ugh! been in a nasty cfs flare! due to exercise-

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Apr 22, 2010.

  1. bigmama2

    bigmama2 New Member

    i had been doing decently for a while- but i overdid it trying to do this neat outdoor sport called paddleboarding. (it's like a surfboard that you stand on and use a kayak type of paddle to move around thru the water. )

    i live in florida and i went out to paddleboard with my brother (who also has cfs). we had a fantastic time- paddled to this cool island- found lots of seashells, saw lots of sea critters. i felt like a kid again! saw the sunset that was amazing. but on the way back to the launch site i got stuck in a water current and had to paddle really hard and the adrenaline was going. well that did it.

    i have been in a nasty nasty flare for 6 days now. in bed most days. heart aches, fevers, feel so crappy i just want to crawl out of my skin, headache, bad bad fatigue. the fever stuff is the worst. i finally took some tylenol and it is helping- thank god- i was about to freak out from how horrible i felt. this is some nasty PEM (post exertional malaise).

    its so wierd how the exertion causes flares. and it specificallly feels like my immune system has gone nuts. (with the fevers and achy body). i wonder if my immune system is just fighting "nothing" or if one of my infections has actually been reactivated/triggered. (ebv, hhv6) ???

    fyi- the paddleboarding exercise has also put my brother into a bad cfs flare. (it always does.)

    many years ago before cfs hit - we were both into exercise and activities and it never made us sick after. just tired- the good kind of tired.

    guess we wont do that again anytime soon. it was such a wonderful few hours of life and fun, but i am not sure it was worth it.

    anyone have any similar stories to share? or medical info about this?

  2. kat0465

    kat0465 New Member

    i could write a book about pem! i hate it. Just when you have a little energy & don't feel like your going to die, you want to get out there & expierence life.
    then Wham, it knocks you on your Butt again:(
    usually it hits me from a few hours to almost 24 after i've over done it. a few years ago i was cleaning beach cabins for a living( if you can believe that, i did it 3 days a week! in the summer! climbing stairs!
    but after my 3 days were up the other 4 were spent in the bed. sick as a dog. i dont know how i did it, i guess cause i knew if i didnt i wouldnt have lights or water or food.

    Honestly, i think we all need to do something Normal every so often, even if we will pay dearly for a while.for what it's worth, it sounded wonderful:) i love the beach, and Miss it sooo!
    Hope your flare is over and your feeling better
    {{Hugs}} Kat
  3. Misfit101

    Misfit101 New Member

    I way overdid it a few days ago. I have a thread about it on the chit chat board I think. I had been feeling incredible and did some gardening. Im way past something as ambitious as paddleboarding thanks to my back problems but I have to say it sounds like incredible fun and right up my alley. Im so paying for it but I dont care--it was great to feel human again. It happens so rarely. Thanks for letting me live vicariously thru you even if it was in my imagination. I love the beach--I feel its magnetic pull calling me back. I live too far away tho. My DH wants to get me to South Padre Island this summer. Well see if it happens. Hope ur flare passes soon. Rebecca
  4. hollie9

    hollie9 New Member

    Just my experience, not real medical info...

    Doing a one time big energy expenditure would do about the same thing to me, but I have really benefitted by building up muscle over time with a trainer, I've done this a couple times now.

    First I started with a yoga trainer coming to my house 3 days a week. At first I would drag myself, red eyed, out of bed and go through the motions then relapse for a day, then get the next session, relapse, etc. After about 6 months I became very strong (built muscle) from this constant exercise. My CFS became much, much better, I think I was so strong it didn't take as much energy to do things with the additional muscle.

    Then I had a bunch of surgeries and lost my muscle tone.

    Now I am back building up again with Pilates. I relapse after each session, but already my abs are defined and hard as a rock. I will continue this until, hopefully, I again reach the stage where my CFS gets better from being really strong.

    To do paddle boarding I would have to gradually build up, with minor relapses, but eventually be able to do it, maybe. My body doesn't like cardio, only strength training, sounds like you did both.

    I was really into bike riding (bicycle) for at least a couple hours a day when I "caught" CFS. I didn't know I had it so I continued to bike as usual. It took me a long time before I realized it was making me sicker.

    Good luck, exercise can help.

  5. satchya

    satchya New Member

    I agree with Hollie's general idea. This is called "training effect." Your muscles don't necessarily even need to get bigger and stronger, but they "learn" how to work more effectively to produce the same result.

