newbie - how long have you been sick?

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Aug 16, 2005.

  1. Shannonsparkles

    Shannonsparkles New Member

    Hi everyone. :) I've been sick with CFS for several years, but I'm only now able to do a little reading on it. (I'm also reading the Harry Potter series - really passes the time.)So far, I haven't seen anything very optimistic. Things like "50% of people get somewhat better after having this for years and years, and 50% of people don't get better after years and years." Is this how it is? How long have you been sick for?

    I started getting sick when I was 13, but it wasn't till I was 19 that I totally crashed and wasn't able to anything anymore. I'm 23 now. I've been doing the 'natural' sort of health care, and diet. I'm not doing as bad as I have been, but I still have to be inside the house all day every day, and there are many weeks that I can't get dressed or have a shower. Never knew my hair could get so oily. I mostly read now when I'm 'up'. Thank God I can do that much!

    What I've read so far says you either get better, or you don't. Nothing more helpful than that. Is this a disease where you have to just wait and hope for the best? Or are there things I can do to make a difference with how this turns out?

    Thanks everybody. Hug.
  2. ilovecats94

    ilovecats94 New Member

    Wish I could help you, but I have FMS. You can check people's profiles and may find more info that way too.

    I'm sorry to hear you have CFS and have been sick so long.

    I've had FMS for 10 years and I believe I had it years and year prior to that, just didn't know what the muscle pain was from them.

    There are days I don't get a bath either and unless I have to go somewhere, I only wash my oily hair every 4th day. I feel my major problem is fatigue more so than pain. Wait until winter hits, I'll be singing a different tune then. lol

    Hugs,
    Faye
  3. gang

    gang New Member

    i'm new in this site,chinese,now live in china,poor English,but my heart is warm.
    i got cfs in 1994 when age 25,didn't know 'cfs' at that time,untill 1997 read an article in English occationally.housebound till 1998,then i purswaded a medical college enrolled me into a continue education class(i'm not a medical student before),and i studied there for one year,swallowed many books and herbs,tasted any therapy which seemed helpful,finally energy came back gradually in these years. now married and my son just came to this world ,and i've just passed chinese college entrance exam this June and be enrolled by a medical college,will become a freshman in this Sep again .though age 36, i'm still feel young enough to persue a degree.

    best wishes.[This Message was Edited on 08/17/2005]
    [This Message was Edited on 08/17/2005]
  4. elsa

    elsa New Member



    Good for you !! I am glad you are feeling better and starting medical school in the fall.

    I really is about trying everyday and not letting your dreams go.


    Good luck to you!

    Elsa


  5. Shannonsparkles

    Shannonsparkles New Member

    Thanks for writing guys. I wish somebody had given it to me straight in the beginning.

    How do you have a life? How do you get taken care of?

    What if I don't get better?
  6. Jessa34

    Jessa34 New Member

    Your post sounds like I could have written it. It is frustrating to know that what you have isn't great, and that it's with you for your life. I wish I had known in my twenties what was wrong with me- I'm in my mid-thirties and have been feeling lousy for about 10 years. It feels like a lot of wasted time, and that is sooooo frustrating.

    The only thing I can say is try and stay positive and focused on what's good in your life. It's so easy to feel overwhelmed but feeling depressed doesn't help anything. Just remember that there are lots of others in the same boat - you're not alone. Knowing what is making you feel lousy is half the battle, and at least the diagnosis wasn't a fatal disease. I know that this probably won't help you feel better, but hang in there. It doesn't have to always feel so overwhelming.

    I've only been at this site a couple of months and have gotten a lot of useful info. It helps when having a bad day to come here. Good luck. :)
  7. gang

    gang New Member

    hi,everyone

    thank elsa for your kind post,which so encouraging me to go forward.and good luck to you too.

    followings are some of my experience recalled from that several-years-long nightmare,maybe helpful for shannon.

    1.know yourself:not mean spirit,i mean know your body,find a book on anatomy,make clear the positions of all organs,and how they work.
    2.listen to your body. God already made our bodies smart enough to tell us when they feel overused,so pls don't read or use computer overtime,take rest in time when feel tired,or digest trouble,or eyes burning.
    3. keep away with cold,cough,flu...most of us would be chemical sensitive when in such a low energy level,those tablets will make us weaker. how to do this--- i'll repeat:listen to your body,when feel cool--clothes;when sweat--take off wet clothes ;when thrill--no shower,compare with cfs,oily hair is nothing. washing hair easily induce cold or headache if you do it in the evening.
    4.abandon the faith on the bottle medicine,food will play more important role. pay attention to your appetite,digest and sleep,it's not simple,i also need some time to recall.
    5.about exercise:you said living in canada in another post,so i suggest skating when you feel good,it would make you happy,but save energy.
    .....
    best wishes.

  8. gang

    gang New Member

    hi,everyone

    thank elsa for your kind post,which so encouraging me to go forward.and good luck to you too.

    followings are some of my experience recalled from that several-years-long nightmare,maybe helpful for shannon.

    1.know yourself:not mean spirit,i mean know your body,find a book on anatomy,make clear the positions of all organs,and how they work.
    2.listen to your body. God already made our bodies smart enough to tell us when they feel overused,so pls don't read or use computer overtime,take rest in time when feel tired,or digest trouble,or eyes burning.
    3. keep away with cold,cough,flu...most of us would be chemical sensitive when in such a low energy level,those tablets will make us weaker. how to do this--- i'll repeat:listen to your body,when feel cool--clothes;when sweat--take off wet clothes ;when thrill--no shower,compare with cfs,oily hair is nothing. washing hair easily induce cold or headache if you do it in the evening.
    4.abandon the faith on the bottle medicine,food will play more important role. pay attention to your appetite,digest and sleep,it's not simple,i also need some time to recall.
    5.about exercise:you said living in canada in another post,so i suggest skating when you feel good,it would make you happy,but save energy.
    .....
    best wishes.