Wednesday February 10, 2010
Fibromyalgia and chronic fatigue syndrome haven't been high-interest conditions. Now that they're starting to get more attention in the popular media, some people have charged that they're "made up" by drug companies just wanting more people to take their drugs.
I'm not going to debate whether drug companies would like to be able to invent illnesses, but even in our system of a weak, underfunded FDA and a strong pharma industry with a lot of money at stake, it's just not possible for drug companies to "make up" diseases. Plus, these illnesses have histories that long precede drug-company interest or involvement.
A History Lesson
First, it helps to know that these conditions weren't always known by their current names. Fibromyalgia has been called several different things, including muscular rheumatism and fibrositis. This set of symptoms has been studied since the 1800s. The first drug approved for it was Lyrica, which got the FDA stamp of approval in 2007. Now I know drug trials take a long time, but I've yet to come across testing periods that last more than a century!
The first name for chronic fatigue syndrome was neurasthenia -- a term that was coined way back in 1869, for a condition that had been around long enough to be on the medical community's radar. It was 119 years later that the CDC first used "chronic fatigue syndrome" to describe the same set of symptoms. The pharmaceutical industry still hasn't succeeded in approving a single drug for this condition, after 140 years. If they'd invented it, wouldn't they make sure they had something to treat it?
The Drug-Testing Process
The way the system is set up, there's really no way a drug company could start touting a product for an illness it had created. To even get approval to start testing, they have to show data suggesting that the drug could help an illness that's already established in medical literature. While I'm definitely critical of many aspects of the FDA, there's just no way a drug company could go to them and say, "Hey, can we test this drug for chronic XYZ disorder?" and have the FDA respond, "Well, we've never heard of chronic XYZ disorder, but what the heck -- go ahead!" It just can't happen.
The Problem
The real problem here is that most people either know nothing about these illnesses or have gross misperceptions of them. Couple that with a growing distrust of big pharma and governmental drug regulations, and when people see an ad for Lyrica or Cymbalta for fibromyalgia, or a headline about Ampligen for chronic fatigue syndrome, they think: "I've never heard of that, it can't be real;" or "That just sounds made up;" or "I heard that was all in people's heads." They don't trust the messenger, so they don't trust the message. Our advocacy groups do what they can for awareness, but they don't have the money it would take to drum the reality of these illnesses into people's heads.
While there's no short-term solution to this problem, turning once again to history can help us see the probable resolution -- it wasn't that many decades ago that multiple sclerosis was considered a label for lazy malingerers or crazy hypochondriacs. Can you imagine someone saying that now? Slowly but steadily, fibromyalgia and chronic fatigue syndrome research is making progress, and someday scientists will find the smoking gun. The public will become more aware and more informed as information emerges, and eventually we will be validated.
Have you encountered someone who believes this myth? How has their belief effected you? What other myths would you like to see debunked? Leave your comments below!
Learn more or join the conversation!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
More Debunked Myths:
Photo © Jason Reed/Getty Images
Tuesday February 9, 2010
It's basic physiology -- when you feel sluggish, unmotivated and fatigued, getting up and doing some exercise causes changes in your body that boost your energy. Exercise also releases endorphins in the brain, and endorphins are great pain killers. So when people say those of us with fibromyalgia and chronic fatigue syndrome would feel better if we got "more exercise," there's something to it, right?
Actually, no. In normal, healthy people, yes -- exercise creates energy. Problem is, we're not normal and healthy.
Exercise is a tough subject, whether you have fibromyalgia or chronic fatigue syndrome. However, it's not the same for both groups, so let's look at them separately.
Fibromyalgia & 'More Exercise'
This myth is compounded by numerous studies showing that exercise lowers our pain levels and does in fact give us more energy. Doctors glance at the titles of these studies and tell the next fibromite who walks through the door to go to the gym. What they're missing is that the amount and type of exercise we need is far from what most people would even consider exercise.
