Newly Dignosed with CFIDS

Discussion in 'Fibromyalgia Main Forum' started by enivalorac, Dec 17, 2002.

  1. enivalorac

    enivalorac New Member

    Hello everyone. Holiday greetings from the UK !

    After a 6 year battle, I was finally diagnosed with CFIDS yesterday .. and it may be surprising that I am actually relieved at the diagnosis! You see, for many years I have been suffering from constant pain, blackouts, pain, exhaustion, pain, brain fog, etc etc etc and I have been told it was everything from hypochondria, anaemia, MS, complications from Neurofibromatosis, and had a scan for a possible brain tumour. I have even been told by my own doctor I was depressed and needed to 'get a life'. !!! (Needless to say I have now changed GP's)

    Looking back on my medical history I had Glandular Fever about 28 year ago (at the age of 14) and have never really returned to complete health since that date. True, for months at a time I would be almost normal (if there is such a thing) but then a viral infection would set me back and I would be almost bed ridden from the pain. I have had to bring up my two girls on my own, (one of whom is severly handicapped, but that is another story) and even somehow put myself through university to gain a degree in Web Design. (I am still wondering how I actually managed that one!)

    Now at least I have a name to this DD and that will make it easier to fight. Nothing s worse than trying to fight an invisibe enemy. I know there will be bad days when I am not so certain about actually winning or even surviving the day, but at the moment, (despite the pain) I am feeling quite optimistic about the future...... Only one problem ... how do you explain to other people exactly what CFIDS is??? I would be grateful for any suggestions ...

    All the best for now .. Carol Vine

    BTW .. I have had to proof read this posting several times to check for typos .. guess this is just another side effect of this DD !! !
  2. JP

    JP New Member

    and thanks for sharing some of your story. More will come along to help you with sharing with others. I tend not to share...don't need the stigma that is so intense in the US. Some know that I am on disability with my back (which is true).

    It is good to have a dx and to know what you are dealing with. I went to a specialist with fevers and a positive ANA, found by accident really. I have had severe pain since my teens...thought it was normal given my atheletic youth and injuries. My first appointment dx was FMS, which many believe is different than CFIDS. Given the jury is not in on proving these syndromes, I would say that I don't know the difference. They will still try to rule out MS and Lupus...for now, it tests out as Lupus...time will tell.

    You sound like quite a driver. Good for you for being able to raise your children, obtain and education and seek out the medical help that you need. This is no small thing...I hope you are quite proud of your efforts.

    BTW...I proof read a lot too...I have been trying to stop the proof and let them go...I did not proof this note....let's see how I do.

    Welcome Again! Jan
  3. karen2002

    karen2002 New Member

    Hi--and welcome to the board. Having a diagnosis does help---validate these disorders. It is a feeling of "finally someone believes me, when I tell them I am ill!" It leads to such hopelessness when we are being told its all in our heads, we are hypochondriacs, or depressed, as we know when they utter those words there is no treatment in sight.
    Finding a good Doctor who specializes in these disorders makes all the difference.

    I have Cfids and Fibro. The best explanation I think is left simple. I am not sure people aren't just asking to be polite, or are just moderately curious (they don't really want the details)
    With Cfids....I just say "its an immune disorder". If you mention chronic fatigue, you get the pat answer....
    "ohhh yeah, I am tired all the time, too!" lol
    With the Fibro---I just say its a disorder that results in me having alot of pain. Thats sufficient. Very few ask more.

    I proof read my posts almost always---part of these disorders....we suddenly forget how to spell, or use words out of context, etc.

    Best Wishes, and Nice meeting you! We're all in this together! And here to support eachother.
    Karen
  4. Shirl

    Shirl New Member

    To our world! Glad to have you join us. I have Fibro, not CFS, but they sure can be a 'pain' either way!

    Explaining to other people what you have is one of the biggest challenges we have.

    After twenty years of living with Fibro, I have no set answer for you.

    My children are adults, so I bought them each a book on Fibro, told them to read it, and then we would discuss it. They did, and that seemed to help the problem immensely, I read an entire book to my husband who though he had a little hercules for a wife for years!
    Now, they all have an understanding what I live with daily.

    They slip sometimes, but not as much as before. As for friends, those who don't understand, well I just showed them the door (so to speak!). I can do without stress in my life as it is our worst enemy anyway.

    Having a name for what our illness is, does help a great deal. I know it sure helped it me. All this pain and sleeplessness, IBS, sinus, headaches, the 'fog, and that awful fatigue at least made sense then.

    I am doing just great for almost two years now, the pain is down, the fatigue is less frequent, the 'fog' only shows its ugly head if I am over tired, or stressed, and I finally got the sleep problem totally under control, due to the greatest gentleman on this board,MEL!

    After a lifetime of not sleeping, this man comes along with a simple solution to my problem that no doctor in all these years could solve!

    Again, welcome to the board, and I do hope we hear from you often.

    By the way, how old are your girls? I have two son's, and my daughter is the baby of the family.

    Shalom, Shirl