Chronic Fatigue Syndrome...what do you know about exercise?

[Alenee]

My dear friend is suffering from CFS among other things. When I gave her a challenge to walk each day to the end of her driveway, she said she thought CFS patients shouldn't exercise. My gut says this cannot be correct. Otherwise, a CFS patient is doomed to atrophy and live out the rest of their days in pain, fatigue, and weakness. While I know this is part of the disease, the idea that one would be told not to exercise just flies in the face of all I've heard. Does anyone have info on this? Studies? Links? I work with her daily and want to see her build some strength. Thanks!

[scrapbookbuzz]

I was just reading about CFS today on WMD. It said those with CFS should engage in some mild form of exercise up to 30 minutes per day. BUT to be aware that it can temporarily exacerbate CFS's symptoms. It's kind of a dual-edged sword. Exercise is necessary but the after effects might be worse. I think as long as someone is mentally prepared for it, they can deal with it better than if it came as a complete surprise. On a similar note, but in regards to a different malady, I have a friend with fibromyalgia (which shares many of the same traits as CFS) who says a Gluten-Free diet has made a world of difference in her ability to function each day.

[PachiSusan]

I suffer from CFS but I am not viral and haven't been since about 2002. I have been told by my doctor to keep active by at least walking 15 minutes a day if I can. If I absolutely cannot - do what I can, which some days was walking to the mailbox and back only. It's very important to keep moving, even a little bit.

[Jean in Newcastle]

I have fibro. I have to exercise every day or I tighten up and am in more pain than before. I did not exercise for a number of years (because I listened to advice such as your friend had heard) and 4 years ago I deteriorated to the point of being a semi-invalid. I am now working hard with much pain to reverse the effects of that disastrous decision. Yes, I can (and often do) overdo it. My adrenals are weak and can get overwhelmed by any physical stress on my body.

[shanvan]

I have fibro. I have to exercise every day or I tighten up and am in more pain than before. I did not exercise for a number of years (because I listened to advice such as your friend had heard) and 4 years ago I deteriorated to the point of being a semi-invalid. I am now working hard with much pain to reverse the effects of that disastrous decision. Yes, I can (and often do) overdo it. My adrenals are weak and can get overwhelmed by any physical stress on my body.

 

 

I have fibro (with a heavy dose of the exhaustion usually associated with CFS) and a very similar experience to Jean's. I had to start exercise very gradually, which helped to keep the repercussions to a very low level. I began with walks around my own home, then yard, then around the block. I just kept building gradually. Now I aim for treadmill time daily with stretching immediately following. I feel much better when I'm consistent with exercise.

[Kim in Appalachia]

A friend of mine suffered this. I remember reading that Tai Chi was good for CFS (as well as RA). She should walk, even a little, every day. If her Dr is telling her otherwise she needs a new Dr, one who understands the condition better.

[raindrops]

I had Chronic Fatigue Syndrome from 1999 to 2004. I strongly encourage her to start with graduated exercise. I started with 10 minutes per day, carefully listening to my body to try not to overdo it. Over time, I increased the time I worked out. Today, I am completely better, swimming 1 hour 5-6 days per week.

[Kathryn]

Yes, exercise is very important, but overdoing it (which a walk to the mailbox could be) will make her worse. Only she knows how how is overdoing it. I wouldn't try to set a goal beyond doing a bit more each week.

[raindrops]

Yes, the first 6 months of my illness, I couldn't take a shower without overdoing it. Short walks were too much for me. But once I regained some energy, I tried to maintain that careful balance between getting more exercise, and not overdoing it. Sometimes I'd miscalculate, and curl up on the couch, miserable, with my heart beating out of my chest. But over time, things improved. I could exercise longer without overdoing it. Listening to your body is key. I remember reading an article years ago about the possibility that, in CFS, the virus attacks your heart. That made sense to me with my symptoms. I was physically active/ fit before getting CFS, but my heart would race or labor with any physical effort after getting CFS. My heart needed some physical therapy...but not until about 7 months after the onset of the illness.

[Alenee]

Many of you mentioned getting better. Would you care to share how? My friend is very sick and has gradually become worse over the last four years. Her docs think her bad teeth (three extractions and replacement of old crowns) are keeping her from responding to treatment so we're getting the work done but it's slow. Money is an issue and the trip to the holistic dentist is an hour one way; add the rest of the work and an hour back and she's a mess for a week afterwards.

[Alenee]

I did read some information from different sources last night, detailing the process of a CFS patient getting exercise. Not one said that a patient shouldn't try; it was as you ladies said, taking it slowly and gradually.

 

Dh also made a good point that she needs to start trying to get exercise so she can tell if she's getting any better after having started the dental work. As I said in my last post about the dental work, her docs think she should start getting better. If she doesn't at least try, how will she know unless there's a huge change in her brain function?

[TravelingChris]

I am fairly sure that dental work has been ruled out as a cause. Before she does something so expensive and potentially harming to her teeth, I would recommend that she look up scientific research on the subject on the web.

[Spryte]

I struggle with CFS (also among other things) and my doctors encourage exercise. Slow and gradual, listening to one's body all the while, but definitely exercise.

 

Like a PP said though, there are days that a shower can literally wear out someone with CFS. So the exercise has to be gradual.

