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CFS or Fibromyalgia, and Exercise? You have got to be kidding!

1 - I can do better 2 - Jury's out 3 - Pretty darn good 4 - Splendiferous 5 - Awesometastic (by 25 people)   Your rating: 1 - I can do better 2 - Jury's out 3 - Pretty darn good 4 - Splendiferous 5 - Awesometastic

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When my youngest baby was born, I experienced a serious flare, and was in a wheelchair for a while. I couldn't walk more than about five feet due to fatigue and dizziness. As the baby got older, I was able to put the wheelchair away, but I wasn't well, and I was still following the "very gentle exercise" and the "if it hurts, don't do it" rules.  

Then everything changed. My older son started a karate class, and the very nice people there invited me to join him, at whatever level I could, even if it meant I sat down during class. (Which I did!)

We're told that exercise is recommended for Fibromyalgia and now for Chronic Fatigue Syndrome as well. Sometimes, it seemed to me that whoever came up with that idea must be completely crazy! It's not that simple! But I have finally come to believe it can be done.

Note: if you don't have Fibromyalgia or Chronic Fatigue Syndrome, but you're here because someone you care about is sick, please read this article for healthy people. (Opens in a new window.) It explains what the "chronic" life is like in a way that healthier people can understand.

August 2 update: Here's a picture of me at the end of a very difficult class. The Karate Snowball of Doom!

Whose brilliant idea was this torture, anyway? 

We've all heard the advice. News shows quote experts, relatives quote news shows: Exercise is a proven treatment for Fibromyalgia. The well-meaning love to tell us this, and sometimes add "Maybe if you'd get in shape, lose a little weight, you'd feel better."

But, in fact, there are no studies showing that chronically ill people are actually just fat and lazy. What they've shown is that movement is helpful in improving our quality of life.

We didn't cause this by being lazy. If we did, those helpful, skinny, healthy people (who also don't work out like maniacs) would be getting sick too. They don't know anything about doing painful stand-up-while-brushing-teeth exercises every day, nor have they ever even contemplated a challenge like putting on your socks and shoes in under five minutes.

If sheer grit were the cure, I think most of us would be pole vaulting by now. We've had to push ourselves every day just to function. Anyone who thinks we're lazy is just clueless.

Here is an article that can help you understand the studies. For Chronic Fatigue Syndrome (CFS) the Medical Journal of Australia has reviewed studies, and concluded, "... that graded physical exercise should become a cornerstone of the management approach for patients with CFS. When applied astutely, including via "pacing", it may not be realistic to anticipate cure, but it is realistic to expect that patients will feel better and will improve their functional capacity."

Studies regarding treatment of fibromyalgia like this one have been pretty consistently in favor of exercise as well.

Now the question is, how do you accomplish it, when you can't even figure out how to brush your teeth and your hair on the same day?

Have you tried Exercise? 

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Taking care of yourself 

Well, in all seriousness, you can't add exercise if you're already overwhelmed with the rest of life. But there are probably things you can do to make your life easier.

Let someone else wash your hair. Really!
Did you know you can go into a chain-salon and get your hair washed for about $3? How much extra energy would you have for things that can make your life better if you didn't have to lift your arms to do that?

Have your dinner delivered.
Is cooking taking all your energy? Order a pizza and spend that energy on yourself.

Get necessities online.
Running out of toilet paper? You don't have to use precious energy running to the store. Click and be done with it.

Amazon Price: $20.20 (as of 05/17/2008)

Not sure you're ready? 

Baby steps

Karate might be too much. But there are things you can do even if you can't get out of bed. Try these links:
Barely Exercises
Can you suck in your gut for a few minutes during the day? This is a list of very basic exercises you may be able to do when you're not ready for more.
Water Exercise
Sometimes, just getting into warm water gives you a chance to move around when you can't do that easily on land. Lots of communities have warm-water pools (around 91 degrees) where therapy exercises and open swim times are offered.

Strength for Wellness 

my mantra for exercise


I will find my power and use it.


I will walk strong.

When I cannot walk, I will stand.

When I cannot stand, I will sit.

When I cannot sit, I will lie down

until I can rise again.

Martial Arts for Health 

There are many ways to integrate the health benefits of martial arts training into your life.

The Eight Treasures: Energy Enhancement Exercises

Amazon Price: $17.95 (as of 05/17/2008)

Tai Chi for Staying Young: The Gentle Way to Health and Well-Being

Amazon Price: $10.88 (as of 05/17/2008)

How exercise works for people with Fibromyalgia 

Exercising with Fibromyalgia
This article is an excellent source of information if you're trying to figure out how to make exercise work for you. This very specific information about posture, body position, repititions and more has been very helpful to me.

