How is Fibromyalgia Diagnosed?
Up until recently, the primary method for how fibromyalgia is diagnosed was to rule out everything else, then if the doctor couldn’t find any other cause for widespread chronic pain, he’d apply pressure to 18 “tender points” and if the patient reacted with pain to at least 11 of those points, they’d be given a fibromyalgia diagnosis.
The problem is there are many other symptoms of fibromyalgia besides pain (although that is the key factor). The other issue is that our pain level and pain locations tend to vary.
One day I may have massive deep pain in my left leg, the next day I may serious nerve pain in my arms and almost all the time I have some level of TMJ pain (which involves pain in my shoulders, neck, and head.
In addition to pain, people with fibromyalgia also may experience insomnia, irritable bowel syndrome, irritable bladder, cognitive issues (memory, words slipping away before you can say them, focus, etc) and these symptoms were not taken into account under this diagnostic process.
In 2010 the fibromyalgia diagnostic criteria changed.
Fibromyalgia diagnostic criteria
The new criteria give scores based on how many places you have had pain in the last week, as well as how you rate other symptoms such as irritable bowel, insomnia, & cognitive issues. When all the scores are added up the doctor uses the complete score to determine whether you have fibromyalgia.
The good news about the score is that it is flexible looking for a total score of 12 or higher with at least 3-6 points on the widespread pain index and 9 on the other symptoms OR a score of 7 on the pain index and 5 on the other symptoms.
To me this makes sense and it seems that most doctors that agree with the existence of fibromyalgia already use these tools in their diagnosis.
The tender points make little sense to me, to be honest I had three doctors check my “tender points” and in all three instances they hit different places and those spots that were similarly checked did not always return the same results. There is also the issue of “what is tender?”
Having dealt with tender points for the last 2 years in relation to TMJ and having a dr press those every 2 months during that time I have a clue as to what the difference feels like.
There’s “oh you’re touching me”, there’s “that’s a little sore” and then there’s “Get your damn finger off me!” The middle one can be a little iffy sometimes and sometimes they are even points in between those levels. So it makes the whole thing rather difficult on both the doctor and the patient for diagnosis.
Updates to how fibromyalgia is diagnosed
In 2013, the landscape for diagnosing fibromyalgia changed again when EpicGenetics released their blood test for fibromyalgia. Unfortunately, in 2018 the blood test was still not covered by most insurance companies. The expense of the test means that it’s not widely used.
Sadly, there’s been very little improvements to the treatment of fibromyalgia in the past 10 years so a blood test doesn’t mean a lot.
Yes, it’s “proof” you can show to those who doubt any illness that doesn’t have a test to prove its existence, but it doesn’t change your treatment course (yet). EpicGenetics is also hoping to change that and will be using the blood test as a jumping off point to test a blood test for fibromyalgia.
We can hope that we’ll continue to see improvements both to how fibromyalgia is diagnosed and to how it’s treated.
- What you should know about the fibromyalgia blood test
- Fibromyalgia blood test may lead to vaccine
- Symptoms & signs of fibromyalgia
- The fibromyalgia treatments that have helped me most