I find myself in a very peculiar position with my health care right now. I am going to a pain clinic and seeing people I have never been exposed to before. I would think that they have come across so many pain patients that nothing would surprise them.
Indeed they are familiar with chronic migraines. They are familiar with fibromyaglia.
They are not familiar at all with what started my pain journey as a child. That seems to be so shrouded in mystery to this day because doctors are not familiar with it. Physiotherapists are not familiar with it. And it is hypermobility syndrome. I then say to them I am very double-jointed. And they go ‘oh!’ and get all fascinated by all the things I can do. But it is far more than that really since hypermonility syndrome and its more rare genetic versions of EDS Ehlers–Danlos syndrome have to do with a defect in the structure, production, or processing of collagen. The reason I say similar because Hypermobility syndrome has the same exact symptoms as EDS hypermobility. And there are more than a few symptoms listed in there. But hard to get any treatment for this if no one is actually Aware of the condition, isn’t it? It does require pain management. It does require doing certain kinds of exercise, and not other kinds.
Basically the only specialist that knows anything about this is a rheumatologist, which would be who originally diagnosed me.
I speculate I should be printing up information on my own and bringing it in with me to my doctor at the very least. Because someone should know about my treatment. I speculate I should mention it because I have been diagnosed with eczema and asthma and I am not sure either is actually true. I have fragile skin that bruises and bleeds easily, which will when scratched anywhere have blood rush up to the surface… something that is in line with hypermobility syndrome but I have been told looks like an eczema rash. But does it? It doesn’t act like it. And then the asthma. Yes, I have asthma like symptoms but have never had an actual asthma attack. And hypermobility syndrome can present with asthma like symptoms. I think it makes sense to know these things. Also know if I am even on medication I should not be on.
It did surprise me to say the least. I know that EDS is called a zebra disease… because it is a rare disease. I just thought that hypermobility syndrome was more common. I guess not. I guess when it becomes a ‘problem’ it is not that common at all. And it was a problem for me as a child. It was what caused my childhood pain. What likely was the cause of my childhood insomnia. And if you have chronic pain and insomnia as a child it increasing your chances of other chronic pain conditions and illnesses. Which it did. By the time I was twenty I had FM and migraines. By the times I was thirty I had asthma and hypothyroidism. All comorbid conditions.