Disclaimer 

I am not a doctor.

I am not a doctor. If something you see here interests or inspires you, print it out and take it in to your doctor's office and discuss it.

What you see read about here is my experience, and should not be interpreted as advice for anyone else. Seriously.

Use your own good judgement, and talk to your doctor.

Karate? Are you off your rocker? 

I still wasn't able to fold a basket of laundry, because of the pain and fatigue. I wasn't yet able to cook dinner for my family, either. But watching my son's class got to me; I wanted so much to do it that I followed along sitting down.

The instructors assured me that I would be welcome in class, that I should only do what I can do, and that it would be fine.

Instead, it turned out to be perfect.

Exercise and Yoga for People with Chronic Illness 

Is there really a gentle exercise that will make a difference? How much pain am I supposed to feel? And most importantly, How do I get up off the floor?

The Book of Exercise gave me the information I needed to make exercise choices that are right for me.

My blog chronicles my karate class experience 

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Persistence 

It's an ugly word. I know.

I know one person who uses a stationary bike for exercise. Here's what he told me: If what you can do is three minutes, then do the three minutes every single day. One day, you'll realize that you're still breathing when that three minutes is up, and you might go on to five.

The trick, he told me, is not to berate yourself, and not to say "I can't do 20 minutes on an exercise bike, so there's no point in trying."

I never did buy the exercise bike, but I think what he taught me has carried over into Karate.

Thermacare - I love these 

Heat patches that feel great.

These things are great for muscles that just won't let go. I wear the neck/arm size (shown to the left) on my shoulders or just below the back of my neck, right where the guy in the picture has it. It's amazing, but they really do stay warm for 8 hours or more.

The Thermacare website has a good page telling why heat helps. Doctors have told me to alternate heat and cold, but I figure if they don't know what Fibromyalgia is, or what causes it, or how to cure it, I'm going to do what feels better. And these heat patches feel way better on ice. Especially with certain kinds of pain. See what the company says about it, then you decide.

What they're made of

There's a soft "clothlike" cover, with one peel-n-stick side. (Depending on the style, you stick it to your skin or your clothes. It sticks just enough, but doesn't hurt to take off.) Inside, there are flat "bubbles" that contain a mixture of charcoal, iron, salt, and water.

How it works

When you open the package (each one is separate) the oxygen in the air causes it to warm up. After 30 minutes, it's at full temperature, and will stay there all day. Warmth, they say, increases blood flow, and decreases pain, so that you can let your muscles heal naturally. I don't know if that's the reason, but I do know that they take away some of my most irritating pains, including some that feel like nails on a chalkboard.

(I wonder if Jeff Foxworthy has ever made that joke? You know you have a chronic illness if the phrase "pain that feels like nails on a chalkboard" means something to you.)

Thermacare Air-Activated Neck to Arm Heatwraps, 6-Count Boxes (Pack of 2)

Pack of 12 (2 boxes of 6) Neck to Arm size heatwraps. (Like the one shown in the picture above.

Amazon Price: (as of 05/17/2008)

Pacing and Balance 

For me, mental training comes before physical. I have spent years trying to learn how to live with this body, this illness. When do I push myself past tears, and when should I rest? If I'm feeling good this week, can I commit to a long-term project, or will I be sick again in a few weeks? How much can I do without sentencing myself to a week or more in bed?

Similar questions come up now that I'm doing Karate three times per week. But now, I have a specific problem to solve, and I must solve it every day: How hard can I push and still make it through the whole class?

The Olympic Sprinter

I told my instructor one day that It's hard to know how hard to push, because I can do almost anything once — a solid kick, a strong punch, or even a push-up. How do I know what it means to "give my all" without hurting myself? Karate is a lot about pushing beyond discomfort, and making the extra effort.

His response taught me a lot. He said that if there were an olympic sprinter training with us, and he sprinted as fast as he could across the dojo, he would not be able to keep that up for an hour. There's a reason, he told me, that distance runners don't start out going as fast as a sprinter. The goal he gave me was to push as hard as I can and still make it through the whole class.

It's hard. It requires constant awareness and constant adjustment. Sometimes I push too hard, and have to stop and rest. But that's ok. I learn something when that happens.

Find the time and money for massage 

Massage is such a wonderful thing. If you haven't tried it, do. If you have, and you *know* it helps, then why are you putting it off? (Yeah, I've been putting it off too, but not any longer.)

I used to think that going deep was the only thing, and that it was a good hurt. But i went to visit friends, and Shanta-Marie, who is a massage therapist, tried a Thai technique on me.

She rolled her forearm from my neck to my shoulder, and I didn't feel anything I thought it wasn't doing anything at all. But after a few minutes, I didn't hurt anymore. It was amazing!

