CFS-High activity doesn't always increase symptoms. How about U?

Discussion in 'Fibromyalgia Main Forum' started by SoxFan, Sep 13, 2005.

  1. SoxFan

    SoxFan New Member


    For a long time I had been afraid of doing too much - even when I was feeling fairly well - for fear of relapse.

    A few weeks ago I started to add more activity and exercise when I'm having a "good" phase, with no ill effects. I have heard so many people with cfids say that if they do too much they pay for it the next day. For me, it seems that I have "good" and "bad" phases, and my activity level does not necessarily make me feel better or worse. It's as if this disease has an agenda of its own.

    Does cfids affect anyone else this way?
  2. LISALOO

    LISALOO New Member

    Usually I feel worse after doing anything. SOmetimes I think it's mental, before doing anything, I get it into my head that I'm going to get worse, so I start bracing. Over the weekend I did go out shopping for an hour and I didn't feel worse the next day. Instead I felt worse days later.

    Hopefully you're on the road to recovery if you can do stuff and not pay the next day.
  3. bioman85

    bioman85 New Member

    I am like you. I have chronic fatigue, and I have never gotten the post-exertional fatigue that is one of the hallmarks of CFS. The only time I've been markedly worse is when I moved to a new place, and I reacted to something having to do with the move, but after I run or do anything strenuous, I don't feel any different.

    chris
  4. bossco

    bossco New Member

    I am 10 years into cfs, I live in continuous payback. I am housebound due to the illness. I have had to learn to use my daily window of opportunity knowing payback will come. Its levels range from having to rest to going back to bed. I have learned to exercise mildly because the body wants to deteriorate from lack of, I do what I can around the house on the days that I know I can, some days, I do a lot of sitting. Its frustrating, never having a balance.
  5. tansy

    tansy New Member

    if I exceed my safe levels, but those levels change in cyclical way as does the timing, length, and severity of the pay back. Last week was iffy, today I coped with doing a lot more and hopefully won't have a delayed reaction.

    Soxfan these DDs do seem to their own agenda, that's what makes them so frustrating because we do not know from one day to the next how we will be. Even the weather affects us.

    Tansy

  6. ontariogirl

    ontariogirl New Member

    it's a sometimes, sometimes not guessing game.

    There are only 4 things that guarantee I'll be down and out--riding in a car for more than 20 min., info overload (like being in a mall), chemical sensitivities, and any repeated bending over like when I'm gardening.

    And of course stresses but even that is hit or miss.
  7. LittleBluestem

    LittleBluestem New Member

    No one ever said CFS patients should be couch potatoes. It is important to be as active as you safely can, so that you do not lose (any more) condition. The idea is to 'stay within the envelope' of you activity limits. Learning where the edge of the envelope is, is a matter of trial and error. I personally think it is good to ‘approach the edge of the envelope’ - to be as active as you can without going over the edge.

    How much is too much varies by person. I wonder if the envelop 'moves' for an individual person as well? You may instinctively do less during your "bad phases", thus ensuring that you stay within your more restrictive envelop at those times. I think by definition, if your activity level is not causing post-exertional exhaustion, then you are not being over-active (for you on that day).

    I definitely pay for overdoing. I overdid Labor Day week-end. I thought I was only overdoing in moderation and would recover in a day or two. It took me the entire next week to recover. Guess someone does not know the edges of her envelope very well!
    [This Message was Edited on 09/13/2005]
  8. happygranny

    happygranny Member

    Depends on what I do, and what kind of day I am having.

    If I am doing something that entails being on my feet for a long period of time, or something that is very stressful, I usually have a payback.

    However, my regular bike rides seems to lift my spirits, feed my soul, make me feel alive and almost 'normal' for the time I am riding.

    I only have payback after the bike ride if I over-do the length of time. I try to keep it under 45 mins.

    happygranny
  9. SoxFan

    SoxFan New Member

    I'm really interested in others whose symptoms are not as severe as others. Could you tell me about your symptoms? Also let me know how long you have been ill and how your illness started?

