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Life With Hypermobility Syndrome

An example of how bendy my bones/joints are due to Hypermobility/Marfan
At the end of my Marfan blog I mentioned Hypermobility Syndrome but I didn't go into detail about that so I thought I'd do that this time. Hypermobility is something I am hugely affected by & in my case it's called Secondary Hypermobility Syndrome, which means it's a symptom of something else. Lots of people are hypermobile, meaning their joints are more flexible than they should be, but it doesn't cause them any trouble & they aren't affected by any additional issues, so for them it's just called "being hypermobile" and there is nothing else to it. Hypermobility, or hypermobility Syndrome is what they call it when more severe symptoms are involved, such as pain & other things, which then means it could be part of something more serious & rare, and that's the case for me as I have Marfan syndrome. Since I was a child I have suffered from bad joints but I didn't get an actual diagnosis of hypermobility syndrome until I ended up needing a spinal fusion operation. I'm aware of the fact that most people have no idea what Hypermobility syndrome is, so before I talk about how it affects me I'll tell you a bit about what it actually means.

Hypermobility/hypermobility Syndrome as it's sometimes called, means that some of the joints (or all of them in my case) even my fingers & toes! are looser than they should be, this makes them weak & they slip out of place easily. Because the joints are too loose to support themselves, it makes them achy & painful the majority of the time. It affects me on the inside too due to internal tissue being too stretchy. Before I move on I should say that not everyone who has hypermobility syndrome will have another underlying issue causing it. People can just have Hypermobility syndrome alone, and also, everyone is affected in different ways, one person with hypermobility syndrome might only have 1 or 2 affected joints, another person could have all their joints affected by it, which is me!

The main thing I wanted to do today was get the point across that Hypermobility Syndrome is much more life altering than it sounds, people might hear the word hypermobility & think it means nothing more than a bit of extra bendiness. That statement couldn't be more wrong though & my own experience is proof of that. It's the reason my ankles throb after walking, the reason my knees are inflamed at the end of every day, it's the reason my hips constantly ache & my wrists are too weak to write/type without wearing a splint. Hypermobility Syndrome for me means I drop my toothbrush a minimum of 4 times every morning because my hypermobile hands/fingers are too wobbly to co-operate. It means I have to carefully plan what I'm going to do & how I'm going to do it, so that I don't put more pressure on my joints and it's the reason I need pain medication everyday. All of this is beside the problems I have with my back & the rest of my Marfan related symptoms.

Well I think I'm nearly done for now, I haven't said absolutely everything about my Hypermobility, this blog could go on forever if I was to do that lol. But I just wanted to give a bit of an insight into what life is really like when you are affected by these things. Hopefully people might now have a better understanding of what it means to have hypermobility syndrome as a symptom of Marfan, or even just Hypermobility syndrome alone. Thanks for reading. x x x


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