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Old 07-30-2007, 09:53 AM   #1
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does it work?

For quite a few months I've been trying to deal with my cfs by graded excercise.Gently increasing how much I do.How come then some days I can walk a certain distance and other days it is out of the question or even harder than usual?Does this method work or not,because I'm losing the will to carry on with this....it takes so much self discipline to motivate myself,if there's no gain whats the point??

 
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Old 07-30-2007, 04:09 PM   #2
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Re: does it work?

Sorry to be a bit realistic (or negative here) but through my own experience it doesn't work!! As you've found out your body will let you know when you can do more and when you can't. You can't force it to do thinks if the chemistry for the muscles isn't working optimally. I think graded exercise may hve been brought in because it's seen successes in people with fatigue related to depression, where there isn't necessarily any biochemical issue (other than the depression) going on. Pacing is a much better way to use what little energy you have, although initially it may mean you having to restrict what you do to a lesser extent than you do now, not exactly progress I know, but I believe it's wise to listen to your body if it's saying stop I'm in agony, as opposed to pushing on no matter what (which some doctors might recommend as they've seen people with fatigue improve, probably those without M.E. but a different form of fatigue!?). In my experience if you're being active and it's hurting you've probably already done too much and are just compounding the problem day after day. Take a break for a bit then re try some minor exertion and very slowly (over weeks) build up the amount you can do without getting achy. Unfortunately some of this also relies on the body doing it's part to help, which is where things can get really complicated. Good Luck, all the best LT

 
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Old 07-31-2007, 12:00 AM   #3
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Re: does it work?

I'll second Tom's reply, but add that you need to be atuned to your body so closely that you recognize when you are going into a flare, if at all possible, before you get there...certainly afterward. DO NOT PUSH YOURSELF DURING A FLARE. You will only exacerbate your condition.

I was sent to a 20-day pain management program for a lower back injury that included exercises off and on all day long. This was just prior to the dx of ME. By the end of the 20-day period, I was completely exhausted and in so much pain I could barely cope. My doctor has me limit myself to gentle stretching to keep my back loose during a flare now that we know about the ME.

When I'm able, I walk and do other prescribed exercises to build my core. But I never push past what I can do comfortably. I always quit as soon as I feel any fatigue, even if I haven't done all I planned for that day. And I don't allow myself to feel guilty anymore if I'm too fatigued or in too much pain to do more than a couple of stretches. It took quite a while, but I learned how to pace myself so that I have more energy to expend over the course of the week rather than blowing it all in one day and needing a week to recouperate.

We have a couple of sayings where I come from: "Some days chickens; some days feathers." and "Some days you're the dog, some days you're the fire hydrant." Truer words were never spoken than in reference to ME and exercise. Have patience with yourself.

 
Old 07-31-2007, 04:48 AM   #4
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Re: does it work?

All good responses. I would only add that adrenal fatigue is now thought to be closely related to exercise intolerance. There are saliva tests that can tell you the state of your adrenals (better than blood tests). If your adrenals are stressed exercise is always going to be a problem. This has been my experience for the past 16 years. I'm learning that there are things to do to address adrenal fatigue, but we first need to know what is going on. Thyroid issues are closely related.

 
Old 07-31-2007, 03:30 PM   #5
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Re: does it work?

many thanks Tom66 and all others,that has at least confirmed what I was beginning to suspect.I think pacing seems to be the way to go with this.I just can't get my head around the some days i can do and other days i cant factor.and then of course once in a blue moon i have a really good day which is awful because it makes me realise what i should feel like all the time.....does that make sense??

 
Old 08-06-2007, 12:28 AM   #6
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Re: does it work?

ATTN:******HURTINGHOUSTON**** Just curious, what is ME???

 
Old 08-06-2007, 05:37 AM   #7
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Re: does it work?

M.E. (Myalgic Encephalomyelitis) is pretty much what the term for CFS (Chronic Fatigue Syndrome) and CFIDS is in the UK. I personally think Chronic Fatigue Immune Deficiency Syndrome is a more accurate term for most people. I think in the early days (?20yrs ago) a small number of patients with the weird symptoms that come with this illness were tested for abnormalities occuring in the brain and a number showed up on CT scans as having inflamed layers around the brain and spinal cord hence the descriptive name M.E.. I don't think this is the case for everyone with CFIDS/M.E. or explains some of the symptoms, but the name seems to have stuck in this country. They were considering changing it to Myalgic Encephalopathy which is a more general term for the dysfunction of the brain not relating to inflammation of it!! All potentially minor technicalities in what is a devastating multi system illness that should be taken more seriously in the UK.

 
Old 08-06-2007, 09:38 AM   #8
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Re: does it work?

I cannot speak for everyone, of course, but my experiences with graded exercise therapy was a complete and total disaster.

