Tuesday, May 12, 2009


Do you know someone who has this?

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.

Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.

Fibromyalgia myths: The truth about 9 common myths

Get the facts about these nine common fibromyalgia myths. Learning all you can about fibromyalgia is the first step toward gaining control of your symptoms.

By Mayo Clinic staff

Fibromyalgia is a widely misunderstood condition that causes widespread pain and fatigue. If you've been diagnosed with fibromyalgia and are trying to learn all you can about the condition, you may come across some of the many common myths and misconceptions about fibromyalgia. Don't let these myths confuse you or discourage you from seeking help for your fibromyalgia symptoms. Here's a look at nine common myths about fibromyalgia and why each is wrong.

Myth: Most doctors don't believe fibromyalgia is a real condition.

Truth: This myth may come from a misunderstanding. Since fibromyalgia is defined by a list of symptoms, claiming that fibromyalgia isn't real is essentially saying that your symptoms aren't real. That doesn't make sense. Most doctors believe your symptoms are real.

The controversy comes when deciding whether fibromyalgia is a disease process that can be reversed or cured. Most doctors believe fibromyalgia is a set of symptoms that aren't caused by an underlying disease. Most doctors believe that fibromyalgia symptoms can be managed, but there is no underlying disease to "cure."

In some cases, a doctor may not be familiar with fibromyalgia. He or she can refer you to someone who knows more about the condition.

Finding a compassionate doctor can be a frustrating part of living with fibromyalgia. But don't give up if you haven't found the perfect doctor. Focus on finding a doctor who is willing to listen to you and take you seriously.

Finding a doctor who's an expert on fibromyalgia may not be practical, for instance, if there aren't many specialists in your area. But a doctor who's willing to learn more about fibromyalgia and listen to your concerns can be an invaluable ally.

Myth: Fibromyalgia damages your joints.

Truth: Though fibromyalgia pain can be severe at times, it doesn't damage your bones, joints or muscles. Some people worry that when pain worsens, it means that fibromyalgia is progressing. But that isn't the case. While increasing fibromyalgia pain can make it difficult to go about your daily activities, it isn't damaging your body.

Myth: You look fine, so there's nothing wrong with you.

Truth: You know this is a myth, but friends, family and co-workers who don't understand fibromyalgia may sometimes hold this belief. It can cause tension when others wonder if you're faking your pain because they think you don't look sick. Resist the urge to get angry and withdraw rather than explain how you're feeling.

Open and honest communication can help others better understand fibromyalgia. Be honest about how you feel and let others know that if they have questions, you're willing to listen and explain.

Myth: You were diagnosed with fibromyalgia because your doctor couldn't find anything wrong with you.

Truth: Fibromyalgia is a specific diagnosis based on your symptoms, not a diagnosis you're given when there's nothing wrong with you. The American College of Rheumatology developed a set of criteria to help doctors diagnose fibromyalgia.

Diagnosing fibromyalgia often takes time. Since there's no single test that can confirm you have fibromyalgia, your doctor will often run tests and procedures to rule out other conditions. Enduring repeated tests can be frustrating, but it's an important part of determining whether your symptoms are caused by fibromyalgia or something else. The results will guide your treatment.

Myth: Fibromyalgia causes pain. Those other symptoms you're experiencing must be caused by something else.


: Fibromyalgia can cause symptoms in addition to pain. Many people with fibromyalgia also experience fatigue and difficulty sleeping. Other fibromyalgia symptoms may include headaches, sensitivity to light, dizziness, memory problems, and numbness and tingling in your arms and legs. A number of other conditions commonly accompany fibromyalgia, including irritable bowel syndrome, bladder control problems and mood disorders, such as depression and anxiety.

Myth: No treatments for fibromyalgia exist, so it's no use going to the doctor.

Truth: There's no standard treatment for fibromyalgia, and the Food and Drug Administration has approved just one drug for treating fibromyalgia. But you have many options for controlling fibromyalgia pain, including medications, lifestyle changes, and complementary and alternative treatments. Often you'll need to try a few treatments in different combinations to determine what works best.

