My bendy legs
I have joint hypermobility syndrome (JHS), which - according to NHS Choices - means I have "an unusually large range of movement" in some or all of my joints (see pic). Or in the more succinct words of my doctor, I'm "somewhat bendy".
Lots of people are bendy and for many of them, it's not an issue. In fact, being hypermobile can be an advantage for people like dancers or gymnasts. But for me and for other people with the condition, JHS can cause a host of problems. That's why I sarcastically call it the "the gift that keeps on giving".
Pain
I frequently have - as do many people with JHS - pain and stiffness in my affected joints. In particular, I can feel extremely stiff after standing or sitting in the same position for a long period of time; my daily one-hour commute on the Tube can be torturous if I'm not able to get a seat. Sometimes, I become so stiff that I hobble around as though I'm a woman in 80s not her in 30s.
To be honest, I don't help myself - I'm meant to do exercises to help strengthen my joints and lessen the pain, but I just can't motivate myself to do them. For the few weeks that I did try to do them, it felt like all pain and no gain. I've also been prescribed amitriptyline, which I only took one pill of. After reading about some of the potential side-effects (which apparently include confusion, constipation, and numbness), I decided I'd rather put up with the pain.
As far I understand it, there's not a definite causal link between JHS and PoTS but people with PoTs are often found to be on the bendy side. I, to be clear, don't have PoTs, but I do have a fair few of the symptoms - including fainting, extreme fatigue, and memory fog (when you literally lose the ability to think straight). I also have exercise intolerance, which basically means I pass out after doing anything remotely strenuous. The absolute kicker is that exercise is meant to help the symptoms of PoTs (as well as those of JHS). So I'm in a vicious circle. I don't do exercise because it makes my symptoms worse but my symptoms don't get any better because I don't do exercise! The key is apparently do gentle exercises rather than going nuts at the gym but, again, I suffer from a tragic lack of motivation.
If you want to know more about PoTs, click on the link above
Without wishing to sound too indelicate, I can feel quite "uncomfortable" because of not being able to, er, powder my nose when I feel the need to. This apparently is to do with having a hypermobile gut and not processing certain foods the right away or something. After faffing about with the low FODMAP diet (very complicated, so click the link for a proper explanation), I eventually decided to cut out both gluten and dairy from my diet. It's a been a complete palaver cutting them out (and still is), but it's been worth it (sort of).
I only discovered that I had this little gem last year. With a hiatus hernia, part of your stomach moves up into your chest (hypermobility at work again) and causes lovely symptoms such as acid reflux and pain when swallowing. As a beautiful bonus, you're diagnosed by having a tube shoved down your throat (gastroscopy). This Is Not Pleasant.
Other joys of JHS include (but are not limited to) joint dislocation, clumsiness, and thin/stretchy skin. I've never dislocated a joint (yet but one does like to have goals), but I'm renowned for my lack of spatial awareness (I failed my driving test six times) and my legs are covered in scars (from daredevil activities such as shaving my legs) thanks to my fragile skin.
I should acknowledge that I've got off quite lightly by comparison to what others with JHS have to deal with. But, I do wish if that I was going to have a syndrome that it didn't come with quite so many extras.
No comments:
Post a Comment