Claudia Craig Marek, MA, is an FM patient, medical assistant to Paul St. Amand, MD, a specialist in FM patient counseling, and author of The First Year – Fibromyalgia. Claudia has counseled FM patients for some 20 years, and is co-author with Dr. St. Amand of What Your Doctor May Not Tell You About Fibromyalgia and other books.
Q: Briefly, Claudia, what is your history as a fibromyalgia patient? Was it a long time between onset and diagnosis, and how did you go about seeking out and receiving treatment once you were diagnosed?
Claudia Marek: I have had fibromyalgia (FMS) essentially all my life. I began with bladder symptoms before I started school, then progressed to IBS (Irritable Bowel Syndrome) in grade school, severe pelvic pain and headaches in high school, and more and more pains and fatigue: back, legs, arms, etc. Later I had exhausting fatigue, and the mental symptoms as well.
Clearly this was all before FMS officially existed. As a child I was taken from doctor to doctor and throughout my life given many tests and medications. As I wrote in my book, about age 35 I stopped going to doctors because all they had to suggest was exploratory surgery and antibiotics...one didn't appeal to me and one made me feel worse. I was eventually diagnosed around 1990, after my younger sister had been. I was no longer seeking out treatment, I was sick of treatment.
I knew I wasn't crazy and actually was lucky enough not to have met doctors who thought I was. But I also knew my case and symptoms baffled them and we were mutually frustrated. I had retreated from this frustration.
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Q: As a medical assistant for FM patients, what is the most valuable thing you have learned about FM patients, or about FM in general?
Claudia Marek: The dedication to my book sums this up best "You are braver than you believe, stronger than you seem and smarter than you think." Fibromyalgics show me every day how strong and brave and inspirational human beings can be. Too many have learned to doubt themselves, their senses, their instincts. I have learned that most of us are strong, incredible people though we may not see it in ourselves. Through this I have learned just how demoralizing FMS can be. I am lucky: a day never goes by that I am not touched, inspired, or grateful for my role in their lives.
Q: As a counselor, what is the biggest mistake you see FM patients make? How do you help them correct it?
Claudia Marek: The biggest mistake I see people make is uninformed choices. Partially I blame the industries that crank out miracle cures and infomercials. I find too many people unable to distinguish between advertising and science.
Partially I blame the part of each of us that wants the world to bring a solution to our door. There is no one thing that is going to help us all.
I work hard to help people learn to evaluate the plethora of information they receive, from spam to books and blurbs in newspapers, to things a friend told a neighbor of theirs might help. I understand that fibromyalgics are desperate to feel better. I say this with compassion and I have walked in their shoes.
I try to teach people to LOOK at the information and the source. I urge them to try one thing at a time. Also to be reasonable about expectations.
For fibromyalgics, getting better is hard work. And I try to inspire them to understand that it is worth it. That sounds silly, doesn't it? But so many fibromyalgics have been sick for so long that they are not sure it's even worth the trouble it will take to beat the disease.
They don't remember how wonderful life is without pain, without fatigue or depression or loneliness.
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Q: The excerpt that follows is from your chapters about exercise. Do you have any introductory comments you’d like to make? We know exercise can be a controversial issue for FM patients.
Claudia Marek: I'll just give you a truthful vignette.
When I was sick I was utterly convinced that telling patients to exercise was a well-orchestrated plot on the part of the medical profession. I firmly believed that doctors told patients to exercise because they knew they couldn't.
Then, in a month when they came back and complained they did not feel better the doc could take the high moral ground. "Well, did you exercise like I told you? No. Well, how on earth do you expect to feel better if you don't do what I say?"
But then I began reading medical journals to learn more about my illness. And a funny thing happened. Every study of exercise and FMS showed that it helped.
Go to Medline (http://www.ncbi.nlm.nih.gov/PubMed/) and enter the search keywords ‘Exercise and fibromyalgia.’ The results will give you study after study after study. Weight training, aerobic exercise, walking, you name it, it helps.
About the same time I became frightened of osteoporosis. So I started walking. No one hated the idea more than I did. And at first it did not make me feel physically better, only mentally proud of myself.
• Then, getting up and getting out was something I looked forward to.
• Then, I started accomplishing goals, and also simply not panicking when I had to park far away from a store. I knew I could walk that far.
It was a process. And I do know it helps, and on many levels. I know about the awful apathy of FMS, the inability to budge, to get up and turn off the TV. But I also know exercise is an integral part of the process of feeling better.
