Fibromyalgia is a confusing disease, even for patients. Here are some questions every patient should ask after receiving a fibro diagnosis.
Getting a diagnosis of fibromyalgia is not easy. It can take months, and for some even years. For many patients who finally have an answer to their mysterious symptoms, it's a huge relief.
The problem is that sense of relief often makes it easy to forget to ask the doctor the right questions about fibromyalgia and what it means to live with the disease. These are the top questions that patients should be asking their doctor after they've received a diagnosis of fibromyalgia.
Are you sure there is nothing else?
The general protocol for diagnosing fibro is to rule out other autoimmune diseases like lupus and arthritis. Autoimmune disorders and metabolic disorders like thyroid disease often have the same symptoms and one can easily be mistaken for the other. Because there is no clear and concise test for fibro, any other condition that could mask itself as fibro must be crossed off before fibro is actually declared the culprit.
What are my treatment options?
Doctors should take the time to properly explain the different treatment options and come up with a treatment plan that is agreeable to both of you. There are a number of medications available to help with pain and other symptoms but, like anything else out there, they don’t always work. Many people who are dealing with fibro have to go through a trial and error that involves trying different therapies, including medication, to see what helps the most. The important part is that everyone, which means the patient and their doctor, is on the same page when it comes to treating the disorder.
Another thing for patients to remember is to research the drugs that are being prescribed. Get a good understanding of what they are used for. For example, what if you are given antidepressants rather than steroids, or pain medication? What is the difference and what are the exact reasons for giving you this kind of treatment?
What does this mean for the long term?
While an early diagnosis of any kind of disease is always better, it’s not always the case. This is especially true when trying to get a diagnosis on a disorder as mysterious as fibro. What does getting a positive diagnosis mean for you? Asking this question and getting the right answer from your doctor will help you learn what you need to know to self-manage the disease as part of your everyday life.
What if the medication doesn’t help?
If medications don’t help ease the symptoms, especially when they are paired with non-traditional treatment options, it’s okay to expect doctors to explore other medications, such as “off-label” medication.
“Off-label” medications are drugs that have gone through clinical trials—with good results—but have yet to be approved by the Food and Drug Administration for widespread distribution. It might take a few tries for patients to find the combo of medication and other therapies that work for them.
Exactly what kind of disease is this?
It’s easy to think that fibromyalgia is a psychological disease, especially since many people who are dealing with symptoms are being told that everything is in their head, the pain isn't real or that they are just being lazy. It’s also easy to think that when one of the most common forms of treatment is a course of antidepressants. The truth is that fibro is actually a disease of the central nervous system and dictates how the brain responds to pain. In other words, it sends the brain pain signals when there is actually nothing there to cause the pain.
So why antidepressants versus painkillers?
Patients need to get a good understanding of why they are taking certain medications versus others. In the case of fibro, some antidepressants can increase the serotonin and norepinephrine in the brain, which influences how the brain actually responds to the pain caused by the fibro.
What changes do I need to make to my life?
Fibro patients need to fully understand what they need to do to live with the disease. Relying solely on medication is not the answer. Despite the pain, the patient should exercise, and find therapies that complement their prescription. Yoga, Pilates and other low impact workouts are the best options.
How do I know that I’m doing too much exercise?
The only way is to pay attention to how the body feels. Through trial and error, patients will begin to recognize that they have taken their exercise regime too far and need to slow down.
What about flare-ups?
To help you learn to manage flare-ups, doctors should be telling their patients that the first step is to learn to understand what causes them, which means paying attention to what happens before a flare-up. Eventually, a pattern will emerge and it will be easier to avoid those triggers.
Where do I go to get support?
Doctors should be able to direct patients and help them access the support they need to live with fibro. If a patient is having a hard time explaining their disorder to family and friends, their doctor should invite them to join in on appointments. This will help patients begin finding their support system.
Don’t be afraid to ask questions
Fibromyalgia is a chronic disorder that will most certainly impact every aspect of someone’s life but, it does not have to a life sentence. With the right support from their family, friends, and doctors, those with fibro can learn to live with their disease and still enjoy doing what they love to do. One of the easiest ways to do that is to never be afraid to ask questions.