 

BTW, I am much, much better now - and though CFS is still technically on my chart, and fatigue is one of my remaining symptoms, I rarely consider that I have CFS. What we found is that the root causes of the CFS are so important to address - and once we really started working on those... Huge difference. In fact, one of my docs (an Infectious Disease Specialist) mimes wadding paper and throwing it in a trashcan whenever he hears the words CFS as a final diagnosis. He insists there is always a reason (viral or otherwise). I sure hope your friend finds the cause of her CFS soon, and is able to address it in a way that will help her recovery.

[jeninok]

I have fibro, that is generally mild and not too troublesome, but if I don't keep diet, movement, and sleep in check it rears its ugly head. When I hurt I don't want to move, I want to do school flopped in the bed with DS, or sit on the couch and eat carbs.

 

I actually hurt right now, the fall down the stairs, and moving, and adjusting to cold hard tile floors is killing my back and hip. So this weekend I was lazy, and I flopped on the couch, watched TV and ate junk. Now my body feels like it has the flu aches and pains, I am constipated, and have a raging headache.

 

I am about to take a shower, then put DS at the bar to do some school work so I can at least stand in the kitchen across from him and do something. I know getting up and moving gently through it will help...but I don't wanna. Ballet or Pilates type stretches also help a lot, but have to start SLOW!

 

Swimming is the best exercise and pain relief I have found. I don't mean hard core swimming laps either, just being in the pool or lake and swimming.

 

Getting plenty of sunlight, Vitamin D, taking magnesium to relax the tight muscles, and making sure I sleep also make a huge difference.

[Jean in Newcastle]

I am fairly sure that dental work has been ruled out as a cause. Before she does something so expensive and potentially harming to her teeth, I would recommend that she look up scientific research on the subject on the web.

 

Chronic Fatigue Syndrome, like Fibromyalgia Syndrome, is a syndrome not a specifically recognized disease. A syndrome is a collection of symptoms. The problem is that a number of different things can cause debilitating fatigue. Eventually as they do research they will (and have) found certain causal agents that apply to many people with these syndromes. But not everyone who is diagnosed with these syndromes necessary have the same causal agent or even just one causal agent. Dental infection can be a cause of fatigue, just like any underlying infection can be the cause. (I've had dental infection ruled out as a cause for myself.)

[Alenee]

Chronic Fatigue Syndrome, like Fibromyalgia Syndrome, is a syndrome not a specifically recognized disease. A syndrome is a collection of symptoms. The problem is that a number of different things can cause debilitating fatigue. Eventually as they do research they will (and have) found certain causal agents that apply to many people with these syndromes. But not everyone who is diagnosed with these syndromes necessary have the same causal agent or even just one causal agent. Dental infection can be a cause of fatigue, just like any underlying infection can be the cause. (I've had dental infection ruled out as a cause for myself.)

 

Yes.

 

What I think I said was that her bad teeth are *preventing* her from responding to treatment. They are definitely one cause for her fatigue but not the total problem. She has some symptoms of dementia that are already getting slightly, slightly better since the first two extractions.

[Jean in Newcastle]

 

Yes.

 

What I think I said was that her bad teeth are *preventing* her from responding to treatment. They are definitely one cause for her fatigue but not the total problem. She has some symptoms of dementia that are already getting slightly, slightly better since the first two extractions.

 

If she is this bad and she does have infection, her body is going to be expending a lot of energy trying to fight that infection. Over extending herself can harm that process. But exercise does help your immune system and other systems to work right and not doing anything at all can be harmful too. I would do some searches on chair exercises.

[Sparkle]

Alenee, she might see if she could do the Sit and Be Fit workout videos. I have fibromyalgia and sometimes exercising increases my pain, but I can do the Sit and Be Fit exercises because they are really gentle movements and they help stretch your muscles at least. There are DVDs available and also there are some episodes on YouTube so she could try one first without having to buy anything. The instructor, Mary Ann Wilson, is very sweet and encouraging.

[Alenee]

Talked more extensively with my friend last night and she is up for trying to walk a little. Her CFS diagnosis was over 16 years ago and at that time, the general consensus was 'no exercise'. Because she's not currently being treated (until the dental work is taken care of) it hadn't come up in doctor's appointments. So, she's planning a little bitty walk today. Thanks for the help, ladies!

[SwallowTail]

I have fibro. I have to exercise every day or I tighten up and am in more pain than before. I did not exercise for a number of years (because I listened to advice such as your friend had heard) and 4 years ago I deteriorated to the point of being a semi-invalid. I am now working hard with much pain to reverse the effects of that disastrous decision. Yes, I can (and often do) overdo it. My adrenals are weak and can get overwhelmed by any physical stress on my body.

 

 

 

Same thing happened ot me - my muscles and tendons felt like they were turning to stone, and I was becoming mroe tired and having more pain. Now, a light schedule of activitiy keeps me pliable and reduces pain. If I try to step it up too much though, for more "fitness" or even weight loss levels, I get debilitating pain.

[PachiSusan]

 

 

Same thing happened ot me - my muscles and tendons felt like they were turning to stone, and I was becoming mroe tired and having more pain. Now, a light schedule of activitiy keeps me pliable and reduces pain. If I try to step it up too much though, for more "fitness" or even weight loss levels, I get debilitating pain.

 

 

I need to lose weight big time, but I do agree that my muscles were starting to tighten up so much without moving around.