so flew up to Denver, CO where I am under the treatment of a Wholistic MD with the Fibro Fatigue CLinics. My appts are now held over the phone, lasting 50 minutes.

    I have taken antibiotics, Transfer Factor, Questran, antivirals, natural blood thinners (like Bromelain) as well as a good medicine to help with sleep and pain.

    I have improved quite a lot and am able to continue working as a Speech Therapist in the schools.

    I sure agree with someone above who posted that sleep and reduced stress is the best remidy in the meantime. And all the time really. I take about 2 days off a month to just lay in bed and get extra rest. I also sleep/relax both days on the weekend.

    Also become active in finding what you need to take to begin fighting your multiple infections. You can start by reading articles and books by doctors like Holtorf, Teitelbaum and others.

    Lastly, use the search feature at the top of the message board and type in key words for things you'd like to learn about and you'll get previous posts about your question.

    I wish you well on your journey.
    Use the strength you needed to run endurance races
    and apply it to your new path.

    Warm Hugs,
    Jillian
    Phoenix, AZ
  5. Catseye

    Catseye Member

    To save you a lot of time of looking stuff up, check out the complete protocols of Dr. Cheney and Dr. Titelbaum on cfs and what to do. Most of their stuff overlaps but Cheney tends to explain stuff a bit more. Don't dismiss anything as ridiculous or unlikely. Take all the supplements and focus should be on your liver even if your doctor says it's fine. Get rid of wheat and dairy and after a while you can try one at a time to see if you can tolerate them. It took me almost 4 years to find Cheney and Titelbaum's articles. So you've got a good head start! good luck, karen
    I'd like to mention that Titelbaum had cfs when he was in medical school and Cheney had a heart transplant and knows alot about supplements. They do talk about some drugs but I've used most of the supplements and they were enough to get me on the way back to normal.[This Message was Edited on 11/11/2006]
  6. quilp

    quilp New Member

    It is important to realise that this could be the hardest battle you have ever faced in your life. I used to play football three times a week, and a three mile run was nothing to me; that all changed.
    What is very important is that you don't try to push your yourself beyond your limits like you once did. Do this, and your battle against this illness will take you towards new depths of despair.
    The odds of a good recovery are in your favour.
    Best wishes, Mark