help! everyone around me tells me work out harder

Discussion in 'Fibromyalgia Main Forum' started by aqua44marine, Sep 13, 2002.

  1. aqua44marine

    aqua44marine New Member

    hi-
    i am newly diagnosed with cfs/fib but have been sick for at least 11 months. I moved to Long Beach Ca. one month before that, so I never been able to make friends, due to my fatigue.I have been really depressed before, so believe me,uh oh wait do I believe me?????...I know the difference between being depressed and just getting on out there and throwing myself into an activity to feel better and get energy and this horrid fatigue.All of my doctors and my acquintances keep telling me I need to work out hjarder, every day, get out there, do more and everytime I fall for it and believe what they say I am so exhausted it last for days, my muscles are weak, my mind doesnt work at all, I can't remmeber any of the words I want to use, an exhaustion so dibilitating the sound of the Tv or even being alive is almost unbearable.But I can't stop feeling guilty that I not working out 2 hours a day,sometimes its not even 2 hrs. every 2 weeks. I miss my rollerblades and bike,etc, but I hate to get so sick for days afterwards. Is this familair to anyone out there?? aqua44marine@aol.com
  2. aqua44marine

    aqua44marine New Member

    hi-
    i am newly diagnosed with cfs/fib but have been sick for at least 11 months. I moved to Long Beach Ca. one month before that, so I never been able to make friends, due to my fatigue.I have been really depressed before, so believe me,uh oh wait do I believe me?????...I know the difference between being depressed and just getting on out there and throwing myself into an activity to feel better and get energy and this horrid fatigue.All of my doctors and my acquintances keep telling me I need to work out hjarder, every day, get out there, do more and everytime I fall for it and believe what they say I am so exhausted it last for days, my muscles are weak, my mind doesnt work at all, I can't remmeber any of the words I want to use, an exhaustion so dibilitating the sound of the Tv or even being alive is almost unbearable.But I can't stop feeling guilty that I not working out 2 hours a day,sometimes its not even 2 hrs. every 2 weeks. I miss my rollerblades and bike,etc, but I hate to get so sick for days afterwards. Is this familair to anyone out there?? aqua44marine@aol.com
  3. MicheleF

    MicheleF New Member

    My most humble opinion is fire your dr & find a new one...pronto. Go to the dr referral section on home page, read tips abt choosing a new dr, then go to co-cure.org link for list of cfids/fms drs in your area. If none, make a post that you're new & need a dr in Long Beach CA area.

    In the meantime, order the patient guide (1st message at the top of each page.)

    Print out from the home page or library, the symptoms of cfs/fms or from mayoclinic.com (under diseases-find each one separately) and use those for simple explanations of what it feels like to have one or both of these DDs & show them to the people you really care about. As far as the others go, if they're truly your friends, they won't push you.

    If you do have cfs and/or fms, exercise is important...but at a slower pace than what you were once used to. I don't know that I'd be shooting for 2 hrs at a pop,,,it sounds like you're def more athletic than me (hee!) & I started out 3-5 minutes 2 times a day, and worked my way up. Listen to your body...try for much smaller than usual time for you & see how you feel. Just don't overdo, or yes, you'll pay for it. Don't even think about how you used to do 2 hrs...concentrate on what you can do now.

    Learn all you can & start making a daily log of symptoms. There's hope, info & support at this site...Take care. Michele
  4. teach6

    teach6 New Member

    You are not the same person you used to be. You can no longer do long workouts. Even short ones can turn into too much. Give yourself permission to stop those workouts. Don't worry about explaining it to your "friends." If they understood how you are really feeling they wouldn't push so hard. They are probably well-meaning, but they just don't get it. Some may never understand.

    You can substitute things like stretching and very short walks. If you find you tolerate these increase them ever so slightly. Try not to increase more often than every two weeks or so. Sometimes you will have setbacks. Learn to recognize the signs and let up when they occur.

    Read all you can to learn about these syndromes so you will be able to help yourself improve your health. When you think you are up to it I can give you the website for a great selfhelp course on the internet that does not take a lot of work, but can pay off in understanding how you react to different things and ways to improve your health.

    Good luck to you.

    Barbara
  5. amymb74

    amymb74 New Member

    I moved to ME from CT when I got sick so I have barely any friends & my old friends from CT think I'm just bored & need to get out more - "Why don't you just hop in the car &
    come to CT for a visit - you'll feel better" - yeah, right.
    I don't know if you read this before but somebody posted it last month & I thought it was really good:


    I found this on a website and thought it was helpful to
    give out to family and friends....I hope it helps
    Julie


    A Letter To "Normals"

    Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about FMS/MSP and its effects, and of those that think they know, many are actually mis-informed.

    In the spirit of informing those who wish to understand......

    These are the things that I would like you to understand about me before you judge me....

    - Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

    -Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I’ve been sick for years. I cant be miserable all the time , in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say , "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes ,or an hour. And, just because I manage to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of disease you’re either paralyzed, or you can move. With this one it gets more confusing.

    -Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what FMS/MPS does to you.

    -Please understand that FMS/MPS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.

    -Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

    -Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it cant be put off of forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive.

    -If you want to suggest a cure to me, don't .It's not because I don't appreciate the thought, and it's not because I don’t want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped , all people with FMS/MPS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would know.

    -If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

    In may ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning.

    I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you .

    ...and, as much as it's possible, I need you to understand me.
  6. aqua44marine

    aqua44marine New Member

    I just spontaniously started to cry when I read the first ever message to me saying they believed me when I said I exhausted, too exhausted to live almost.
    I left my home a yr ago and moved to long beach ca to start anew and I told myself that I would "LIVE TO EXERCISE".
    That if I was all alone and scared about moving away from everyone and everythinng I knew, I would become a rolllerblade queen and ride my bike and swim and scuba dive and body surf and now it has gotten to the pooint where I believe I can do it and then I canonly do one or the other once a week or less. That is the most painful thing about this to me, I am 44 and wished I could have done all of these things sooner, but was excited to spend all of my time doing them in southern cal. I usually just drive to the beach to watch the sunset now instead of rollerblading etc. anyway t hanks, somethingn in me came to fruition by reading you and the others understanding words
  7. selma

    selma New Member

    Sorry, to hear how your feeling. We've probably all been told the same things. Don't beat yourself up emotionally!
    If Drs. don't know what to do yet, why listen to others.
    I'm sure you'll get lots of info on this site. Put "exercise" into the search at top of page, and feel better.

    Take good care of you. Love, Selma
  8. garyandkim

    garyandkim New Member

    There is a doctors listing on the home page here see if they have someone near you or post a topic about where you live and ask if anyone has a good doc there. My husband pushed and is now perminatly disabled. Oh, yes this is very familiar. Don't take it if you start to get tired stop and rest. Not when you are tired.

    Take care and Good Luck, Kim and Gary

    PS you may not want your e mail add left on Spammers you know.