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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Can't get my head around the exercise thing

Discussion in 'Lifestyle Management' started by jshu43, Jul 25, 2010.

  1. jshu43

    jshu43

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    I've had CFS for 16 years. Even after this length of time, I still am surprised and frustrated with my response to exercise. What I think is so strange is how when I do the exercise, it's actually enjoyable. I used to be a dancer, so it feels great to stretch and move around. But I will do 5 knee bends and 5 waist stretches and stop. I would never even think of doing anything aerobically. Even though I feel fine, it's thee next day that I really suffer. I am in bed, running a low grade fever and unable to even get up to feed myself. I had foot surgery, and I can not even do foot exercises without a bad relapse. I had a foot massage and pointed my foot 20 times each several ways and then for a week I couldn't get out of bed.

    Obviously, my conditioning is getting worse, so I really need to exercise. But it's like quick sand, if I struggle to exercise I sink quickly, if I just try to rest, I slowly sink into deconditioning.

    I still don't understand why PWC's can feel fine on the day of exertion, but a day later crash.
     
  2. taniaaust1

    taniaaust1 Senior Member

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    If that little exercise is affecting you that much.. i truely cant see how it could be benefiting you that much. My personal opinion that you'd be just better off focusing on the things you need to do about your house or whatever (the stuff you need to do to live well).

    Yeah the deconditioning sucks and DOES end up leading to injuries (that happened to me.. i deconditioned too much and ended up in hospital as I then injured due to it).. but is it really worth making your CFS worst and then not being able to do a thing (in which case then you are getting even less exercise). Just doing what normal daily life stuff you can do is exercise.

    best luck
     
  3. jshu43

    jshu43

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    Thanks for the advice. I go through periods I guess everyone goes through. I stop exercising because I know I just can't do anything. But then after awhile I just can't believe I can't do something. I know that I am sick, but it's hard when no one (outside boards like this and my doctor) gives much credence to CFS. I think maybe I just need conditioning, I just need some people around to stimulate me, I need the right diet, I just need to think positively, etc. I actually have accomplished quite a bit in many of these areas, but of course I'm still ill. It's hard to give up the desire to venture out in the world and participate!
     
  4. serenity

    serenity Senior Member

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    "It's hard to give up the desire to venture out in the world and participate!"
    yes, it is so hard. i thought i was over it & lately have been having another bad attack of desperately wanting to go out & do stuff.
    then of course, i pay.
    ugh
    i'm sorry to hear that so little physical activity causes you so many problems.
     
  5. Sasha

    Sasha Fine, thank you

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    I'm sorry you're having such trouble with this - it's a concept we all struggle with, that we feel fine when we're doing something and don't pay for it until the next day (by which time it's too late to stop, of course!).

    What finally made me face up to it was the recent study by the Drs Light, who have a graph about this so stunning that it made the front cover of the journal in which it was published. Take a look! It's in post #2 of this thread.

    This other thread started by Andrew links to a great video of a colleague of Dr Nancy Klimas making recommendations about PWC doing exercise that are based on an understanding of our illness and I thought very good.

    Have you thought about maybe not doing reps? Perhaps doing one of each of a selection of movements for different parts of the body, keeping that steady for a couple of weeks and then going up in very small increments, again keeping it steady after each increment to look out for delayed problems?

    I know how frustrating it is! Whatever level we're at, our inability to do even a little more is really trying.
     
  6. jshu43

    jshu43

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    Thanks Serenity and Sasha for your input. I really should get on the boards more. Very interesting study by Dr. Light - that does help. I think visual learning is the best way for me to understand things nowadays. I'm in a bit of a relapse right now, so of course it's all the more distressing during these times - so I appreciate the support!
     
  7. serenity

    serenity Senior Member

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    you're welcome! i wish i had more advice but i'm always here for support :)
     
  8. Misfit Toy

    Misfit Toy Senior Member

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    I am one of those that crashes 2 days after exercise. I don't get it. But, what's to get about this illness? No one really gets the whole ball of wax. There is more to it then even docs realize.
     
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Has your doctor given you help for energy? D ribose, CoQ10, carnetine and good supplements really helped me. I have had CFS for 18 years and did ok after finally getting a good doctor for it. THEN POTS came. WOW. I couldn't move. I was so weak it was scary. Too sick to see my CFS doctor in another city for a long time. Doctors I talked to here were clueless,k even though there are some great doctors, for regular problems.

    Finally I could travel and my husband took me to see my CFS doctor and she added more supplements and now I can do much more.
     
  10. jshu43

    jshu43

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    I am getting B12 shots and that may help a bit. I need to get some more CoQ10, because I did feel that helped. I'm taking a liquid multivitamin. I think I may have taken D Ribose but not sure about carnetine. I've spent so much money that I don't have on supplements that didn't do anything, that I kind of gave up. But I need to pay attention more and see what is really working out there.

    I have POTS as well. That's a double whammy! I have recently gotten a mechanical bed that raises up and I slowly raise it in the morning a little bit at a time. After about an hour I'm sitting upright and that kind of helps a bit. I am "lucky" in that I also have high blood pressure (fibrosis on my kidneys), so I just try to take enough blood pressure medicine to keep it from being too high, but I try to keep it a bit high, so I can stand up.
     