Myth: On days when you're feeling good, you should try to do as much as you can since you may be unable to accomplish everything you want on other days.

Truth: Overdoing it on the good days may catch up with you. You may feel exhausted the next day and your fibromyalgia symptoms could worsen. But that doesn't mean you should keep your activity to a minimum. Doing very little could weaken your muscles and increase your pain.

Cope with the good days and the not-so-good days by finding a balance. Pace yourself. Set goals for each day. Your goals should be reasonable. And they should include daily exercise and time for yourself, such as time to relax or listen to music.

Myth: Fibromyalgia is a life-threatening disease.

Truth: Fibromyalgia isn't fatal and it doesn't damage your body. Fibromyalgia symptoms fluctuate over time, sometimes getting worse and sometimes becoming milder. Fibromyalgia pain rarely disappears completely, but you can learn to gain some control over it.

Myth: You can't have a productive life with fibromyalgia.

Truth: Learning to control your fibromyalgia pain takes time. It's likely that the pain will never completely go away and you'll have to accept that your life might never be the same. But that doesn't mean your life can't be satisfying and productive.

Work with your doctor to adapt your daily activities so that you can have time and energy for what's important to you. Your strategy may include a number of approaches, such as setting goals, for instance, making time for relaxation exercises every day, or making lifestyle changes, such as walking most days of the week.

Here is a letter that a patient wrote:

Dear Friend's Husband, (left out name for confidential reasons)

I am not going to fuss at you for being upset about the situation with your stuff being in the wrong place or the dogs driving you crazy or the house being messed up, not at all. However, I am going to tell you what it's like to have fibromyalgia, "treated" and "controlled" fibromyalgia. I've had it for many years. At various times, I've been on up to 8 different medications simultaneously from the same doctor to try and control my symptoms.

You hurt all of the time. You stop complaining about it, because it doesn't change anything, so the only time you complain is when the pain is really bad. Not only do you hurt, but you constantly feel like you have the flu. It is described by some as "feeling like you have the flu and have also been run over by a Mack truck". The worst part for some (it's a different disease for everyone) is going from an intelligent, cognitive human being to one who sometimes forgets their own name for a short time, where they live, where they were headed, where they left the cat, if they "had" a cat. Imagine having the information you are seeking stuffed in a little locked box in your brain, with a brick wall around it on all sides. Sometimes it's like that. We won't get into the list of one hundred different symptoms, like irritable bowel syndrome, gastroesophageal reflux, unrelenting fatigue, a veritable cornucopia of crappy things to suffer.

Then there are the mood swings, the ones brought on (not by the depression this disease can so easily cause) by the neurological misfires in the brain that they can't explain. You can be happy one minute and in tears the next and "nothing" has changed, just that some of your hardware decided to misfire. And before anyone says that this is all in the patients head, they have proven that it isn't a "mental problem". And it does cause depression—why wouldn't it? You have to give up dreams and plans and change goals when you get this disease, just like with other disabling illnesses. A fibromyalgia sufferer (the arthritis foundation did a study—fibro patients have been found to have a lesser quality of life than both Rheumatoid Arthritis patients and Lupus patients) has triple the amount of chemical in their spinal cord that causes pain than 'normal' human beings. A minor injury to you is really painful to a FM patient. Their serotonin levels are frequently out of whack, making a healing restful sleep very difficult to come by—you don't get the deep restful sleep that your body requires to heal things like 'normal' people.

Fibromyalgia will never kill you, but you "will" sometimes want to die, at least, I do, just to get the pain to stop. Because being in pain all the time, without hope of a cure, is "exhausting" and incapacitating. Having people doubt your sanity just because your joints aren't swollen or you haven't got something they believe exists is horribly "depressing". I have forgotten what it is like to feel "good" and be without pain. I can't remember now if I ever really knew.

