Getting diagnosed with fibromyalgia can be a long and frustrating process. Fibromyalgia is a complex chronic pain condition that can be difficult for doctors to diagnose. There are no definitive diagnostic tests for fibromyalgia, so doctors must rely on a person’s symptoms and rule out other conditions. Advocating for yourself and working closely with your doctor is key to getting an accurate fibromyalgia diagnosis.
Educate Yourself on Fibromyalgia
The first step is to educate yourself as much as possible on fibromyalgia. Learn about the common symptoms, diagnostic criteria, and typical treatments. The more knowledgeable you are, the better you can communicate with your doctor. Some good resources include:
- Articles and information from reputable medical sites like the Mayo Clinic, WebMD, and Healthline.
- Books like “Fibromyalgia for Dummies” that are written for a lay audience.
- Fibromyalgia organizations like the National Fibromyalgia Association that offer education and support.
Track Your Symptoms
Keeping a detailed symptom journal is very helpful when trying to get a fibromyalgia diagnosis. For 1-3 months, record your symptoms every day including:
- Pain levels and locations
- Sleep disturbances
- Cognitive issues like brain fog
- Other issues like headaches, depression, anxiety
Also note potential flare triggers like weather changes, stress, physical activity, or poor sleep. Bring your symptom journal to appointments to share with your doctor.
Understand the Diagnostic Criteria
There is no lab test that can diagnose fibromyalgia. Doctors diagnose it based on clinical criteria that includes chronic widespread pain and other symptoms. The two main diagnostic criteria are:
- ACR 1990 Criteria: This requires having widespread pain for at least 3 months and pain in at least 11 of 18 specific tender point sites.
- ACR 2010 Criteria: This requires having widespread pain for at least 3 months and other symptoms like fatigue, cognitive issues, and sleep problems. Tender points are not examined.
Familiarize yourself with these criteria so you can identify how your symptoms match up.
See Your Primary Care Doctor First
Start by making an appointment with your primary care physician. Describe all your symptoms and specifically say you would like evaluation for fibromyalgia. Some tips for this appointment:
- Bring your symptom journal and any medical records related to your symptoms.
- Clearly state how long you’ve had chronic widespread pain and other major fibromyalgia symptoms.
- Be prepared to have a physical exam to identify tender points.
- Ask your doctor to do blood tests to rule out other conditions like thyroid disorders, vitamin deficiencies, etc.
Ideally your primary care doctor will be able to thoroughly assess your symptoms against the diagnostic criteria and diagnose fibromyalgia. However, some family doctors are not as knowledgeable about fibromyalgia, in which case getting referred to a specialist is recommended.
See a Rheumatologist
If your primary doctor is unsure about the diagnosis, request a referral to a rheumatologist. Rheumatologists specialize in musculoskeletal conditions like fibromyalgia. At this appointment:
- Clearly describe your pain levels, locations, and how pain interferes with your life.
- Explain all other major symptoms you experience.
- Bring your symptom journal and any previous medical records.
- Ask them to conduct a tender point exam if not already done.
Rheumatologists are often more familiar with accurately diagnosing fibromyalgia based on symptoms and ruling out other conditions. However, the diagnosis process can still take time and require multiple visits.
Consider Seeing Other Specialists
Some other types of doctors who may be able to help diagnose fibromyalgia include:
- Neurologist: Can help rule out neurological conditions with similar symptoms.
- Pain specialist: Familiar with diagnosing chronic pain conditions.
- Sleep specialist: Can evaluate sleep disorders commonly associated with fibromyalgia.
Seeing one or more specialists may uncover additional insights that can aid in getting the fibromyalgia diagnosis.
Get a Second Opinion
If your doctors are hesitant to diagnose fibromyalgia or doubt your symptoms, getting a second opinion from another primary care doctor or specialist is very reasonable. Look for doctors experienced in treating fibromyalgia. Bring all your records and explain all your frustrations with the process. A fresh set of eyes may help immensely.
Ask About a Diagnosis of Elimination
Another option is to ask your doctor for a “diagnosis of elimination.” This means testing for and ruling out other conditions that could be causing your symptoms. Some conditions that often get mistaken for fibromyalgia include:
|Condition||Key Differentiating Symptoms|
|Rheumatoid Arthritis||Joint swelling, warm joints, positive blood tests|
|Lupus||Butterfly facial rash, sensitivity to sunlight|
|Polymyalgia Rheumatica||Morning joint stiffness, high ESR/CRP blood tests|
|Multiple Sclerosis||Numbness, vision issues, balance problems|
|Myofascial Pain Syndrome||Pain focused in trigger points instead of widespread|
If extensive testing rules these out, it strengthens the case for fibromyalgia even without a definitive lab test.
Ask for a Referral to a Fibromyalgia Specialist
There are some rheumatologists and pain specialists who focus specifically on fibromyalgia and related conditions. Ask your doctor for a referral to one of these specialists. They will be highly experienced in making a fibromyalgia diagnosis based on a careful symptom evaluation and ruling out other problems.
Inquire About Clinical Trials
Given the difficulties in diagnosing fibromyalgia, you may want to look into joining a clinical trial. There are research studies trying to identify biomarkers and better diagnostic methods for fibromyalgia. Participating in a trial could help you get a firm diagnosis while also advancing fibromyalgia research.
