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Getting a fibromyalgia diagnosis can be very difficult. This chronic pain disorder can cause issues that interfere with daily life. Going through the process of diagnosis takes a long time, so it is important to get started right away.
What Does Fibromyalgia Feel Like?
Fibromyalgia can be best described as joint pain all over. It affects the muscles, tendons, joints, and bones. People who have fibromyalgia normally describe their symptoms of having widespread pain, extreme fatigue, and tenderness in specific pain points.1
Widespread Pain - Musculoskeletal
The most common fibromyalgia symptom is widespread pain throughout the body. These pains happen above and below the waist and on both sides of the body. To get a fibromyalgia diagnosis, this pain has to happen for over three months. People do have varying levels of pain, and it can sometimes interfere with day-to-day activities.
Fatigue is another huge symptom of fibromyalgia. Many times, the constant pains can cause nonrestorative sleep and extreme fatigue. Sleep apnea, chronic fatigue disorder, and restless leg syndrome can all co-exist with fibromyalgia, and they have similar symptoms. Most people describe their fatigue as the day after recovering from the flu or lacking energy.
Fibromyalgia also causes extreme tenderness, especially in the pain points. Most of these are along the shoulder blades, head, and neck area. There are also pain points in the lower back, knees, and elbow. They can lead to muscle aches and stiffness, especially after exercise.
Because fibromyalgia affects the central nervous system’s pain receptors, slight pressure to joints and muscles can cause abnormal pain. It makes things such as elastic bands on socks, pants, or underwear much more sensitive.2
How Is Fibromyalgia Diagnosed?
Because fibromyalgia looks different in each person and looks like other disorders, it can be extremely difficult to diagnose. There is not a specific test that is used to diagnose someone with fibromyalgia. Instead, the person has to go through a process of elimination that can take a very long time to rule out other things.3
There is no fibromyalgia test. Doctors will go through a series of diagnostic tests to see if there is another condition that is causing the pain and fatigue. Doctors will start with a physical to find different areas where there might be a pain.
They will also draw blood to rule out some other disorders. After that, they will use x-rays of EMGs to view the bones and muscles.3 They will only do this if the patient lays out certain symptoms.
If the doctor can rule out all other conditions, they will give a fibromyalgia diagnosis. To be diagnosed, patients must have pain within the pain points for over three months. Overall, patients have to have widespread pain and symptom severity.
For pain to be widespread, patients must feel it on both sides of the body and below and above the waist. They will also receive a symptom severity score that takes into account cognitive symptoms, fatigue, and nonrestorative sleep. The person will receive a score between zero to twelve. Overall, they need a widespread pain index score higher than seven and a symptom severity scale score higher than five, orf a widespread pain index score between three and six and a symptom severity scale of nine or more.3
Because fibromyalgia is difficult to diagnose, some misdiagnoses take place each year. Fibromyalgia has symptoms very similar to several other conditions including chronic fatigue syndrome, rheumatic arthritis, migraines, irritable bowel syndrome, and sleep disorders. Misdiagnosis can lead to symptoms not being treated correctly, extending the pain and fatigue.4
With any misdiagnosis, there also come the risks of treatments that do not take care of everything that is occurring or making problems worth it. Therefore, you must be thorough during this process. Fibromyalgia also co-exists with several different conditions like irritable bowel syndrome, sleep apnea, migraines, TMJ, and rheumatic arthritis.5
Process of Elimination in Fibromyalgia Diagnosis
The process of elimination in fibromyalgia diagnosis is super important to make sure that misdiagnosis doesn’t occur. Doctors will go through several different things such as chronic fatigue syndrome, autoimmune diseases, irritable bowel syndrome, depression, anxiety, Lyme disease, celiac disease, hypothyroidism, and interstitial cystitis. Because there are so many different diseases that can mimic fibromyalgia, doctors will go through many tests to eliminate each one of them.
Rheumatic diseases, such as rheumatoid arthritis, are autoimmune inflammatory diseases. They are chronic diseases that cause inflammation of the joints and tissues around the joint. Fibromyalgia does not cause inflammation and is not an autoimmune disease. As such, doctors will be able to differentiate through blood tests and looking at different joints that are causing pains. These disorders can co-exist, but normally it is one or the other.6
Mental Health Problems
Fibromyalgia affects the brain and central nervous system. Specifically, it targets the same parts of the brain that normally cause depression or anxiety. Doctors might do an EMG to see brain activity. These conditions definitely can co-exist, but doctors will want to treat the depression and anxiety before giving a diagnosis to make sure that it isn’t just that. Approximately 30% of people who have fibromyalgia have been diagnosed with depression and 20% have been diagnosed with an anxiety disorder.6
There are several different neurological symptoms for people with fibromyalgia. One study found that 70% of people with fibromyalgia have photophobia, troubles with light sensitivity. Also, 63% of them have struggled with poor balance and more than half struggle with weakness or tingling inside of the extremities.