WEEK 4: EXERCISE CAN HEAL YOU
(Excerpted from Claudia Marek's book, The First Year - Fibromyalgia)
Yes, you’re tired. And yes, you ache. Undoubtedly, you won’t be able to tackle your gym’s new power spinning class or sign up for the local 10K run. But that doesn’t change the fact that exercise is essential to your well-being. More than any other thing that you can do for your fibromyalgia, exercise will help you lead a more normal life.
If you’ve ever wished for something you could do to change the face of your illness and its effects on your life – the answer lies here.
The Strong Case for Exercise
Exercise releases endorphins (the body’s natural painkillers), relieves stress, helps you maintain your weight, strengthens your muscles, protects your bones, and makes a healthier heart and lungs. Not only that, exercise will give you more energy and will also help you sleep better.
Back in 1904, Sir William Gowers prescribed “perspiration” (or exercise) for his patients because in his experience it worked better than painkillers, a fact that has been corroborated over the years by many studies.
The evidence is overwhelming that exercise will help you feel better. Yet most of us fight it tooth and nail. I know this because I did: tooth, nail, and with both hands and feet. I was dragged kicking and screaming to exercise, and I still don’t love it. But like many other fibromyalgics, I do it. I’m a believer – I know it does what it’s supposed to do.
Take Small, Positive Steps to Start
In the beginning, it’s not a good idea to set a certain amount of time as a goal. Thirty minutes can seem like thirty hours if you haven’t slept in two nights and your feet hurt. Checking your watch will really be discouraging.
So don’t start with thirty minutes. Start with a reasonable distance. Down to the corner and back, around the block, over to the park – whatever distance seems within your reach in the beginning. Something is better than nothing, and doing something enough times will teach you that you can do anything.
Remember to stretch your muscles before you start any sort of exercise, and be sure to respect your body when it signals a different kind of pain than you’re accustomed to experiencing.
For fibromyalgics (and most everyone else), the best exercise to begin with is probably walking. It’s a lot safer for your joints than running. Though a warm pool and water aerobics may seem more inviting, swimming should be done only in addition to a walking program unless you have something seriously wrong with your legs or back; that is, something other than fibromyalgia.
The reason I’m saying this is that weight-bearing exercise is important for women, especially during perimenopause or menopause and after.
Make Your Routine Easy
It is, however, important that you select a form of exercise that appeals to you. For most people it’s harder to get motivated if they have to get dressed and drive to the gym and avoid the times when it’s crowded with enthusiastic young people trying to impress each other. It’s too easy to postpone the trip and to make excuses.
That’s why walking around where you live is a good way to start. If you live in a climate where walking outdoors isn’t feasible year-round, you might consider investing in a low-intensity exercise videotape so you can work out inside your home.
You might also want to try a treadmill or an exercise bike. Before you purchase any equipment, rent it for a while and see if you like it. And because most people don’t take this advice, you can also find used equipment of every description in your local paper or on the Internet for very reasonable prices.
Consider How You Feel
If you decide to start with walking:
• You won’t need any special equipment,
• You won’t have to pay a fee,
• And you can just get up and get started without any preparation or fanfare.
• Each day you can tailor your distance to your physical abilities.
• You can do it alone if you feel like being alone,
• Or you can do it with a friend as a scheduled event.
The latter is an excellent idea for at least one or two days a week.
With fibromyalgia, pacing is always the key to every endeavor. Even though you can push yourself to do more, don’t do it.
Your goal should be, in the beginning, to walk at least every other day. This keeps your muscles from tightening up too much and will actually make exercise easier. (Remember that if you overdo it, muscle soreness will not appear until 24 hours following the activity, and peaks between two and three days later.) Fatigue, of course, will occur sooner.
A good workout will release enough endorphins to last 24 hours. This is why small walks more frequently is more beneficial for out-of-shape muscles.
If you find you’re too sore to walk when the scheduled day arrives, you’ll know that you did too much. But always start out, anyway. Fifty percent of the time you’ll feel better once you get started and can talk yourself into continuing. The other half of the time you’ll know it’s just too much and you can do a little less.
Sometimes if you feel achy, a warm shower before you head out can loosen you up, especially in cold weather. Be realistic, though, and understand that you will have setbacks and that you won’t progress in a straight line to feeling better. You will move forward, though, if you stick with it.
