What would you do differently from the beginning?

Discussion in 'Fibromyalgia Main Forum' started by 5417girl, Apr 11, 2006.

  1. 5417girl

    5417girl New Member

    I read this board because it makes me feel normal. I see myself in so many of your stories and I am thankful for your honesty and candidness.

    Still no DX yet...but going on three months of normal bloodwork, normal CT's, normal EVERYTHING....but still with an afternoon fever, awful fatigue and headache. Doctors are at a loss, and I feel like I am on the verge of never being the same again.

    At any rate......My question is this: If you could go back to the beginning.....(hindsight is always 20/20).....when you first started becoming sick....what are the things you would do differently? What would you change? Where would you put your energy?

    Thanks for any advice!
  2. KateMac329

    KateMac329 New Member

    I would FORCE my doctors to listen to me! I am going through the same situation but all over again.

    A few years ago they did all the bloodwork and tests they could think about running only to look at me and shrug their shoulders and say they didn't know what to do.

    I went into a remission when I was pregnant with my son. Now that he is 9 weeks old I am flaring so bad and feel desperate for an answer.

    I went back to my doctor hoping to find an answer this time and NOTHING!

    The nurse called me this morning and told me my tests were all normal. I told her that something was wrong, I didn't feel good and she just repeated herself and said that everything was normal.

    Good luck with everything!


  3. jenn5

    jenn5 New Member

    I would learn to pace myself, which is so important with cfids. Don't overdo things, rest when you need it. As some people on this site know, cfids can get much worse if you push too hard for too long. Also, put a high priority on sleeping well, and like stormy said, eat well- cut out junk food and drink lots of water.

  4. Lolalee

    Lolalee New Member

    I would not have pushed myself. I would have accepted my illness and made it a priority to take care of myself, instead of pushing through a flare and acting like I could still do everything myself.

    Rest, rest, rest.
  5. PVLady

    PVLady New Member

    Hi, I know you are having tests but you could have a bladder infection????

    Good Question.......

    If I could go back (two years ago) I would have never took the drug MS Contin. I wish I had found the excellent pain specialist I have now. MS Contin made me very sick (my digestive system).

    I would have forced myself not to become sedentary no matter what. I was housebound and would be inside for weeks at a time. (This came on very gradually).

    I would not have stressed myself out so much with work.

    I would never have drank alcohol to relieve my pain. I don't drink at all (for over two years), but used to use alcohol for pain relief.

    I would not have allowed my weight to go up and eat a healthier diet.

    Before I came to this board, I knew no one else with fibro and no doctors would help me.

    After coming here, I became proactive to find help.

    [This Message was Edited on 04/11/2006]
  6. Tantallon

    Tantallon New Member

    I would have eaten better, slept more, not got as stressed out as I did and drunk less!

    That's the thing with hindsight - when it happens it's too late.

  7. kimfibro

    kimfibro New Member

    i would have had a better diet (which applies to any illness in hindsite) and kept a valuable pain journal faithfully.

  8. suzetal

    suzetal New Member

    to see a doctor..........I had pain here and there for a few yrs before my DH forced me to make a doctors appointment.................By that time I could barley walk.

    Maybe if I had gone at the onset I would not be so sick today.

  9. 5417girl

    5417girl New Member

    It is hard, though, to believe in yourself when the doctors (the so called experts) say nothing is wrong....You almost start believing it IS all in your head....

    I think that is the biggest thing for me right now...getting the courage to speak up and say to them: No I don't think everything is ok. I feel awful and something is wrong. Keep trying.

    It's almost like I am intimidated by them...or what they might think.....It has been soooooo helpful to read the post about ridiculous things doctors have said!!!! Oh my gosh!!! Just to know what other people's doctors say and do some of those things is oddly reassuring to me....Maybe I can learn to stand up to those "experts" after all!!!!

  10. ldbgcoleman

    ldbgcoleman New Member

    I would have dumped the Rhuematologist I was seeing for almost two years and moved on sooner!

    But I have gotten positives out of going thorugh this. Like knowing my husband really is the rock I thought he was and finding out how strong I can really be. Putting things into perspective ect... Lynn
  11. findmind

    findmind New Member

    I see you have fevers, headaches and terrible fatigue...

    I do not assume you have either FM or CFS; however, you did not say terrible pain, so I feel you may have CFS.

    Here are the things I would do differently, because surviving is the name of the game with these dds:

    1. Records, Records, Records!
    a.A daily symptom journal

    b.Copies of every drs notes (send ltrs to correct them if they state anything derogatory or incorrect.

    c. Copies of every lab test, x-ray, MRI reports, etc...everything!

    2. Records, Records, Records!
    a. If you work, make sure your immed. supervisor knows the problems you are having. Have private meetings and make sure all said is recorded, and you get a copy of anything written down within 72 hrs. of each meeting.

    b. If you have to miss work, always call in and say so...and ask them to make sure they write down what you are telling them and keep a copy for you to get when you get back to work.

    c. In your daily journal, document each missed work incident and make a note: "See report dated.....".

    d. Work or not work until they ask you to leave or you get fired. Have your supv. document your difficulties while AT work: fatigue, dizziness, pallor/faintness, cognitive problems, unable to follow directions/confusion, even if they sound BAD and you're proud, these will help you if you ever have to apply for disability!!

    3. Records, Records, Records

    If you end up filing for Soc Sec or Private Disability, get an accordian file and a 1-31 file: keep everything in order from day one...if there are dates by which you must return something (medical records, work records, etc., put in in your 1-31 file at the 2 WEEKs ahead of time: that way you will get it ready early and not miss the action date.

    The accordian file should hold any personal correspondence YOU send, and their replys (this may include your requests for records or other items from other parties.)

    THEN you need a file JUST for the disability...a big fat one!

    Ok, you get the idea???

    Now you're ready...go to work, work your butt off until fired for not being able to do the job and BE READY....

    Then take the best care of yourself!
    Look up Stormyskye by Username in the Search section here...build up your immune system and regulate your off-time at least. Look on this site for products that might help.

    My motto: Prepare for the worst, then do your best....that's all you can ask of yourself, especially when you're so sick.

    I agree with downsizing at soonest point when you feel you may be sick for awhile. Pay all bills while you're still working and get down to the basics...you can always gear up again when you recover.

    Best wishes to you while you sort thru all this...maybe print out replies so you can view them at less fatigued times, so not so overwhelming, ok?

  12. painandagony

    painandagony New Member

    I would eat as healthy and raw of a diet as possible. I would get the supplements that improve immune system function. I would get to a chiropractor (they always tell me the longer I've been sick with these infections, the harder and longer it is to get rid of them). Quit work if you can, you can always go back to it if/when you get healthy. Rest, be kind to yourself, and tell your doctors, chiropractors, homeopaths, whoever, every last symptom you have. You never know what connection they might figure out.

    Good luck, and GREAT question!!!
  13. slowdreamer

    slowdreamer New Member

    I would have just sat upon the beach and rested and waited.

    I would have given my nervous system a chance to put itself together rather than running around listening to experts who were just charging money to guess.

    I know now that most professionals find it hard to say
    "I don't know."

    Eventually through word of mouth I would have found the right people to help me manage my symptoms.
  14. srobins

    srobins New Member

    I would have:

    Taken better care of myself
    Eaten better
    Not worked as many hours
    Listened to my body when it was shutting down instead of continuing to push.
    Quit smoking long before I did.
    I could go on and on...

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