If we exert ourselves to the point of exhaustion, we're probably going to trigger a major flare that lands us on the couch for days or even weeks. We all have different fitness levels so the exact amount of exertion we can handle varies greatly, but generally speaking, we should exert moderate effort for just a few minutes on a regular basis. There's ample clinical and anecdotal evidence to support that regular exercise, done with extreme moderation, helps us. That means, for us, an exercise regimen might consist of 2 minutes of gentle yoga per day. If you're in better shape, maybe you can handle a 10-minute walk or 20 minutes of aquatic exercise to start with.
I consider myself in moderately good shape for someone with fibromyalgia -- I can go grocery shopping, clean the kitchen and do a couple loads of laundry in the same day (most of the time, anyway.) I can also get through a 30-minute yoga routine without wiping myself out or having nasty repercussions. I couldn't do that a year ago, though, and if I'd tried, I would have crashed afterward. Two years ago, I would have crashed 10 minutes in; and three years ago, just getting into the first pose would have done me in on bad days. While I'm not the most consistent about exercise, I have worked hard to slowly and steadily increase my activity level.
That slow, steady pace is what we need. If all you can do is 2 minutes, try to be consistent about your 2 minutes. Eventually, you'll be able to handle 4. The key is not pushing yourself too far too fast, and expecting setbacks along the way.
Chronic Fatigue Syndrome & 'More Exercise'
A key symptom of chronic fatigue syndrome is post-exertional malaise. It's a period of intense, often debilitating symptoms that follows any kind of exercise or exertion and lasts for a day or more (usually more.) Research actually shows abnormalities in the blood chemistry of people with chronic fatigue syndrome after they exercise, and those abnormalities could very well provide the long-awaited diagnostic test for this condition. Some preliminary research also shows abnormal heart rhythms during exercise, which could mean that exercise is actually damaging your health.
For years, some so-called chronic fatigue syndrome experts have touted a treatment called graded exercise therapy (GET). It's controversial to say the least, and while some studies have shown that it can help some people, the methods used to arrive at that conclusion are frequently called into question. Looking over the available research, it seems to me that GET is only recommended because it's more effective than most treatments that have been studied -- and that's not saying a lot. This is just my personal opinion, but I think the people who are helped by GET fall into one of two groups -- those with mild illness and those with misdiagnoses.
So does all that mean people with chronic fatigue syndrome shouldn't exercise at all? It really depends. There's clearly a reduced exercise tolerance, but you're the only one who can determine exactly what your body can tolerate. It all depends on your current fitness level and severity of your illness. We all know that being sedentary increases muscle aches and pains, so at the very least you might want to learn some simple stretches you can do while laying in bed. Because of the evidence suggesting heart abnormalities, you should talk to your doctor about testing your heart to make sure exercise is OK -- here's a link to studies you can show your doctor, and they contain testing information: Cardiac Involvement in Chronic Fatigue Syndrome.
What If You Have Both?
If you're diagnosed with both fibromyalgia and chronic fatigue syndrome, you're in a particularly difficult situation -- the right kind of exercise may relieve some symptoms while exacerbating others. Again, you're the only one who can figure out the right level of exertion for yourself.
The Persistent Myth
The exercise myth is one that's not likely to go away -- it's pretty firmly entrenched in the medical establishment, and a consequence of an uninformed public. What we need to do is know our own bodies, try to educate those who are receptive, and ignore those who aren't. We're not doing any good for anyone by over exerting ourselves and winding up in bed for a week.
How has the exercise myth impacted you? Are there people in your life who just won't let it go? How do you deal with them? Leave your comments below!
Learn more or join the conversation!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © Michael Greenberg/Getty Images
Monday February 8, 2010
I hate asking for help. I've always thought of myself as a strong, independent person, and asking for help with things I think I "should" be able to handle is like admitting weakness. But you know what? I need to get over it.
The reality is, I have fibromyalgia. I'm not sick because I'm weak, but I have to accept that I have certain weaknesses because I'm sick. That means sometimes I have to ask for help.