It’s Crucial to Warm Up Slowly
Before you start your exercise, you’ll want to do some gentle warm-up stretching. Fibromyalgic muscles are tight so they’re vulnerable to strains and sprains.
Warming up means starting at a slower than usual pace. This allows your body to switch from anaerobic to aerobic exercise comfortably and smoothly (more about that later). You don’t want to contend with muscle cramps. So for the first five minutes of your walk, go slowly.
If you’re swimming or riding a bicycle, the same applies.
Track Your Progress
Keep track on a little calendar or jot down on a sheet of paper how long you’ve walked each day.
• This way, you’ll be able to see when you’ve done too much and suffered for it the next day.
• You’ll also see how your workouts lengthen until you reach your goal.
Concentrate on building up the duration of your exercise before increasing the intensity. When you reach the point where you are exercising the optimum amount, it will be up to you to decide whether to do more or just keep it up. You could graduate to a low-impact aerobics class, for example.
Thirty minutes of moderate exercise a day will give you the benefits you need for your general health, but bear in mind that is the minimum amount of time.
Once you have established your exercise program, it gets easier to continue. Your body will reward you by producing endorphins, your muscles (including your heart) will get stronger, and you will feel better and more competent. Succeeding at something as difficult as exercise, especially when you’re tired and achy, will certainly improve your attitude.
Balancing Your Exercise Routine
There are two basic types of exercise, and eventually you’ll want to try to do both on a regular basis - although the regular basis for some things might be once a month.
Aerobic exercise is the activity we started with because it makes your cardiovascular system stronger. Your body requires extra oxygen for this kind of work, requiring your heart to beat faster and pump more blood around your body. The more you exercise, the more efficiently your body will learn to deliver this extra oxygen, and will strengthen your heart muscle.
This type of exercise is what builds stamina, which becomes very important when you need to function and you don’t feel well. Walking, running, and swimming are examples of aerobic exercise.
Anaerobic exercise is the short, intense type of activity that doesn’t require extra oxygen – there isn’t enough time to get it from your lungs to your muscles. Instead, it uses the small amount of fuels stored within the muscles. Weightlifting, push ups, sit ups, and short sprints are examples of anaerobic exercise.
This is the kind of exercise you might want to do later on, when you feel better, to build or tone muscles for a better appearance.
If you bear in mind the distinctions between the two types of exercise, you’ll understand why you need to warm up before you start a session.
• If you start too vigorously, you’ll be doing anaerobic exercise, and you’ll get tired very quickly.
• This is because it makes time for the increased oxygen you’re consuming to get to the muscles. It takes a few minutes for the body to switch into the aerobic mode, where sustained exercise is easily fueled by oxygen, and after twenty minutes, fat.
You may also want to work on improving your flexibility if your muscles get stiff. You should have a stretching routine for the times when your muscles tighten up.
• Some people do gentle stretching just before bed and in the morning after a hot shower. They find this makes them much more comfortable during the day.
• Another good time for gently stretching is after aerobic exercise, because your muscles are already warmed up.
Stretch Your Muscles Carefully
The more stretching you do, the more you’ll lengthen your muscles.
• You should aim to stretch at least four times a week.
• All stretching movement should be done very slowly to the point where you feel gentle tension. When you feel this tension you should start to work up to holding this position for 30 seconds.
• Do not bounce when you stretch because this will trigger your muscle to contract.
If you feel sharp pain, ease up a little, and stop the stretch that is hurting you if necessary.
You Must Take Charge of Your Exercise Program
The truth is you can do more to relieve your fibromyalgia than any doctor.
• Exercise is one modality that, if done correctly, will improve the quality of your life.
• Healthy exercise is not a high-maintenance endeavor; it is a process that you can tailor to suit your abilities, and meld into the time you have available.
• If you want to feel better, you have to do it.
Working with others in your support group or in special classes is a good way to feel solidarity and companionship on your journey with chronic illness. But the beauty is that you can do it any way you like. If you prefer to work alone, that too is an option.
In a Sentence: Exercise is one of the most important things you can do for your health when you have fibromyalgia.
This excerpt has been reproduced with kind permission from Claudia Marek’s book, The First Year, Fibromyalgia: An Essential Guide for the Newly Diagnosed. To purchase the book, click here. To read another excerpt - "An FM Patient Counselor's Primer on the Guaifenesin Protocol," click here.
Note: This information is general and should not take the place of your professional healthcare team's advice. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your healthcare team.