When I first came down with CFS initially, I was already in good shape from woking out with weights and running. One of the very first symptoms I experienced was this crushing fatigue and malaise during and after exercise. It would hit me so hard that it felt like I would pass out. Instead of improving over the years, this continued to get worse and worse and now only the slightest little exertions, things that normal people could breeze through, send me in a flare.

Last summer, I attempted to combat this by gradually building up my resistence to fatigue and malaise. I was EXTREMELY determined to beat this thing. So, I went out to my local track and began walking. At first, only a about an 1/8th of a mile, then gradually increasing this distance up to a full mile over the course of a month or so. I was very careful to watch my pace and heart rate as well.

Everything seemed to be going well for awhile until one day my brother decided he would walk with me. Well, we had naturally picked up the pace a little bit and I totally felt that I could handle it. We walked the mile and I felt pretty good. Lo and behold, within 2-3 hours, I started feeling REALLY sick...worse than any of the fatigue and malaise I had EVER felt from something like this in the past.

It took me a couple of weeks to recover from that and, not only had I lost all my gains, but I had lost ground with my illness. Things had gotten worse all around. I realized that I was causing damage to myself the WHOLE time and it finally came to head that day.

You know how you hear about CFS patients having a fear of making themselves worse if they exert themselves? NO DUHHH!!! Why do you think that is? Cause it DOES make you worse!

After this experience, I felt like a complete and total moron for completely going against my better instincts and trying this stupid therapy. I still regret it and I'm still suffering for it.

My advice is, if any part of you tells you this is a bad idea, LISTEN TO IT! You and only you know how you feel. If you know that exertion hurts you badly, don't fight it! Just accept it and learn to pace yourself. You cannot argue with the body...it's a losing battle 100% of the time.

Last edited by CFD 333; 08-06-2007 at 10:02 AM.

 
Old 08-06-2007, 09:53 AM   #9
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Re: does it work?

I agree with lamotta!

 
Old 08-13-2007, 05:07 AM   #10
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Re: does it work?

Quote:
Originally Posted by diddy_di View Post
many thanks Tom66 and all others,that has at least confirmed what I was beginning to suspect.I think pacing seems to be the way to go with this.I just can't get my head around the some days i can do and other days i cant factor.and then of course once in a blue moon i have a really good day which is awful because it makes me realise what i should feel like all the time.....does that make sense??
Sorry to confirm your suspicions!! but it does make sense to control the amount of activity that you undertake, although I have known some people take this to extremes, 7 minute alarm going off when talking on phone to one of them, signalling it's time to stop talking (thinking and talking still takes energy)). I wish there was an easy way out of this illness but there's nothing out there that I've come across yet that sorts EVERYTHING out just bits and pieces. (mind you some people have been misdiagnosed with M.E. when they have a chronic form of Lyme disease which can generally be successfully treated with long term antibiotics). Until something does turn up that will help everyone the most sensible thing to do is manage what little energy you do have so you don't blow it all in one go and then regret it a short while later. Inevitably this means you sometimes have to make some hard choices in planning what you will 'spending' your energy on in the hours, days and weeks ahead, not very spontaneous I know but if it gives you more stability instead of doing a 'crash and burn' followed by days/weeks in bed then it's got to be worth it? Wishing you all the best for the future.

 
Old 08-13-2007, 09:43 AM   #11
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Re: does it work?

Great discussion, you've gotten some good advice!

I also wonder about the CHOICE of exercise too. I find I do much better with yoga, I find it even helps me feel better. I can do pilates ok too. Basically it's mild muscle toning work and stretch. How much I can do depends on how I feel on the day too, but I'm not usually affected too badly by yoga & pilates after. But if I attempt any sort of cardio, including just mild short walking I am so much worse for it! It can put me off for days! So, I've pretty much given up on "cardio" type workouts, not even slow walking for which we had even bought a treadmill for, and just sticking to yoga/pilates. I figure it's good for the muscle conditioning anyway and maybe that's more important. (though I would like to lose weight, sigh).

How about you all? Do you find differences in how you feel in the type of exercise you do?

Thanks,
Sinead

 
Old 08-16-2007, 07:08 AM   #12
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Re: does it work?

thanks sinead22.I am a big fan of pilates as muscle tone concerns me aswell,although I still have to guage how much I can do,other wise i'm knocked back for the day.I do have another problem with it though....as soon as I do anything,pilates,walk or hoover for instance I break out in a sweat,which is both uncomfortable and makes it all the more harder.Then I wonder whether I'm doing too much or just to carry on,especially when I'm doing my pilates,I do tend to try and carry on because I enjoy it really.I know cfs can give you low grade fever,and it is definately not normal for me as I have raynauds which makes it difficult for me normally to keep warm!!!!I think my internal temperature control has just blown altogether.anybody else with this?

 
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