It can be tricky to be diagnosed with Fibromyalgia since so many other things have to be ruled out with similar symptoms. So it can take a bit. Less than it used to but still on average five years.
In my youth
So my journey to diagnosis began young actually. I was complaining of pain as a child to my mom. Have literally since I remember had knee pain specifically. I developed insomnia. And I was tired all the time… to the point of skipping classes to sleep. Something was wrong. But what? This led to a lot of doctor appointments. Skipping class to sleep. I was so damn tired all the time.
As a teen
It took some time for me to be sent to a rheumatologist the first time. Took until I was 16. Because I had a high ANA count and had for years and was tested for it on a regular basis since I was a kid…. and my doc suspected rheumatoid arthritis. That specialist went through a thousand questions and did a physical. And he determined I have joint hypermobility syndrome… and was developing fibromyalgia. They are quite comorbid. And the hypermobility did account for the knee and joint pain for sure. In fact, it accounted for the fatigue and sleeping issues as well. Hypermobility syndrome actually has a lot of symptoms associated with it. But I noticed the pain mostly.
I used to rollerblade all the time… usually in the wee hours of the night because I couldn’t sleep. And it caused a lot of knee pain. As did my first job… LOT of knee pain from standing all the time. I just ignored it as best I could really. But it was definitely my most apparent pain. Even though I also ached a lot. Just a lot of overall pain that made me so fatigued all the time.
By the time I went to university I wasn’t feeling well. And it made me depressed. Because in no way could I keep up to my peers in all the things people do in university. So depressed I bombed my freshman year and took a year off. And then once I coped with the depression I went back… and figured out a way to pace my activities that worked for the pain I was in. And I was an honour student from then on. I couldn’t work during school though. But I did do summer jobs. Each of which caused me a lot of increased pain.
In my 20’s
However, I got worse not better. More tired. Fatigued sort of tired. More pain, all over. IBS. Cognitive issues. And the insomnia got worse because the pain did. I finally went to the doctor and complained about it all. I was like these are all the problems I have… and always have and I need something done about it. He did blood work. And I had a high ANA once again and once again he thought rheumatoid arthritis. And off to another rheumatologist.
The second rheumatologist at 20 was the one who diagnosed me with fibromyalgia. By then I had a family history with it as well as my father had been diagnosed. At this time the tender point test was still something they did. And I had a whole lot of pain in those spots for sure. In fact, symptomatically it was pretty obvious at that point it was fibromyalgia. The bloodwork just confused the situation… but 10% of the population has a high ANA count with no auto-immune conditions. Or so they told me.
So from 8ish to 20 was my journey to diagnosis. Complicated by the fact the joint hypermobility was causing a lot of those early symptoms. And when it morphed into fibromyalgia as well is anyone’s guess. I think at 16 I had FM myself but back then it was rare for someone my age to be diagnosed with FM… it wasn’t something they looked for in someone that young. He said I was developing it… and added ‘soft tissue pain’ to my diagnosis but never went as far as to say I had it. Yet four years later I met all the tender points and definitely had it by then.
As such, I learned to adapt and cope to the pain at around 18-19. I was struggling with it a lot. And that is why I took the year off university. Although working during that time didn’t help with the pain, I was able to adjust my mental outlook. And then finally figured out how to pace and be a student at the same time. So when I was diagnosed I was doing pretty good coping wise already. And certainly, they gave me no meds at that time as I was ‘too young for medication’. And no advice at all except ‘exercise’ which I was already doing (I walked everywhere I went in addition to my rollerblading)
Then at 20-21 I began to get the migraines. And they were frequent from the get-go but not yet chronic. And that did not help me cope at all. It was a real struggle to have both, unmanaged, and deal. But that is another story.
So it took some time for my diagnosis. But really it is so hard to say when I had fibromyalgia and when it was just the joint hypermobility syndrome. I just know everything got worse and the pain really became all over the place… although, damn, my knees still really bug me. So somewhere along the line it became fibromyalgia for sure. And about 8% of people with fibromyalgia have joint hypermobility syndrome. The two can mimic symptoms of each other. And one can be misdiagnosed with one and have the other. But, of course, both can occur at the same time as well. It just makes diagnosis tricky really.
I was quite relieved when I was diagnosed. Just the Knowing for sure what I was dealing with so I could cope properly helped a lot. Being undiagnosed for so long is frustrating. Something is wrong but you can’t explain it to people because that something has no name to it.
See more fibromyalgia posts
Fibromyalgia and sleep issues
Fibromyalgia is more than pain
Fibromyalgia awareness and stigma