So now I'm all about Thai massage. :) Or at least rolling. I get my husband to do it, but he's better at it if he has something to use to roll on me. So we use these...

Body Secrets Massage Roller (Omni Massage Roller)

I like these because they don't have batteries or annoying vibration. It's just a roller that your sweetie can use to smooth out your muscles. For me, the biggest cuprits are muscles that go from the neck down the right side of the back, under stuff. I'm told they're called Levators.

Amazon Price: (as of 05/17/2008)

How I do it: Specifics 

1. I show up for every class, no matter how I feel.

If I can't participate fully, I can sit and do some of the motions. If I can't do that, I can watch and learn. What I cannot do is use fatigue or pain (or depression) as an excuse to stay home.

2. I break cadence, or skip repitions.

If the class is doing three sets of ten, I may do three sets of five, skipping every other one, or only one set, or even fewer.

3. I stand at attention, or sit.

If I feel a muscle burn that tells me to stop, I stay focused, stand at attention or sit (or take whatever posture relieves the problem) and watch the instructor or advanced students. I don't leave to get a drink, give up, or daydream.

4. I give myself time.

After class, I rest for a long time. Then I shower and get dressed, taking an unreasonably long time to do so, I'm sure. And then, I rest again before I leave!

On Karate days, I don't do much else. I take a long nap, or just go to bed when I get home. I don't beat myself up about needing extra rest. Instead, I rejoice at my newfound strength, both mental and physical.

In all, I spend about six hours getting myself dressed, to class, showered and dressed again, and napped.

Does it hurt? 

Yes, duh. :-)

If you have fibromyalgia, you know it hurts. If you have Chronic Fatigue Syndrome, you know that fatigue isn't just tiredness, it's I-can't-move exhaustion. Here are some of the trouble spots I've experienced.

Feet

I'm told I should wear "supportive" shoes; instead, we do this barefoot. My arches hurt!

To feel better, I move them, change positions, curl them up, etc. If we are all pointing our toes, I may stop and stretch my feet, then try again.

I am hoping they will get stronger. If not, I will begin wearing a brace of some kind.

— Update: I've begun taping my arches, and it's helping a lot. I'm following these taping directions, along with memories of how the podiatrist has done it in the past. (I used to wear custom arch-supports.)

Shoulders

The shoulders! Doing forward punches isn't a problem until your shoulder realizes it's held the arms out for too long, and then... OW! That's easy to fix, though. Lower your amrs. I do that a lot when everyone is doing punches. The instructors are very kind, and nod reassurance to me when they see me doing low punches when others are doing high punches.

Sweat

Even if I'm being careful, and even if everyone else is doing fine, I'm really sweating. The answer to this, though, is really simple. Water.

In our Karate class, we do not break for water because we are learning endurance. However, sometimes I do need water, and when I do, I get it. The instructors always encourage me to take care of my needs. Thank goodness.

Tell your story! 

(Or as much as you'd like to share)

If you like this lens, please scroll up and rate it by clicking a star!

Want to tell your story? Or make comments, give suggestions? I'd love to hear from you.

JacqueJoy

Angela, It helps to read about others who struggle with the same issues as I do daily. Thank you for this lens. And thank you very much for visiting and commenting on mine on watercolor!

Posted October 15, 2006

Jennie.Harris

Thank you so much for this lens. Not that I have this problem but... it inspired me still! I hope Karate helps you, Angela and I shall definitely be keeping you in my prayer. God Bless. =)

Posted September 11, 2006

oniyagi

You so rock Angela! Karate moms are the coolest in the entire world! Make sure to check out www.blackbeltmama.com . She has an awesome martial arts blog!

Posted September 03, 2006

genglo

This is a great lens! I have RA and experience many of the same symptoms as fibro. I find that I really enjoy Tai Chi. I'll be sure to add you to my lensroll.

Posted August 04, 2006

Excellent lens! My fibro isn't nearly as bad as yours, but I have advancing age and arthritis to add to it, so I'm very familiar with the daily struggle to keep going.

Posted August 02, 2006

 
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Doumo Arigatou Gozaimashita 

Thank you!

For Sensei Best, Sempai Reinholz, Sempai Karlick and all the great teachers at Best Martial Arts Institute in Eugene, Oregon. The support I've received there is amazing. It's a wonderful place, and I feel peace each time I enter the dojo. Domo Arigato Gozaimashita.

The Fine Print 

Remember the Disclaimer, above? I meant it. :)

Use your own good judgement, and talk to your doctor.

Thanks to Ely80 for the photograph of the mountain and lake.

©2006 Angela Harms
You have permission to print this for personal use. If you want to share it on the internet, please share the url only: http://www.squidoo.com/fibrocize.

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