Imagine having flu-like symptoms for a year. Every day you endure the muscle aches, fatigue, headaches and brain fog that are characteristic symptoms of catching a virus or having a bacterial infection. To make matters worse, the doctors tell you that nothing is wrong with you; it’s all in your head. Welcome to the world of fibromyalgia.
What is fibromyalgia?
Once thought of as a muscle or joint disorder, doctors and researchers are just now starting to realize that fibromyalgia is actually a disease that is related to the brain. It involves the nerves and neurons triggering a pain response with no probable cause and,unfortunately,no clear cut cure.
Essentially, it’s like your brain tells your body that it is injured and in pain (such as when you touch something hot), but nothing has happened that would actually cause a pain response. In addition, it never lets the pain go. It’s like the pain switch has been flipped to the ‘on’ position and never gets flipped back ‘off’.
What are the symptoms?
One troubling issue with fibromyalgia is that the symptoms present themselves differently in each person that has it. This, of course, makes it all the more difficult to come up with an appropriate diagnosis. That being said, there are some factors that do often present themselves in a majority of the people who have it.
Generally speaking, the most common symptom of fibromyalgia is pain. It is an all over the body type of hurt when there is no outward reason for this rather unpleasant and sometimes debilitating sensation. Several sufferers refer to it as “feeling like I’ve been hit by a bus” or, as indicated above, having flu-like body aches; they reference having headaches, back aches and joint pain.
Another common symptom is fatigue.It’s a feeling of waking up in the morning and still being as tired as the moment you lied down. It often also involves lying in bed and being unable to get restful slumber, or having insomnia. Essentially, you lie around all day and don’t do a thing because you simply don’t have the energy to do anything that requires any effort.
Some people with fibromyalgia suffer from Irritable Bowel Syndrome (IBS) and others fight with depression and/or anxiety. There are reports of having a “brain fog” and not being able to think clearly.
What makes fibromyalgia so difficult to diagnose?
Although people have been suffering from this extremely painful and often debilitating disease for ages, it has only been the last few decades that have turned this “phantom disease” into a reality. According to the US National Library of Medicine, National Institute of Health, criteria for fibromyalgia weren’teven established until 1990 so people were often misdiagnosed with some form of muscular rheumatism up to that point in time.
What are the criteria? The American College of Rheumatology has said that a person has to have widespread pain of moderate to severe intensity for three months or more and there can be no other medical explanation for the pain.
Because this condition is still relatively new to the medical field, there isa lot of questions as to whether today’s doctors are still missing the mark with a proper diagnosis in the patients that have it. It even prompted Dr. Oz, from The Dr. Oz Show, to run a special on it titled: The Disease Your Doctor May Miss: Fibromyalgia.
In this three-part series posted on the show’s website, Dr. Oz speaks with Dr. Jennifer Caudle and Dr. Sean Mackey, Chief of Pain Management at Stanford School of Medicine. They discuss fibromyalgia in its entirety; from causes and symptoms to how numerous doctors are failing to diagnose it correctly in their patients.
Dr. Oz states that it takes an average of three doctors’ visits to even get a diagnosis. And, some people (like his guest, Judy) wait a year or more. Why is it so difficult to identify?
According to Dr. Caudle, there are no real testing measures that can say that you have fibromyalgia. While other diseases and conditions can be identified via blood tests or x-rays, for instance, there are no tangible tests that a person can undergo to say definitively that they have it. It’s almost a disease by exclusion of any other plausible explanation of the symptoms one feels.
Who is most at risk?
According to the Centers for Disease Control and Prevention, it is estimated that 2% of the population have this condition (which equated to roughly 5 million people in 2008, which is the latest statistic that they offer). And, while no one is free from the risk of fibromyalgia, certain people have a higher likelihood of a diagnosis than others.
For example, women have a much higher risk than men of being diagnosed with this disease. Experts range in their estimates on this matter, but most seem to believe that it is somewhere between 75% and 90% higher.
