I will be posting topics of interest for fibromyalgia awareness month and FM day on May 12th. I was diagnosed with Fibromyalgia when I was 20-21.
In my case, there was no clear Bam rapid onset trigger event. I had, well have, hypermobility syndrome (also known as EDS hypermobility) and amount other things it caused joint pain and insomnia in my youth. I believe it was this stress to my body that triggered the FM. As time progressed the EDS go more problematic and then I became quite fatigued and had pain all over the body. That became worse. More random symptoms cropped up included IBS. Migraines. Activities became more difficult. Standing for any length of time, staying in any position for any length of time. What complicates the issue to be honest is that EDS has a lot of symptoms associated with it as well. It was just the severity and the duration of the pain. The pain was quite different than I had previously experienced. The fatigue more intense. The insomnia more profound. The fibrofog became an issue. The are comorbid conditions. The difference is that doctors actually, Now, know a little about fibromyalgia even if they don’t actually effectively treat it. And they know absolutely nothing about EDS. And I mean nothing. So having the two is complicated. I am told to exercise for the FM but the EDS actually makes that quite difficult for me due to the very specific joint pain. I have have some luck with physio to work on those areas but it is profoundly exhausting. So while one might think the more you exercise the less painful short exercise bouts would be. And they would be wrong. Every bit of exercise is painful for me, which leads me to believe I am doing the wrong exercise for the EDS even though it is the right exercise for the FM.
It was as a teen I began to feel the impact and I was a slow onset case. I cannot to this day determine if it was the EDS getting worse or the FM showing up. I do know I was diagnosed with hypermobility syndrome at 16 and that specialist had seen indications of FM and soft tissue pain. So it sounds like I was on the cusp of full-blown FM. However, it was hard to diagnose children back then so it is hard to say. I know I ached all the time. I used to skip school just to sleep. I was just always so tired. I had bad insomnia, as in worse, than it had been as a child but not as severe as it is now. The pain due to chronic migraines makes it worse now than it was then. I had severe headaches around my cycle that I now suspect were migraines. Since I did have auras that I had no idea were auras until much later. Even when I got migraine with auras I didn’t realize the ones I was getting then were auras because they presented quite differently. I wasn’t overweight and I did exercise regularly. Not like excising helped at that point, but maybe it slowed things down. They may say weight has an impact, but it seems to me the meds they put us on are the ones that cause the weight… so who is to blame there? However, I do have close relatives with FM, my father for one. So there is the genetic component as well as the comorbid trigger. So I pretty much believe I was a slow onset case due to the pre-existing condition causing stress on the body. And it wasn’t really until that 16 age point that I began to feel the impact of it.
At which… it picked up speed. At the age of 20, I had gone to the doctor again due to the pain being substantially worse. I explained the joint pain was due to the hypermobility syndrome, which the doctor knew nothing about. And said I just felt pain everywhere, to be honest. Explained how unwell I felt. How tired. How foggy. How it just felt so much worse than it had been. Now he didn’t jump on the FM bandwagon. He, in fact, did the same as my previous doc did he tested me for RA. And I told him my ANA count would be high. It is an abnormality I have that some people just have without having lupus or RA. It came back high and off to the specialist I went. By then my father had been diagnosed with FM. I had the history. I had worse symptoms. I hit all the check-boxes. All the tender points. And there you go. FM. Horrible test back then with the tender point test. Very, very painful. They no longer do that because someone can have not as many tender points but very high on fatigue and cognitive dysfunction… and still, have FM. I actually got worse after my diagnosis. Due to my migraines becoming chronic. Due to developing IBS, which I had not actually had at all.
So that is the bit of my FM history. It was a case of early onset for sure. So I have been chronically ill for quite some time. When I was a kid I used to complain about joint pain due to the EDS but in that case it was manageable and I did do a lot of exercises… not because I am the least bit athletically inclined or a ‘team player’ but because my mom got my brothers’ and I involved in various activities to socialize and for general health. Get us out there and involved. I feel that was the best treatment for my EDS. Considering it wasn’t diagnosed and doctors have no idea how to treat it anyway. So I think we did well there. Had that been diagnosed early and treated by that one doctor in Canada that knew what he was talking about back then I likely would have had to do physio to strengthen all those joints. And exercise in specific ways. But even now there is no awareness out there about that. Back then… hypermobility syndrome wasn’t even classed as EDS. It wasn’t even seen as having all the symptoms it has. Just super double-jointed. Not a collegen problem throughout the body. I am glad that is the one I had and not a more severe case of EDS where it can be dangerous. It was the start of my pain history but so mild that it doesn’t stick out in my mind. Well, not true. There were incidents where I stood for long periods of time with my gimpy backwards knees and the pain was immense… then once I sat could not stand again due to the pain. So incidents like that. Speckled in there with many sprains, some not healing well. I envy this pain history. This was the Good part.