New to CFS, please help

Discussion in 'Fibromyalgia Main Forum' started by NEWSEDITOR44, Jul 11, 2006.

  1. NEWSEDITOR44

    NEWSEDITOR44 New Member

    Hi all - had my first encounter with CFS about 5 years ago, my first episode lasted about a month. I was weak, fatigued, hard to make it up a flight of stairs, lost weight becuase of my lack of appitite and bowel problems. It was horrible. About two months later bout number 2, much worse and lasted for about 8 weeks. I could hardly get out of bed it was so bad.

    Since then I have had reoccruing attacks, some lasting a few weeks, others lasting a few days. All come with faitgue, lightheadedness, difficulty concentrating, heavy eyelids (anyone ever get this one?), and sometimes a sore throat.

    So my questions are several:

    Does these symptoms sound fimilar to anyone?

    Is it normal to have the symptoms for only a few weeks/months at a time and then for them to dissappaear? I know the guildlines say for six months, but if its six months continuously, then what is it that I have?

    Do you know what your triggers are? it seems my symptoms show up out of absilutely no where and knock me on my arse. There is no ryhme or reason for any of it...

    Thanks in advance for all the responses. Hugs and prayers to you all!
  2. KMD90603

    KMD90603 New Member

    Welcome to the board! However, I'm sorry that it is under these conditions that we are meeting. Your symptoms could definitely be symptoms of CFS, but it's hard to tell.

    Have you had a thorough workup by your doctor? The problem with CFS is that before they can diagnose you they'll need to rule out alot of other illnesses which have the same symptoms. Including lupus, RA, lyme disease, thyroid disease, MS, other autoimmune diseases, etc. There are certain criteria which you must meet to be diagnosed. I don't think it has to be 6 consecutive months, but I can't remember.

    As far as triggers, they can be literally anything...physical and emotional. You'll find whenever you have some sort of viral/bacterial infection you may relapse. Also, stress is definitely a trigger. It varies from person to person. As you learn more about the disease and how it affects you, you'll become more aware of what your triggers are. You really get to know your body, as well as what's normal and what's not.

    Hope this helps. Welcome, again!

    Kim
  3. NEWSEDITOR44

    NEWSEDITOR44 New Member

    Thanks Kim!

    Whatever this is, I have had a long remision since the last attack (about a year or so, maybe longer). I thought I was rid of this whole thing. My latest attack started about a week ago, and seems to be subsiding now.

    I really hate this!!!!
  4. Roseblossom

    Roseblossom Member

    I hope you don't have it, but your symptoms of weakness, faintness, fatigue, brain fog, and sore throat are CFIDS/CFS/ME symptoms.

    But because they're similar to the symptoms that certain other illnesses present, I agree with Kim that it'd be good for you to see a doctor for the tests to find out if what you have is something else entirely.

    CFIDS flares do wax and wane, and the unpredictability of it is a challenge. But I've found that stress, mental or physical, brings it on.

    I can tell when I'm about to flare because of the intense weakness, faintness, sore throat, and achy tender neck lymph glands - then I have an overwhelming need to lie down and I fall asleep.

    Please let us know what you find out - and if you do have it you can be sure that we welcome you with understanding & friendship:)

    Best,

    Roseblossom
  5. NEWSEDITOR44

    NEWSEDITOR44 New Member

    Thanks for the insight Rose. The doc suspects that this is what is going on. he has pretty much ruled out Fib, MS, and Thyroid. Going to do testing for Lupus. But based on the history, and my immune system defeciancy, he thinks I a,m a prime candidate. I was also recently diagnosed as Bipolar, and I have read that there is a corolation between Bipoalr and CFS.

    I guess the thing that I was confused about was reading that you have to have symptoms present for longer than 6 months. Mine wax and wane all over the place with long spells of remission.

    Anyone else care to share?
  6. findmind

    findmind New Member

    If I were you, I'd begin an immune system boosting plan immediately...read Stormyskye and Mikie's postings for good beginner's advice.

    Do you live near a fibroandfatiguecenter? (FFC) Can search it here or google.

    Have you been tested for Lyme?
    By a Lyme specialist only! Google it, they have names by states.

    If you seem to have CFS and remissions, I'd say you are a good candidate for treatments, naturopathic especially, to kick it in the butt!

    There's always hope!
    findmind

  7. NEWSEDITOR44

    NEWSEDITOR44 New Member

  8. pepper

    pepper New Member

    The CFS specialist wouldn't see me until I had symptoms for 6 consecutive months.

    Although your symptoms certainly sound like CFS, many of us here have discovered that we also have infections such as Lyme disease and its coinfections. I have been trying everything out there for 13 yrs with little results.

    Finally treatment for Lyme and coinfections as well as treatment by a naturopath are giving me some positive results.

    The sooner you can find this out and treat it, the better off you will be. Since I have been sick for so long it will take years for me to get better.

    I pooh-poohed the infection idea for some time because I knew that I had CFS. But you can have both. Or perhaps CFS as a result of infection. I strongly urge you to find a good naturopath and a Lyme Literate doctor.

    Good luck.
    Pepper
  9. deliarose

    deliarose New Member

    Most docs won't call it CFS until you've had it 6 months. Before then, it probably falls into the category of "post-viral" fatigue syndrome.

    The best thing is to tackle it now while it's still in the early stages. You might be a candidate for immunoglobulin shots, which if I understand it correctly, are a way to turbo-charge your own immune system.

    Otherwise, lots of rest, and a good CFS doc may be able to tell you if you would benefit from a comprehensive antioxidant regime (in other word supplementsw) and/or anti-viral meds.

    Do not attempt to struggle through this. That, in my experience, is a recipe for disaster.


    cheers
    Delia
  10. mrdad

    mrdad New Member


    If you haven't already, I suggest you download CDC.gov to

    find an extensive overview of CFS. Also Medlineplus.gov

    Take Care,
    MRDAD