    If there is anyone else with a less severe case of cfids, would you please share your info? (Maybe I should start a new thread for this, but Chris's response caught my attention here.)
  10. bioman85

    bioman85 New Member

    My symptoms started last November. At the time I was going to the gym on a regular basis (cardio and strength). I woke up one morning with a very exhausted feeling, but at the time it cycled. Sometimes I was tired, and I would get more and more energy until I crashed again. Then, a couple of months after, the brain fog started, and my fatigue was pretty constant. However, I was still able to run about 40 minutes a couple of days a week. I never had a crash at all from the exercise. Recently, I have been getting mild pain mostly in my joints that has also been cycling. Throughout this time, I have been going to doctors who run test after test. The only diagnosis I have so far is idiopathic hypersomnia, which means I am abnormally tired during the day. Provigil was prescribed for me, but I have not seen any real benefit. Let me know if you have any other questions.

    chris
  11. SoxFan

    SoxFan New Member

    "idiopathic hypersomnia".....

    I kind of like that! It sounds a lot less trivial than "Chronic Fatigue Syndrome" to people who don't know what we're going through!

    Before this, I too worked out on a regular basis. As I said, I've been afraid to get back to any "real" workouts. I walk a max of 20 min, or do 5 to 15 minutes of light yoga on days when I "exercise".

    Chris, if I may, how old are you and do you work? At what percentage are you functioning compared to before your illness? Do you have a fever, swollen lymph glands, tender abdomen?

    Thanks,
    Susan
  12. bioman85

    bioman85 New Member

    I am 20 right now, 19 when it started, and am going to college. I have like a low-grade fever and pain when I swallow (seperate from sore throat). i also despise pretty boy center fielders with long hair.

    chris
  13. SoxFan

    SoxFan New Member


    That's my future ex-husband you're talking about!
  14. SoxFan

    SoxFan New Member

    The CDC in Atlanta doesn't list low grade fever as one of the main symptoms for CFIDS, but a lot of us seem to have one. Mine runs 99 to 99.6, but my "normal" temp was always less than 98.6.

    The good thing for you, Chris, is that I hear you are more likely to completely recover if you are younger when you contract it.
  15. bioman85

    bioman85 New Member

    I hope so, because I'm not gonna let this thing keep owning my life. As soon as my guai comes in the mail, I am going to start that protocol. I have heard that it also helps with chronic fatigue in some people, not only FM, but who knows?? I could be in the early stages of FM.

    chris
  16. Ridge-Runner

    Ridge-Runner New Member

    Althought I'm in the middle of my worst crash yet, the last four years have been a rollercoaster ride. I over do it because I feel better,then have to quit doing anything.

    I was able to return to college full time,but oddly only in the spring semester, both times I tried the fall semester I had to drop out,maybe because I had over worked myself in the summer. I did manage to get my AS in Liberal Arts this year before this latest crash.

    The brain-fog is nasty this time around.
    Keith
  17. SoxFan

    SoxFan New Member

    Keith,

    When you crash, is it immediately after doing more than you should? For example, do you do too much one day, then crash the next day? Or do you know you're doing too much for a few weeks, but do it anyway because you can handle it at the time and then crash for a few weeks?
  18. rileyearl

    rileyearl New Member

    Aren't you funny--future ex-husband. I wish I had been so wise!

    I'm 52 and have never exercised much. One time I took up aerobics and it just made me tired and hungry. Stuck with it for a few months. That was in my 30s and I had no idea I had fm or anything else.

    Now I mostly sleep after any exertion. I think that if you start exercising young and enjoy it, you will have a much easier time with fm. All those endorphins!

    When I was a teen and in my 20s, women didn't have muscles. The models and role models were wispy little things. How strange that I should get fm, which makes my practically non-existant muscles hurt.

    I love how strong young women are today. And it's great how in touch you are with what's going on with your body. I was always too busy to pay attention to that--even when I had some pain or ailment crying out for attention.

    If you can exercise without being punished afterward, by all means go for it! Best wishes!

    Francie
  19. Ridge-Runner

    Ridge-Runner New Member

    This year seems to be much worse, I feel the effects almost imediately,or within a day or so. Saturday I over worked myself, I knew at the time I was going to pay for it, but it was something that had to get done and I had my stepbrother helping,so I didn't want to stop half way through the project a have him come back to finish.

    I didn't feel too bad Sunday,but Monday and Tuesday were pretty bad.

    Several years ago I switched to seasonal work, hoping that by doing different types of work in the different seasons with usually a short break between, I would be able to keep working. I've grossed less and less each year for the last 6 out of 7 years. Had one good year in there. lol
    Keith