So be grateful that no matter how hard it is for you to accept the dog, your wife has something that helps her face each and every day, that keeps her from just laying down and dying. Because I can promise you, no matter how much she complains about her fibromyalgia, she's not sharing the half of it. And just to put something else in perspective for you—stress is what exacerbates the flare ups. If you have a horrible argument with your wife, three days later, she'll have a flare up and be in a great deal of pain. She can't help it, it's the disease. It isn't fair to the patient and it isn't fair to the patients family. It just is what it is.

here is another letter that someone wrote:

"But you don't look sick". Disease Stigmatized I would like to open by asking you to literally defy logic for now. Many of you have heard of an illness which is probably the most disbelieved illness to ever exist. It alters lives, causes many to lose jobs, careers, friends, spouses, and family members. Depending on what particular research reference is used, anywhere between eleven and fifteen million Americans have been diagnosed with Fibromyalgia. Many suffer in silence for fear of mentioning the name of the illness. Symptoms include severe daily physical pain, very chronic debilitating fatigue, flu like aches, numbness and tingling, cognitive impairment, all over stiffness, and balance/coordination n problems. Sensitivity to light, sound, and touch are present. Irritable Bowel Syndrome is also common with Fibromyalgia as well as bladder problems. No test can diagnose it. The stigma is emotionally very painful. Please, if you know of anyone with this illness and doubt it, finish reading this. For just a few minutes try to imagine the truth as being completely illogical. Fibromyalgia attacks people of all walks of life.Its victims are young, old, rich, poor, black, white and any other racial or ethnic group. It is prevalent in middle aged women, though it also attacks men and children as well. Weight has nothing to do with it. Victims of this disease range from underweight to the obese. The symptoms are much the same in all of them. So what I propose is a rhetorical question. "WHO are these people"? Some are your family members, friends, or co-workers. It could be any of us ranging from the cashier at Wal-Mart to your doctor or lawyer. It could also be YOU at some point in life. Why is this illness so disbelieved? I think I can explain. Never has the medical community or society in general been asked to believe an illness exists without some kind of objective evidence. In the case of Fibromyalgia, the evidence is all subjective in that the only things the physicians have to go by are the complaints from the patients themselves. Most of these patients "do not look sick". All lab work and a host of other objective tests are negative. This warrants even more of a stretch of the imagination for anyone to believe except the people who suffer the symptoms. So, how can anyone blame others for the disbelief? I know I cannot. However, I only ask that you consider the reality of this illness which is described by many patients as the "beast" or the "monster". Another reason for doubt is the way the disease presents. It changes from hour to hour and day to day for most. People even describe periods of "remission". This makes it even harder to believe. I will say that at one time in my life I may have thought of these patients as hypochondriacs or attention seekers. We have never known of an illness which could possibly be so unpredictable. So to believe that Aunt Sue was fine just this morning and suddenly is almost unable to move from the bed this afternoon is asking us to defy logic. Most of us would say that no one could experience that kind of change within a few hours. And "It could not be THAT bad". It naturally makes many think that Aunt Sue must be making this up or must have some mental problems. Fibromyalgia acts like a psychosomatic illness. However, please take a moment to consider the truth. The truth is that it is a very real physical disease and can be debilitating. Then how do we explain that maybe tomorrow Aunt Sue feels "all better"? And "She does not look sick". She can go for weeks sometimes and feel good. Then she could have a "flare" and be severely ill for weeks or months without any reprieve. Most of the Fibromyalgia patients I have talked to are people who have been very active individuals and tend to be the types whom have burned the candle at both ends most of their lives. Many are educated and have had businesses and successful careers. That is until Fibromyalgia moved into their bodies. However, some continue to function out of mind over matter principles. This technique of coping may only work to a point though. I must also add that Fibromyalgia varies greatly in severity from person to person. Therefore, what one person is still able to do may not be possible for another. In my experience of talking to many patients, the illness can progress contrary to most research data. However, in some it may never worsen. The stigma of this illness is probably