new here/ just diagnosed, where to start?

Discussion in 'Fibromyalgia Main Forum' started by ILM, Jan 26, 2007.

  1. ILM

    ILM New Member

    Hello! I am new here, I was just diganosed with CFS yesterday, although I have been diagnosed with generic "chronic fatigue" in the past.

    My symptoms first started after the birth of my first child almost 11 years ago.
    They became severe after the birth of my second child dueing which I had the onset of severe IBS, food allergies and endometriosis.

    From 2002 to 2006 I had a wonderful reprieve from most all of my symptoms while I was pregnant with and nursing my youngest 2 children.
    The fatigue crept back on after the baby weaned.

    Then last year we moved to a house that was apparently infested with mold.
    It got bad quick. I was sick everyday.

    We have moved now but I am still suffering with this bout and hoping it doesn't get any worse.

    I've been looking into treatment with antidepressants.
    I'm having some anxiety and PTSD issues anyways.

    Several years ago a dr put me on effexor and it made my brain almost race, it was like my brain had energy but my body still felt like I was trying to walk through Jello.

    Does anyone have any good advice, links, books?

    I am interested in the autoimmune aspect as I also have IBS and endo as do most women in my family. Other family members have lupus, rhemotoid and diabetes. Pretty much all the female autoimmune disorders are covered in my family.

    I have every single symtpom of CFS that is listed on the CDC's website.
    How do you cope?

    My dr has started me on Ambien. I can't get to sleep at night despite being exhausted and I wake up every hour or so all night long. But I was so tired last night that I fell asleep and forgot to take it, so I haven't started it yet.

  2. HurtsToMove

    HurtsToMove New Member

    Hi there! As a first step you may want to fill out your bio. It helps us to get to know you a little better.

    You'll get lots of great advice on this site. If you have concerns over a certain issue, just put it in the search box to find previous posts.

    For sleep, I had great luck with Xanax. 0.5mg was enough to give me a wonderful night's sleep. If the Ambien doesn't work, maybe you could ask for the Xanax, or Lunesta. It takes time to get the right meds, so just be patient and work with your doc.

    Good luck and welcome to the board!
  3. fungirl2100

    fungirl2100 New Member


    I just joined as well. I am sorry to hear about your issues & wish we could have met under different circumstances.

    I can say that I took Ambien & Ambien CR for awhile. I ended up backing off of it. I didn't like the way it made me feel the next morning. Groggy & it made me a differnt person.

    I hope that you will have better luck with it. I have come to find there are some nice people on here.

    If you like you can read my bio instead of me typing it out every time. You may want to writeup a short bio on yourself. It does help us get to know each other as well.

    much love your new friend,
  4. KMD90603

    KMD90603 New Member

    Although, I'm sorry we are meeting you under these conditions. CFIDS can be a very frustrating and misunderstood disease. There are many theories about what causes it, but I truly believe there is some type of autoimmune/immune component to it. Many people with CFIDS suffer from swollen glands, fevers, sore throats, muscle aches, etc. It sounds and feels like having the flu.

    I cannot imagine how difficult it must be raising three children, as I only have one at this point. However, even that can be difficult on days where I'm feeling sick.

    The most important bit of advice I can give you is to find a good doctor who believes in and treats CFIDS. It is often a difficult task, though, because many doctors are uninformed about how to handle us. However, do your research and be patient, because it takes time to find a treatment that works. Also, don't feel pressured to try every treatment you hear of. Sometimes there is something to be said about the "wait and see" method. Many times I enter a flare and just try to wait it out. The key to doing that is allowing yourself the rest that your body needs. I've been in a flare for two weeks now, and I'm just trying to listen to my body. However, it's hard when you've got family and other responsibilities to attend to.

    I hope this helps. Welcome to the board, hopefully others will be able to give you some good advice as well.

  5. ask2266

    ask2266 Member

    Read "From Fatigued to Fantastic" by Dr. Teitelbaum. That is my bible. I have been going to the Fibromyalgia and Fatigue Centers (they operate in a lot of different cities- in Atlanta, and they have been following his protocol. Some people don't like the centers, but they have been the only doctors that have been willing to try something other than antidepressants on me, and they take my condition seriously. (I've been on antidepressants since 2001 anyway) My CFS has definitely improved, particularly with cortef and florinef (for dizziness), diflucan (for irritable bowel yeast),t-3 thyroid hormone (for muscle aches) and famvir (for fatigue and virus issues). There are a ton of autoimmune conditions in my family too.... Sjogren's, Scleroderma, Crohn's, Endometriosis, Lupus... Good luck on the journey. This forum has really helped me cope.--ask

    P.S. I cannot sleep AT ALL. I take Lunesta, Klonopin and Ambien on a rotating basis for this, and sometimes they work well, other times not so much.[This Message was Edited on 01/26/2007]