Resources like clinicaltrials.gov can help you find fibromyalgia studies seeking new participants.
Get a Diagnosis for Other Symptoms
Since there is no definitive test for fibromyalgia itself, focus on getting diagnoses for related symptoms you experience instead, such as:
- Chronic fatigue syndrome: This requires 6+ months of fatigue plus other criteria.
- Insomnia: Keep a sleep log; may need sleep study tests.
- Depression, anxiety: Screening questionnaires can support these diagnoses.
- Irritable bowel syndrome: Identifying IBS criteria like chronic abdominal pain.
Having these health issues diagnosed alongside the widespread chronic pain still provides validation and guidance for developing a treatment plan.
See Different Doctors Until You Get Answers
Persistence and patience is key when seeking a fibromyalgia diagnosis. It is not unusual to have to consult with several different providers before one will fully recognize your symptoms and make the diagnosis. Keep seeing doctors until you find one who listens, understands fibromyalgia, and is willing to make the diagnosis so you can move forward with treatment. Getting a diagnosis can be exhausting but give you relief at the same time.
Consider Alternative Medicine Routes
If the traditional medical system is failing to help, consider exploring integrative or alternative medicine approaches to get diagnosed and find relief for your symptoms. Some options include:
- Acupuncture: Acupuncturists take a whole-body approach and recognize fibromyalgia.
- Naturopaths: Naturopathic doctors combine modern and alternative therapies.
- Chiropractic: Many chiropractors are well-versed in fibromyalgia symptoms.
- Massage therapy/physical therapy: Can provide symptom relief and validate your condition.
Seeing one of these providers may provide the fibromyalgia diagnosis and treatments you’ve been seeking.
Connect with Other People with Fibromyalgia
Discussing your experience with others who have gone through the challenging process of getting diagnosed with fibromyalgia can provide support. You can connect with others through in-person and online support groups. Knowing you are not alone in your frustration and struggles can help you stay strong until you get the help you need.
Request Disability Benefits
Although it can be a long process, you may qualify for Social Security or private disability benefits due to your fibromyalgia symptoms. Having an official diagnosis on record will strengthen your disability claim. Your medical records, symptom journal, doctor statements, and test results will all be helpful evidence.
How to Communicate with Your Doctor
Being your own best advocate is crucial when dealing with a condition like fibromyalgia that is difficult to pin down. Here are some tips for communicating effectively with doctors to get to a diagnosis:
- Come prepared: Bring symptom journals, medical records, test results, and a list of questions.
- Be clear and detailed: Explain exactly when symptoms started and how they impact your life.
- Mention diagnostic criteria: Note that your symptoms match up with fibromyalgia criteria.
- Repeat yourself: Keep reinforcing your symptoms at multiple visits.
- Ask questions: Inquire about diagnostic methods, other conditions, next steps.
- Seek understanding: Ask your doctor to explain their reasoning and thought process.
- Stay calm: Express frustration politely; anger will not help.
What Not to Do When Seeking a Fibromyalgia Diagnosis
While advocating for yourself, be careful not to make these common mistakes that could hinder getting a fibromyalgia diagnosis:
- Downplaying your symptoms or pain levels.
- Letting doctors brush you off or ignore your concerns.
- Getting confrontational or threatening with doctors.
- Exaggerating symptoms or pretending to have symptoms you don’t.
- Trying to diagnose yourself based on internet research.
- Giving up after seeing just one or two doctors.
- Missing scheduled appointments or being inconsistent with doctors.
Stay focused, be patient, and stick with the process until you get the help you deserve.
When to Get Support from a Therapist
Having your physical symptoms continually dismissed can take a psychological toll. If you find yourself struggling emotionally with the effort to get diagnosed, speaking to a therapist may help. Signs you could benefit from counseling support include:
- Feeling distressed, hopeless, depressed or severely anxious
- Obsessive rumination about getting a diagnosis
- Withdrawing from family and friends
- Difficulty participating in daily activities
- Trouble sleeping or concentrating
- Excessive irritability or anger
Therapists can help you process the emotional side effects of dealing with this frustrating situation. They can provide tools to cope and stay motivated until you succeed in your diagnosis quest.
When to Let Go and Move Forward
While persevering to get doctors to recognize your condition, it’s also important to know when to stop and move on. Signs it may be time to change course include:
- Seeing doctors fail to help despite multiple visits over a long time period.
- Feeling completely burnt out and depleted by the process.
- Having other severe symptoms that need urgent attention.
- Doctors start accusing you of exaggerating or faking symptoms.
- You have lost trust in the doctors you have seen.
At a certain point, continuing to chase a fibromyalgia diagnosis from dismissive doctors stops making sense. Focus on finding a doctor who will collaborate with you on symptom management rather than fighting endlessly for a label.
Getting diagnosed with fibromyalgia can be extremely difficult, but being an advocate for yourself and persistently working with doctors is the key strategy. While there is no definitive test for fibromyalgia, your symptoms, medical history, exam findings, and ruling out other conditions can get you to the right diagnosis. Keep learning all you can about fibromyalgia, meticulously track your symptoms, and seek out doctors knowledgeable in recognizing and treating fibromyalgia. With dedication and patience, you can get the answers, treatment, and validation you deserve.