one of the most painful facts of this diagnosis. It is the belief of this writer that many more men may actually have Fibromyalgia and choose not to seek medical help. So therefore, men may be under diagnosed as oppose to being the minority of the victims. Recent diagnoses have found Fibromyalgia to exist in children. It is becoming more common in teens though it is still rare for them. The stigma of non belief leaves its victims to suffer in silence sometimes. Fibromyalgia patients may present at the local emergency department. Often when they do go to an E.R., they are dismissed and belittled. Many are sent on their way and labeled as a "drug seeker" or "hypochondriacs". Stigmatizing the illness has caused many to suffer without medical care, with no pain relief, and no one around them who believes them. Suicide is common in these patients not from mental instability but from long term suffrage of severe pain. Let's talk just a minute about the very word "Fibromyalgia". Broken down from medical terminology it literally means pain in the muscles, tendons and ligaments. So how can we ask anyone to take it very serious and realize how severe the symptoms can be? The name does not describe the fatigue that is bone crushing. It does not indicate a cause or much of a description. After all, if you want to, you can describe "Fibromyalgia" as what you had yesterday after working out at the gym. Everyone has had some "Fibromyalgia"… Right? Well actually the answer is NO. In the opinion of the writer, this ailment needs a different terminology. This can be a kind of pain equal to that of cancer in some patients. It is often not phased by over the counter pain relievers. It comes and goes at will. The patient can feel as if they were literally beaten in their sleep with boards. But there are no bruises, so how can it hurt that bad? Fibromyalgia varies from mild to the most severe cases. The flu like aches of this illness are a hallmark. So in addition to pure stabbing or burning pain in certain areas of the body, the patient may also have all over flu symptoms minus the respiratory component. The deep aches you felt the last time you had the most severe case of the flu might be a description that comes close. Therefore, if you know someone with Fibromyalgia who says they are having a really bad day, please stop and think how hard it was to function when you had the flu. However, these flu like aches are often not relieved by Tylenol, Ibuprofen, Naproxen, or Aspirin. That would be one really big difference. Now, I have asked you to imagine the unbelievable so that for the sake of the patients with this stigmatized illness, it can at least begin to be understood. Many research data are available if you look for it. The theories range from the build up of toxins to an autoimmune disorder. It is, however, most recently believed to be a disorder of the central nervous system. If you are a physician and have turned away patients with these complaints, please think again. If you are a family member who is convinced that your relative cannot be ill because "They do not look sick", please reconsider. If you think your friend must be a drug seeker because she takes prescribed pain meds "But does not look sick", please give the benefit of the doubt. Yes, the symptoms move around and change. Yes they vary from day to day and hour to hour. Could one make this whole thing up? Yes. However, why would anyone make up a disease that they know people will not believe? Why would they make up these symptoms knowing that the very diagnosis comes with a severe stigma? I would suspect that people who are trying to fake an illness would pick something else. Not "Fibromyalgia". I am an R.N. I was diagnosed with this illness approximately five years ago when it became so severe that I could no longer ignore the symptoms. Previous to that diagnosis, I had never heard the term "Fibromyalgia". I also never took any prescription pain meds. I am 44 years old. I battle it daily with the doubts and labels. I am very very fortunate though to have a physician who knows this illness is real. He treats me. If not, I am not sure how I would still be functioning to this day. I fear a day will come when I am unable to work in spite of pain meds or Lyrica. I battle severe daily fatigue no matter how many hours I sleep. The fatigue is second only to the pain in my case. I do not write this article for myself or for sympathy for anyone. I simply write this because I belong to an online support group for Fibromyalgia. We currently have approximately 1700 members. Over the last several years I have met many patients who are treated less than human and dismissed to suffer without help. It disheartens me that any of the medical community could be so cruel and unbelieving in general. Many of these patients are doubted by their own family. Some have lost everything and are bedridden. In closing, will you consider defying all logic the next time you hear the word "Fibromyalgia"? Keep in mind that most of the patients "do not look sick". Debra Van Ness R.N.


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