Fibromyalgia — an ongoing condition that causes persistent widespread pain, fatigue, and sleep problems — can be difficult to diagnose. There’s no specific blood test for it. And because the symptoms overlap with many other conditions, it can be easily confused for something else, like thyroid disease or inflammatory arthritis.
Being a strong self-advocate can help you get the right diagnosis sooner. And while there’s no known cure, treatment, lifestyle changes, and medications can make a big difference when it comes to how you feel.
Here’s what you need to know.
Doctors Dismissing Symptoms and Test Results
Educator and advocate Alicia Trautwein’s symptoms started at age 13. Five years would pass before a doctor confirmed the cause was fibromyalgia.
Knowing the most common symptoms can get you a diagnosis sooner than later. They include:
Widespread pain. Fibromyalgia pain is a deep muscle ache that’s often described as dull, throbbing, burning, stabbing, or shooting. It often occurs in soft tissue areas like your:
- Neck
- Shoulders
- Thighs
- Arms
- Lower back
- Rib cage
It also flares in areas around your joints, like your knees.
Fatigue and sleep issues. No matter how much sleep you get, you still feel tired when you wake up. Many people have other sleep disorders while living with fibromyalgia.
Brain fog. It can be hard to focus and pay attention. Some people call this “fibro fog.”
Morning stiffness. Many people wake up feeling stiff. Fibromyalgia can make body aches feel worse overnight.
Increased pain with stress or weather. Cold, wet weather and emotional stress can both make pain and body aches worse.
Flares. This is when symptoms appear suddenly or worsen. They’re often triggered by certain events, like stress, physical trauma, and infections.
Talk to your doctor if you have these symptoms. Especially if they’ve lasted more than three months or if you have pain in at least four body areas.
“When I first started this journey, I didn’t even realize I could speak up. Now, when I see something that doesn’t match up, I ask questions,” Trautwein says. “Most of the time, doctors will at least explain why they don’t consider a low result on lab work a big issue or be willing to consider more tests when you ask for further investigation into what's wrong with you.”
If your doctor dismisses your symptoms, it’s time to get a second opinion.
Pushing for the Best Treatment
While there’s no known cure, there are ways to manage symptoms.
Having fibromyalgia isn’t like owning a car, says Chris Morris, MD, a rheumatologist in Kingsport, Tennessee. There’s no owner’s manual that clearly explains how every part works and how to fix any problems that come up. The condition affects everyone differently, which is why it’s so important to figure out what works best for you.
“If you can help identify which components of fibromyalgia are the biggest issue, it can help get you the best treatment,” Morris says.
Some of the most effective treatments include:
Quality sleep. Practice good sleep hygiene, such as going to bed and waking up at the same time every day.
Exercise. Movement is some of the best medicine because inactivity can raise pain levels. Find a low-impact activity that feels approachable and enjoyable, whether that’s walking, swimming, or chair yoga.
Mindfulness and stress management. Activities like yoga or meditation can ease symptoms. And talk therapy can help with stress reduction. “Stress plays a big role, so learning how to manage it can make a big difference,” says Morris.
Medications. Prescription drugs like serotonin norepinephrine reuptake inhibitors (SNRIs), tricyclic antidepressants, and gabapentinoids are often prescribed to ease pain and discomfort.
Massages, acupuncture, and chiropractic care may also ease pain.
Keep your doctor updated about your symptoms and pain so they can make adjustments to your treatment plan as needed.
How to Practice Self-Advocacy
Self-advocacy means making sure your voice and your needs are heard when you’re meeting with your health care provider. Here are some of the best tools and strategies to help you be your best advocate.
Educate yourself. It can be overwhelming to sort through the amount of information. Ask your doctor to point you to reputable sources you can trust.
Make a list of questions for your doctor. Before you meet with your doctor, think about what questions you want to ask and write them down so you don’t forget. Preparing questions ahead of time keeps you present during the appointment. And they may encourage your doctor to take you more seriously. Consider listing them in order of importance in case you run out of time.
Bring family or friends to your appointment. They can take notes, ask questions you may not have thought about, and offer emotional support. More voices in the room can help yours get heard.
Keep a symptom journal. “For me, the biggest thing I’ve learned about self-advocacy is to document everything,” Trautwein says. “It means writing down all of your symptoms, taking that list with you to the doctor, and keeping records of what the doctor tells you.”
Connect With Others Who Have Fibromyalgia
Consider joining in-person or online support groups. Talking to other people who understand exactly how you’re feeling can do wonders for your physical and emotional health.
“Sometimes, it's group conversations. Other times, it's just someone sharing their own story and realizing how much you relate to it,” Trautwein says. “Many of the tools I use to help reduce my pain such as OTC creams, braces, exercises, and stress management didn’t come from a doctor. It came from conversations with others with fibromyalgia and what works and doesn't work for them.”
Final Thoughts
Fibromyalgia can be challenging to manage, but you are your best advocate. Don’t be afraid to ask questions, push for better answers, and find a provider who listens to you.
“Navigating through the fibromyalgia diagnosis and care taught me very quickly that no one is capable of advocating for you like yourself,” says Trautwein. “I had to learn how to speak up when I had concerns, and when to look elsewhere when I realized I wasn’t being heard.”
Show Sources
Photo Credit: DigitalVision/Getty Images
SOURCES:
Cleveland Clinic: “Fibromyalgia.”
University of Michigan: “How Health Care Companions Support Older Adults at Appointments.”
American Fibromyalgia Syndrome Association: “Fibromyalgia Symptoms.”
Mayo Clinic: “Fibromyalgia.”
Yale Medicine: “Fibromyalgia.”
Stanford Medicine: “Fibromyalgia.”
University of Georgia: “Self-advocacy in healthcare.”
