Thursday, 4 September 2014

My journey with Hypermobility Syndrome

When I tell people that I have Hypermobility Syndrome, I'm often greeted with a reply of "What's that?" In a nutshell, it's a hereditary disorder, the collagen in my body is faulty and makes me too stretchy and bendy! There is no cure for it. People that have this syndrome can be effected differently. For more info, check out the Hypermobility Syndrome Association.

How my hypermobility syndrome effects me

My ligaments are stretchy which makes me very flexible, but also means my bones dislocate, or partially dislocate, often. Sometimes I dislocate different bones multiple times a day. Hypermobility syndrome can effect the entire body as collagen is pretty much everywhere, ligaments, skin, organs, hair... For me it massively effects my joints, but I also have problems with my stomach so I am a vegetarian, and no longer eat dairy products and avoid fatty foods because my stomach can't handle any of that. I have a hiatus hernia where the top of my stomach can slip through my diaphragm, so must only eat small meals and not eat late at night. At 23 I had to have keyhole surgery to remove my gallbladder - although no proof that that's because of HMS, it's suspected that it is linked. I deal with high levels of pain daily and exhaustion is also a major problem (and also gives me brain fog, a reason why it's taking me so long to type this!).

It's a challenging thing to live with. I look well most days but at times can really struggle to do the simple things like get dressed, brush my hair and so on. Some days I can't walk as my bones just won't stay in their sockets and I literally have wobbly legs. Sometimes I'll be fine, and then all of a sudden my hip will dislocate or my knee cap will shoot out to the side. And it's not just my legs, pretty much all of my joints are bendy. I have big problems with my shoulders (that like to dislocate and flap about like chicken wings) my breastbone and ribs, and my back. Sometimes I have to cancel plans, and just stay at home and rest, even if I really don't want to. Other times, I will be OK to carry on with my support braces on or using my crutches.

What I do to cope

For chronic pain I use a hot water bottle, have warm baths, and do deep breathing exercises. If I've had a dislocation that won't go back in or I'm in extreme pain that won't shift then I go to the hospital. I am lucky in that I've only had to go to A&E twice for my dislocations as most seem to go back by themselves if I just try to stay calm. Most of my joints I've figured out how to manipulate them back in safely.

For exhaustion I just try to rest when I can. Not easy as I have two children and work from home, but I have a very supportive husband and when he's at work I just try to pace myself. I do make sure that anything I may need in an emergency (phone, crutches, support braces) are close at hand when he's not here to help.

Diagnosis, Physio, and the future

I got married in 2012 and the day before our wedding I unfortunately had a big dislocation of my knee. It was quite traumatic and I wasn't able to walk properly for months. (The wedding went ahead, and was awesome apart from me not being well enough to party afterwards haha).

I had physio for my knee and it really helped. However as the year went on my other bones started to hurt and slip out of place, especially my shoulder which had been part dislocating regularly for years. I went to the doctors but was always told "well you've had two children, aches are normal for parents".
Then one day I saw a news article about a girl that dislocated her jaw eating a burger. It told how she had Ehlers Danlos Hypermobility Type. I realised that I had every single symptom that this girl had, so after doing some online research I went back to the doctors. The first doctor I saw didn't know what I was on about, but after then seeing a different doctor, I was booked in to see a specialist Rhuematologist in December, 2013. She asked me lots of questions and checked me over and concluded that although EDS-Hypermobility type  is now thought as as being the same as joint hypermobility syndrome, as I don't have the stretchy skin or particularly easy bruising, I am diagnosed with joint hypermobility syndrome. Both are treated the same.

After my diagnosis I felt at first this feeling of joy of finally knowing what was going on with my body! I'd had all these problems and had often thought why do I keep getting ill, but now I understood that it was one problem, just effecting me in various different ways over the years. 

Everything was fast moving from that point onwards. I was offered physio sessions at hospital with a group of physios that were specialising in hypermobility. I attended group hydrotherapy physio weekly for a few months, and when that ended I was given group physio (which I am still attending). We go once a month and learn about the condition and how we can adjust to it, and are given exercises to do to build our strength. It's lovely to meet other people with HMS/EDS, and most of all, the exercises have really helped me! Some I just can't do, but that's all a part of the learning, knowing what helps me and what doesn't. I'm stronger since starting physio, I'm no longer as scared as I was, and because my muscles are stronger and  keeping the bones in place more, they're working at a normal rate and I'm not as exhausted as I was.  I still dislocate, but it's not as often thanks to physio. The nicest thing is being surrounded by people (even though it's for an hour a month) that understand. 

I now make sure I do my physio exercises every day, even if I can only manage to do a few. I'm connecting with others on twitter that have HMS/EDS as it can feel like lonely burden at times, and it's a great way of learning little coping tricks from others. I'm still nervous at times when I'm on my own, and I do worry that my children will one day have the same pain that I have. But then I think, at least I will know how to help them, and can get them diagnosed faster now that we know I have it. I'm feeling much more in control of my HMS, and am adjusting to the fact that it is a big part of my life and sometimes I need to adapt things, but it does not mean it has to control my life! 

I hope I haven't rambled on too long, and that this all makes sense!
Rachel x

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