Also, there is question as to whether it runs in families so there is concern as to a possible genetic component. As Dr. Caudle points out in the Dr. Oz interview, fibromyalgia can “co-exist with other medical conditions” such as rheumatoid arthritis and lupus, which may magnify the symptoms and increase the pain.
Although they don’t really know the causes of this condition, a person who undergoes a traumatic event has an elevated risk of developing fibromyalgia. Dr. Mackey points out that people who are subjected to trauma, major injury or that have Post Traumatic Stress Disorder (PTSD) have a greater likelihood of the coming down with the disease. It’s possible then that stress of the event triggers it and/or magnifies its symptoms.
What can you do if you have it?
So, what can you do if you have been diagnosed with fibromyalgia? Luckily, you have many options.
One of the most common is medication.Some people with this pain inducing disease take pain relievers and/or anti-inflammatory medications to help ease the symptoms. While you can certainly get relief with both of these, they shouldn’t be counted on as a long term solution. Taking a lot of medication over an extended period of time can be difficult on your body and create additional problems (such as with your stomach or kidneys).
Other options are therapy based, such as going to the chiropractor, getting massages, and acupuncture. If you have medical insurance, it may pay for some or all of these forms of treatments. If not, some businesses and organizations are willing to give their clients out of pocket rates, which may help you get the relief you need without breaking your pocketbook in the meantime.
What lifestyle adjustments can you make to ease the pain?
Although fibromyalgia is recognized as a ‘disease’, there are many things that you can do on your own to help ease the pain. These are things that require no prescription of sorts, but rather taking care of your body.
First, you can make sure you get adequate sleep. If you’re staying up late at night only to get up super early in the morning, night after night, you’re going to feel worse. Even someone without fibromyalgia is going to feel the effects after time, so it only goes to reason that this type of lifestyle can aggravate any medical condition you may have.
What can you do to make sleep come easier?
Go to bed and get up at the same time every day
Darken your sleeping quarters as much as possible; especially if you work nights and have to sleep during daylight hours
Turn the alarm clock display away from your head so that the light doesn’t interfere with your body’s natural desire to sleep
Avoid the computer or video games within 2-3 hours of bedtime
Keep the television in your bedroom off when you’re trying to fall asleep
Have a warm glass of milk or chamomile tea just prior to bedtime
Take a long, relaxing bath with nice, slow music
Meditate to clear your head of any of the day’s happenings
Turn off your cell phone or any other media that automatically alerts you of incoming messages
All of these things will help slow your body and mind down so that it welcomes the recommended 7-9 hours of slumber. Try to avoid taking sleep medications on a regular basis as your body will learn to rely on them and make natural sleep harder.
Another lifestyle change you can make is to become more active. It may seem harder than ever to increase your physical activity when you’re feeling extremely tired and fatigued all of the time, but research studies have found time and time again that exercise has a very positive effect for fibromyalgia sufferers.
Here are some great low-impact options that will keep your body busy and alleviate some pain:
Walking – Do it in the morning and you’ll start the day refreshed; do it at night and you can walk off some of the stress that the day has brought on.
Bicycling – Whether you are on a stationary bicycle in a spinning class or take your two-wheeler out on some local trails, this exercise will tax your legs in a way that is good for them. Plus, it is easier on your knees if you experience a tremendous amount of pain in those particular joints.
Dancing – Slow dancing or ballroom dancing can help you work up a sweat even though they traditionally aren’t super intense. Also, you use a lot of muscle to stay in good form. This will keep you toned and taut and your body will have an easier time overcoming the symptoms that fibromyalgia typically brings about.
Yoga – Performing this age old exercise technique is not only good for your body, but it is also great for your mind. It helps you relieve stress, which is great since traumatic events (that are usually laden with stress) are one of the possible causes of this very painful disease.
Gardening – Most people think of gardening as a relaxing activity, but it is also very beneficial to your health. It keeps your joints and muscles limber and you get to enjoy some fresh air in the process.
Of course, you can do pretty much anything as long as it keeps your body moving and isn’t too hard on you. You certainly don’t have to train to win an Iron Man or Woman competition to get some relief from the pain (nor should you).