Because fibromyalgia affects the central nervous system, it can look very similar to several neurological disorders that have similar symptoms to those listed above. Doctors will do scans to monitor activity to try and eliminate some of these disorders.7
Sleep apnea occurs when somebody stops breathing while they are asleep. It makes it difficult to have a deep sleep. Fibromyalgia also causes nonrestorative sleep, making both of these conditions extremely similar when it comes to their side effects.
Doctors might perform sleep studies to rule out sleep apnea or other sleep disorders. However, both of these disorders can co-exist. Like depression and anxiety, doctors will normally treat sleep apnea first. If symptoms continue, they will continue to look into if you have fibromyalgia.8
The fibromyalgia impact questionnaire is used very frequently to help evaluate to see if someone has fibromyalgia. Doctors have worked on revising it for years to make it more accurate and beneficial to make sure they are giving correct diagnoses. After a doctor has eliminated a lot of other disorders, they will most likely administer this questionnaire.9
Some of the first signs that someone might have will be things such as fatigue, sleeping troubles, a lack of energy, memory problems, migraines, muscle twitches, spasms, cramps, numbness inside of extremities, and skin issues.10
People will also experience pain within the pain points throughout their shoulders, neck, head, lower back, and joints.
Fibromyalgia Pain Points
There are eighteen total fibromyalgia pain points throughout the body, also known as tender points. These pain points are near joints, but not directly on them. If someone has fibromyalgia, these can hurt just by slightly pressing on them.
People who do not have fibromyalgia will not feel pain when these points are touched. Doctors used to use these pain points to make a diagnosis of fibromyalgia. They have since stopped counting points and traded them to recognize that if someone has pain in multiple pain points, there is a likelihood for fibromyalgia. These pain points are located in the knee, arm, base of the skull, lower back, upper breast, hip bones, back of the neck, shoulders, and the lower part of your neck on the front side of your body.11
People tend to have a side effect called fibrofog, which encompasses having a variety of cognitive difficulties. Fibromyalgia patients struggle with working, episodic, and semantic memory. One study equates it to approximately 20 years of aging.12 Doctors will monitor someone’s memory to see if there are any issues.
Chronic Pain Symptoms
The most common symptom someone is going to have is chronic pain. After all, fibromyalgia is a chronic pain disorder. People will feel pain at slight touches from others, waistbands, elastic bands, tags, and simply brushing against something. Fibromyalgia causes a lot of muscle tenderness making the body very sensitive to pressure.
No matter what is happening, fibromyalgia causes people to have a lower quality of sleep. Doctors will normally ask patients how they feel in the morning and throughout the day to see if there are any signs of chronic fatigue. Also, people who have fibromyalgia might lose a lot of energy through simple activities or after standing up.
Fibromyalgia can cause numbness to settle into the arms and legs. Many people compare this feeling to pins and needles or a burning sensation. It is like the feeling when your foot falls asleep or just after it falls asleep and blood rushes back in. Numbness is very common among people who have fibromyalgia.
Over 50% of people who have fibromyalgia also show symptoms of irritable bowel syndrome. It is very common for people to display signs of diarrhea, stomach aches, cramps, and muscle aches.13
Due to the large overlap, doctors will normally ask a lot of questions about your digestion.
Finally, nonrestorative sleep is very common among people who have fibromyalgia. Due to overlaps with sleep apnea, restless leg syndrome, and other sleep conditions, likely, a person with fibromyalgia won’t gain energy while sleeping, just as if they had not slept at all. This aspect is a big sign of fibromyalgia when it coincides with muscle sensitivity.
Find The Right Doctor For Fibromyalgia Diagnosis
Due to the high rates of misdiagnosis, getting the right doctor is super important. Finding someone that will be thorough regarding testing for other possible conditions will help with quicker diagnosis. Consulting with an expert on autoimmune diseases like arthritis to start with is also a great idea.14
Diagnosing Can Be Difficult
There is not a test for fibromyalgia. This makes the diagnosis process long and arduous. Finding a doctor that works well with you during this time is super important. If you feel like you might have fibromyalgia, it is important to get started with the process right away.
A rheumatologist specializes in treating arthritis and any disease that affects the muscles, soft tissues, and joints. Rheumatologists might be the best person to talk to about some of the issues. They will be able to rule out arthritis and other autoimmune diseases. They will most likely have to make a fibromyalgia diagnosis based on the opinion of a neurologist and pain management doctor.
There are some huge risks when it comes to misdiagnosis of fibromyalgia which can lead to unnecessary medical treatment and less than average patient outcomes. This issue will also lead to excessive healthcare costs. Getting a second opinion from a very good research hospital can help make sure that you have fibromyalgia.
Why Is Misdiagnosis Common?
Misdiagnosis is common because there are so many conditions that mimic fibromyalgia. There are also a lot of co-existing conditions, so it can be super difficult to pinpoint. Since fibromyalgia is a process of elimination diagnosis, making misdiagnosis is a lot more common.
Fibromyalgia diagnosis is a long process, but it is very important. Doctors do their best to not misdiagnose it, so they take their time going through all the possibilities. If you are suffering from chronic pain, memory troubles, and chronic fatigue, it might be good to talk to a health care physician about having fibromyalgia.