  11. jshu43

    jshu43

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    Yes, I don't get mad at people for not "getting" CFS, as I still have a hard time myself with it.

    I hate that you have crashes, but it is nice to know that I'm not an island. How much exercise are you able to do if any?
     
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Have you been tested for the B12 level? That vit is good for sure. I had many things to get balanced. It is usually not just one missing vitamin. Having a doc. to give you the best quality of supplements and also the right dose and schedule is important. Most people just try a bit of this and that and never figure out if something helps. The supplements I mentioned have been a miracle for me. I take a very strict schedule of supplements. You have to really work hard and find a good doctor and supplements. Sad that we can't go to most doctors, but most have no clue. Some however, are fantastic.

    I have POTS with high blood pressure. It goes up and down. Adrecor and Lipoic Acid have helped my POTS on two fronts, autonomic nerves and neurotransmitters and I am improving every day.
     
  13. jshu43

    jshu43

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    I haven't been tested for B12 levels. My doctor specializes in CFS & AIDS, but she never has mentioned testing for vitamin levels. (I always have low D, so we do test that) Is there certain things to be tested for? How do I go about finding what kind of regimen to get on? I think I have the premier CFS doc in town, so don't know where else to go.

    Very interesting about the Adrecor & Lipoic Acid. I will definitely look into that!
     
  14. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Well, everyone is different, but I have my supplements three times a day. I am on the Dzugan program. It has helped my overall health and hormones. He works with a doctor you see yourself. You do not see Dzugan. I update him on how I am doing and he and my doctor consults with him. I also see my doctor.

    Does your doctor know about supplements? You can ask about 120mg. of a good CoQ10, carnetine, Adrecor, alpha lipoic acid, and there are good things for the immune system. I take Maitake mushroom drops, C, E, zinc. I take a powdered calcium too. There are many things I take. We have had to keep adding because for me, there were many things to address. I had so many years of CFS and then POTS. Some people may have just a few things that need balancing.

    We are boosting my immune system, I tested low on Vit D so we added that, and a good powdered magnesium. Compounded hormones too. SAMe and 5HTP. My neurotransmitters needed boosting after being ill so long.

    I also eat the best diet I can and drink three liters of water a day. Good herbal teas and low sugar lemonde. I have kidney stones and lemonade is good for that as well as water. I have a Berkey water filter for really pure water. My "Job" every day is to read, research and then ask my doctor what else I can do. I eat and drink good things and REST. I am now able to do a few light exercises. I am trying to make my muscles a bit stronger to help the circulation and my nervous system. SITTING all day for so long is not good. I work hard to get better and I am doing well.


    Nuerotransmitters get low for many people, even those not ill. Stress, not enough sleep, diet. They effect the brain chemicals as well as the rest of the body.

    My POTS is being addressed with Alpha Lipoic Acid for the nerves that are affected with it and Adrecor for the Nuerotransmitters. You can just ask your doctor about these things.

    As I said. I have improved a lot, but people are different.
     
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  16. kat0465

    kat0465 Senior Member

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    HI jshu43,
    welcome to the board, you will find it helps a lot. theres a wealth of info on here.
    you mentioned your doc specializes in cfids and aids. do you see DR salvato in Houston?? just wondering, thats who i see, and it sounded like her.

    if you are, you can ask her to do some testing for vitamin deficiencies, she is great at doing whatever you ask.that is my next move, the vitamin tests and also i will be starting anti virals soon. Really scared about that as they are heavy duty drugs, but i feel like i have to try something.

    Enjoy the forum, you will learn a lot here:)

    Kat
     
  17. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I saw Salv. just once. I didn't feel comfortable with the place or information. We all do well with diff doctors and as long as they will do all of the best tests and you get better it is good. You have to feel comfortable with their knowledge for sure.

    You can't stop looking for the right doctors. They are all SO different.
     
  18. kat0465

    kat0465 Senior Member

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    sally,
    unfortunately even in a town as big as Houston, the cfids dr's are slim Pickins! at the moment, she's all i have.
    her staff is Awful! they never follow up on what thier supposed to do.

    and you have to do a lot of griping for anything to get done as far as what those nurses and staff are supposed to do. and her visits are getting shorter, Im guessing cause her patient load is probably thru the roof.

    if i could travel to see another dr i would. so i try to learn from this forum and others what works for people, then i go and ask her if i can try different things, it's Almost like im Taking care of myself. your right, you just have to keep on trying things and find a dr that your comfortable with.

    Kat
     
  19. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, the forum is wonderful for bringing up new supplements. There are so many wonderful ones to help.
     
  20. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Kat0465,

    "if you are, you can ask her to do some testing for vitamin deficiencies, she is great at doing whatever you ask.that is my next move, the vitamin tests and also i will be starting anti virals soon. Really scared about that as they are heavy duty drugs, but i feel like i have to try something."

    So what Company are you going to use to test your "Vitamins"? NutraEval?
     

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