If it’s taken you some frustration and missteps to finally get a fibromyalgia diagnosis, you’re certainly not alone. Some experts estimate it takes patients an average of five years to a get a diagnosis. But as some of you probably know it can take much longer. A definitive fibro blood test, however, could change all of this.
Fibromyalgia — a condition that sends your nervous system into overdrive and causes chronic pain, fatigue, brain fog and gastrointestinal tract (GI) issues — isn’t an easy condition to pin down. Fibro mimics the symptoms a lot of other chronic illnesses. Diagnosis is also complicated by the fact some doctors still don’t believe it’s a real condition, so you might get labeled initially with “just growing pains” or being a “hypochondriac.”
As doctors start to realize fibro is a real condition like patients have been saying all along, finding a definitive diagnostic test is top of mind. But because we still don’t know what causes fibromyalgia, it’s much harder to develop tests, effective treatments or even a cure because we still don’t know what cause to target. However, experts believe in the next five to 10 years, a definitive yes-no test for fibro will be available.
Two blood tests — FM/a and IsolateFibromyalgia — think they may already have the answer.
How long did it take for you to be diagnosed with Fibromyalgia? Help this Mighty community member out in the thought below.
FM/a Blood Test
Created by biomedical company EpicGenetics in 2012, the FM/a blood test was designed to confirm a fibro diagnosis. After your doctor fills out an authorization formto take the test, you get a simple blood draw. FM/a requires less than an ounce of blood and it’s compliant with the Food and Drug Administration (FDA). (Note: Not FDA approved, but follows the FDA’s guidelines for this kind of test.)
Your test results, which have to be sent directly to EpicGenetics and take about a week to process, are scored from 0 to 100. According to EpicGenetics, a score of 50 or more confirms your fibro diagnosis with 99 percent accuracy. The FM/a test is currently available in most of the U.S. and a few countries worldwide. Your private health insurance may cover the cost of testing, as will Medicare. However, in other countries like the U.K., it could cost upwards of $2,000.
The FM/a blood test and the science it was built on seem promising, and experts such as Ginevra Liptan, MD, director, The Frida Center for Fibromyalgia; author of “The FibroManual,” agree. However, Liptan also points out there are a few caveats.
The FM/a test was developed based on a study investigating patterns of specific signaling protein molecules that help drive your immune system called cytokines and chemokines. Scientists had already figured out that if you have chronic stress, you’ll have lower cytokine and chemokine responses. Additional research found that the cytokine and chemokine patterns when you have fibromyalgia are different enough to tell fibro apart from rheumatoid arthritis and lupus.
However, this study only discovered the FM/a test could tell the difference between fibro, healthy people and those with only two other specific autoimmune conditions. Researchers haven’t compared FM/a fibro-positive test results against other chronic illnesses, especially ones that look similar to fibro like chronic fatigue syndrome or Lyme disease. Therefore, we can’t know for sure how reliable the FM/a test is at detecting just fibromyalgia.
In addition, like other doctors, Liptan is skeptical of these two research studies backing the FM/a. Both included EpicGenetics founder, Bruce Gillis, as a co-author, which is a conflict of interest. Gillis would want the results of both studies to show his company’s blood test in a positive light. Until a neutral study is conducted, such as one done at a reputable academic institution, many doctors remain skeptical about the validity of the research and by extension, the FM/a test itself.
IsolateFibromyalgia Blood Test
IsolateFibromyalgia is another blood test that claims to be able to “rule in” or “rule out” fibromyalgia, according to its maker, IQuity Labs. Like the FM/a test, after a regular blood draw, you send samples to IQuity Labs to get your results in a week or less. The company says its test is more than 90 percent accurate.
If you want to try the IsolateFibromyalgia test, your doctor has to request it from IQuity Labs. The test has only been available since 2018, so there’s a good chance it’s too new to be covered by your insurance. In addition, according to the company’s website, you can’t get the test in New York yet because of licensing limitations. There’s no information on its website about international availability.
While the FM/a test is based on markers in your immune system, IsolateFibromyalgia looks at your RNA (ribonucleic acid), a type of molecule that essentially photocopies genetic information from your DNA (deoxyribonucleic acid) and transfers it to proteins that make up your body’s cells and help it function. Some research found that looking for a “microRNA signature,” specific patterns in your gene expression consistent with fibromyalgia, could be one way to make a diagnosis.
Using this research IQuity Labs, conducted its own study with more than 600 participants to prove the IsolateFibromyalgia blood test actually works. The study found the test could identify fibromyalgia compared to healthy people, autoimmune conditions, depression and other diseases used as controls in the research. Sounds promising. However, there’s a problem. IQuity Labs did its own research on its own blood test and it won’t say how.
The details of IQuity Labs, including its research methods or what exactly they tested, is a secret. The company won’t release that information, just the positive results it found, likely to protect trade secrets on how IQuity Labs analyzed patient RNA to find fibro. However, given IQuity Labs isn’t an impartial party and it won’t let doctors take a look at the research methods, IsolateFibromyalgia also gives doctors like Liptan pause until more unbiased research is published.
Would you try one of these blood tests for fibromyalgia? Download our app to more easily find out what other fibro warriors think!