    I have Fibro and RA, and I am also a certified group fitness instructor. Just this morning I taught a cardio funk class at the gym. I also go through pretty bad PEM when I overdo it, but my lows now are at least "functional" lows compared to my lows a few years ago when I first started working out (which would leave me bed-bound.)

    That said, when I'm in an RA flare (as compared to a fibro flare), all bets are off, and I really am bed-bound. So you have to listen to your body and go at your own pace. But going through a cycle of pushing yourself, then feeling bad for a couple of days, then feeling better, then pushing yourself again, etc., is not necessarily a bad thing for us to do. Your highs will gradually get higher, and your lows will gradually get better so that even on your bad days, you can still function pretty well, although with pain.

    That's just my two cents, and worth every penny ;)
  6. Chelz

    Chelz New Member

    I am now resting because of exercise flare as well. So weird when I was reading your post because I have the almost the exact same "post exertional malaise" that you have. The fever part is the strangest for me. Exercise can put me in a "Low grade fever" feeling for days.

    I stopped exercising about 5 days ago and I am still not feeling good enough to do it again. I have been on the couch since Wednesday, and only have enough energy to go on this board, but NOTHING else. I have FM and fatigue is not usually a big factor for me most of the time, but when it hits, I feel like I can have the flu for weeks.

    I do commend you, paddleboarding is one thing I would pass up in a minute because I know that would flare me up to no end. I just ride a stationary bike, actually sitting down, and If I overdue that, even just a little bit, boom I'm down. I think it's great that you were able to do the paddleboarding, even for a short time :)

    Gald you had a good time, just think of that, yes it can be worth it because you have the memories of having a good time with your brother, which I think is worth it. Hugs to you, Chelz.
  7. sascha

    sascha Member

    helped me to read about others experiencing pem. it's a constant factor in my life and always always on my mind.

    i just spent a few hours on a beach with family two days ago, including small grandchildren. was scared about going--too many people, the sun, the wind, all the sensory input might be too much. well, of course it's too much. i DO know that about myself. but, while there, i enjoyed it SOOOO MUCH- like, oh- this is what normal people experience. then that night and next day uh-oh down i go for the count. have to sleep, rest, stay still. have all sorts of unpleasant symptoms. same old, same old...

    another time i got into dancing with my grandchildren and was having such a good time i completely forgot myself and danced myself into a bad two week stretch of sickness including a day at emergency room. came down with bronchial asthma; had to use inhalers. it was scary.

    what oh what do we do about this- there's an overwhelming need to live "normally" at times, to just kick back and enjoy ourselves. but then there's a price to pay.

    now i have art class this morning, which i love, but don't know if i can/should go. last week i went and signed in but could only stay15 minutes.

    this is very very hard on us. thanks everyone for sharing. i needed that reminder that i am not alone in this struggle. all my best to you- sascha
  8. hollie9

    hollie9 New Member

    It is always a balancing act. Sometimes it is so worth it to overdo and pay the price, and sometimes not.

    Building up with exercise at least you know there will someday be a pay off for the relapses, but I hate that last minute "should I stay or should I go" decision on other things. I wonder if by even asking that question it might mean I should stay?

  9. Doznclan3

    Doznclan3 New Member

    Just curious...did you used to have a message board going years ago? I remember a bigmama there...I really liked that board. Was that you? I still keep in touch with a couple of gals from there through e-mail.
    I used to live in I love the ocean. I miss it even though it's been years. I have gone to Ocean, just the other side of the country now. And, to Mexico to snorkel. Not sure I could do that now, although being in water seems to be an easier exercise for this poor ol body.
    I hope you are feeling better soon..that paddleboarding does sound hard!
    Take care, Cynthia
  10. bigmama2

    bigmama2 New Member

    for your posts. i am not alone w pem thats for sure. it has been a whole week and a half and just now i am feeling better. that was rough!!! a week and a half of sickness for a few hours of fun. was it worth it-- hard to say. feeling so sick for 11 days was starting to make me depressed. (as in clinical depression- not just bummed out). fortunately i am bouncing back.

    yes, i do want to do some gentle exercise (like walking) on a daily basis. instead of doing this too intensive exercise and being in a bad flare. cfs sucks!!!!!!!!!!!!!!!

    doznclan- no, that wasnt me running a message board. but i have been on here for a few years. yes the ocean/beach is wonderful!

    take care everyone- and dont overdo it!!!!!!!!!!!!!


    oh crappe- the fever is back. waaahhh. i thought i was over it. why do fevers get worse at night?[This Message was Edited on 04/27/2010]