Additionally, if you have a physically demanding job, you may want to reconsider it. Your constant movement could be making your symptoms worse and be putting you through much more suffering than if you worked a less taxing job, such as in an office setting or as a teller or checkout clerk.
Another consideration is to make dietary changes. In his interview with Dr. Oz, Dr. Mackey points out that while no food really triggers fibromyalgia symptoms, people often find a lot of relief when they focus on eating healthy, nutritious foods.
Some great dietary advice that will help with fibromyalgia includes:
Eating a lot of fruit and vegetables. The key here is to choose foods from a wide variety of color hues. Go for oranges, reds, blues and greens as each one has their own nutrients and the more you get, the better off you are. Aim for 5-9 servings a day. (As fruit is higher in calories and natural sugars, you may want to limit your consumption and try to get more veggies instead.)
Getting enough whole grains. A lot of people believe that carbohydrates are the enemy and avoid them at all cost. However, not all carbs are bad. When you eat complex carbs (like whole wheat bread, barley, oats, and such), your body gets much needed energy in a way that doesn’t induce a blood sugar spike like not-so-good carbs (such as candy, cakes, desserts, chips, and crackers).
Consume lean protein. Part of eating a healthy diet includes choosing proteins that aren’t high in saturated or trans fat. Options that meet this criteria include eggs, lean beef or pork, chicken, turkey and seafood. If you pick fish like tuna and salmon, you’ll also give your body a healthy dose of Omega-3 fatty acids which are very good for your heart.
Essentially, you need to pay attention to how foods make you feel. It is recommended that you keep a food diary for 1-2 weeks and note if you feel better or worse after consuming certain foods. If you believe that a certain food is making you feel ill, try eliminating it for a few weeks and see if you notice a difference.
Also, as fibromyalgia is thought to be stress or trauma induced, it is very important to relax your body as often as possible. Make it a priority to relieve your stress and let your body rejuvenate itself.
Some things that can help you relax and ultimately deal with life’s ups and downs are:
Practicing regular meditation
Undergoing counseling or therapy
Talking with a close friend
Listening to soothing music
Engaging in a hobby that brings you joy
Enjoying quality time with family and friends
Surrounding yourself with positive people
Signing up for motivational emails or updates from uplifting social media profiles
Sitting outside and just watching nature
Getting a massage
Basically, anything that brings you joy and takes your mind off your problems will benefit you. It will give you a break from reality and let you smile and laugh, which helps your spirit just as much as it does your body.
Finally, as Dr. Caudle recommends via her interview with Dr. Oz, get a doctor you feel comfortable with. As fibromyalgia is often misdiagnosed or under diagnosed, it’s very important that you have a doctor who recognizes it and is willing to help you treat it.
If you feel horrible yet all the test results continue to come back negative, you can easily feel like you’re losing your mind. And, if your doctor believes that you’re either a hypochondriac or just feeling the effects of stress, then you’ll spend a lot of time wondering what is wrong with you – all the while not getting the relief you desire and, quite frankly, deserve.
Therefore, it is important that you doctor with someone that you trust and someone who will give you a proper diagnosis. You need to be your own advocate and not stop until you get satisfactory answers.
In summary
Fibromyalgia is a very real condition that can cause a high level of pain to its sufferers. And, although it isn’t a lethal condition, it does interfere with your quality of life because of the pain and fatigue, which can be just as detrimental.
There are no known causes, but it has been found to be triggered by traumatic events and genetics may play some role as well. It is more prominent in women than in men, and it can co-exist with other just as painful medical conditions such as arthritis and lupus.
Treatment of the symptoms ranges from medication and doctor involved therapy to lifestyle changes such as eating right, exercising and reducing stress. Of course, sleep is an important factor as well, so you’ll want to make sure you don’t skimp in that area of your health regimen.
Also, make sure you doctor with someone you trust; someone who will help you deal with the pain. The sooner you get it under control, the sooner you can live a quality, happy life.
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