Even though I've regained a lot of my functionality, I can't do everything myself. It's hard enough to raise 2 children, cook meals, clean a 4-bed/3-bath house, and maintain a third of an acre while working from home when you're healthy! My husband and I share the housework, and I try to carry my share. I have to admit, though, that I can't get through a week without him having to pick up some jobs that are typically mine. If he doesn't do a load of dishes or fold some laundry on a fairly regular basis, I get behind and can't catch up.
At times when my health has been especially bad, we've had to ask for outside help. Because of either distance or jobs, most of our family members can't jump in at a moment's notice, so we end up relying on his nearly 80-year-old grandmother -- who maintains her own house and yard and can run circles around me on my best days. We've depended on her to get our son to school when I can't drive, watch our daughter on days I can't take care of her, stay with the kids while we go to the emergency room, etc.
I feel a lot of guilt over asking for this help, and my guilt keeps me from asking for more help, from more people. It's a tough thing to deal with, especially when it's a battle to maintain a positive self image while regularly saying, "I can't."
Feelings like this are all part of accepting our illness -- which is not the same as giving in to it. My acceptance level is fairly high, but I do still have some issues (like guilt) to work through. I know that the more I accept my illness and limitations, the more I can work to overcome them instead of battling against them. I know that acceptance can help me recover. I really do try not to feel guilty, but I'm just not there yet.
Now and then, I go back and re-read this article on reaching acceptance and why it's important for us:
It helps me clarify things in my mind and re-focus my efforts where they really matter -- nothing is served by wasting energy on guilt over things I can't control. I hope it will help you, too.
Have you struggled with guilt over asking for help and relying on others? What has been hardest for you? What has helped? Share your experience by leaving a comment below!
Learn more or join the conversation!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © SW Productions/Getty Images
Saturday February 6, 2010
One of the few consistencies of fibromyalgia and chronic fatigue syndrome is inconsistency. We never know from day to day how we're going to feel, and that means planning can be difficult or impossible.
A recent comment here put it perfectly. Lisa B wrote:
"I live in a world of Maybes.
Maybe I can go to your party.
Maybe I can do this photoshoot.
Maybe I will get well one day.
Maybe I can clean my house today."
-Lisa B
The "maybes" make it hard for us to maintain a job, a social life, relationships, you name it. Even scheduling something simple like a parent-teacher conference can be stressful -- will I be able to make it? Will I be able to present myself well? Will I be able to have an intelligent conversation and remember what was said? Same goes for doctor's appointments, parties, family functions, lunch with a friend, etc. I have all the sympathy in the world for those of you who have to go on job interviews or make presentations to clients -- even thinking about it makes me a little panicky.
What I've had to do, first, is accept that sometimes I will need to cancel plans. The alternative is not making them at all, which means I'm giving up on a lot of things I want to be part of my life. Sometimes I feel like a flake, and other people might think that I am, but the times that I can make it are worth that risk.
Second, I try to be as open about my health problems as possible. If people know I have limitations, they won't expect as much from me and they'll understand when I say I just can't do something. And quite frankly, if they're not willing to cut me that slack, they're not worth my time anyway.
Third, I definitely agree with a recent commenter who wrote:
"I learn to gravitate toward those that have health problems like myself." -Kristi
I have a good friend with a severe form of arthritis. We both understand that plans are always contingent on how we're feeling, and we spend a lot of time just sitting around talking (frequently with ice packs, heating pads, etc. on both of us!) It really does help to have at least one other person in your life who has physical limitations. If you don't have someone like that, try local support groups or (if you're up to it) an arthritis/fibromyalgia aquatic exercise class. If those options aren't possible, try connecting with people online, like in a forum -- you can form strong relationships without having to get dressed or leave the house.
What has helped you deal with the "maybes" inflicted by your health? What have your challenges been? How have you tackled them? Leave a comment below!
Learn more or join the conversation!
NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK
Photo © Tom Fullum/Getty Images
