Yes, I am an octopus.
Ok, I’m not actually an octopus. I do have bones- all of them, in fact. The thing is, my joints are just super-flexible. I was diagnosed with Joint Hypermobility Syndrome in 2015- at the age of 24. Yes, ladies and gentlemen, it took 24 years for the medical profession in the UK to find out that I was hypermobile even though the signs and symptoms were there all along. Don’t get me wrong, for some people, being hypermobile or ‘bendy’ is actually very beneficial. It enables them to be better at things like gymnastics, ballet, dancing and acting in general. It’s when the chronic pain and fatigue go along with it that it becomes an issue.
My partner and I have become members of the Hypermobility Syndromes Association, a fantastic association which helps support the people and their families when they are diagnosed with hypermobility. I am really glad I found them, because before I was very much in the dark. I was officially diagnosed by a rheumatologist with the syndrome after going through various referrals, and then referred (again!) to a physiotherapist. It was thought that the physiotherapist would help me out by sharing information about what I can and can’t do, how to live with the pain, etc. All she did in truth is look at my legs when standing, told me to get used to my insoles, as that was the only problem she could see, and do some lumbar exercises when my back hurt. Oh, and lose weight. How I was supposed to lose weight was anyone’s guess- I couldn’t get an answer out of any of the professionals I have seen. So, I have taken myself to the dangerous realms of the internet, and figured out a plan with a personal trainer at the gym to help strengthen my muscles. So far, the personal trainer has been more understanding and helpful than any of the doctors. I joked with the physiotherapist that I needed new legs. The only reply I got was ‘Oh, you’re not the only one’ in a very snarky tone. However, I digress.
So what is hypermobility? It’s easy enough to throw the term around, but what actually is it? From the information booklet supplied from the HMSA (Hypermobility Syndromes Association), the main symptom that hypermobility is present is an issue with the body’s connective tissues:
“In HDCTs (Heritable Disorders of Connective Tissue) the body’s connective tissue proteins that give the body its intrinsic toughness, are affected. A person’s joints are lax because they have inherited looser and stretchier connective tissues, particularly their ligaments and tendons. Hypermobile people can easily injure joints, ligaments, tendons and other ‘soft tissues’ around joints because their joints can twist, or over extend easily, may partially dislocate (or ‘sublaxate’), or in some cases may fully dislocate.”
So that’s the basics- and one reason I claimed I was an octopus. More issues that can happen depending on the individual include severe fatigue which does not abate after a good night’s sleep, as well as early muscle fatigue. This early fatigue could make it very distressing for the sufferer, as apart from the pain in the muscles, the rest of the body may be reacting ok to the exercise.
Issues may also be found at a deeper level, in the skin and internal organs- it’s not just the joints and muscles surrounding those joints which contain these soft tissues. This can lead, in some people, to issues with the gastrointestinal system, the autonomic nervous system as well as with bladder function. Not everyone who has been diagnosed with a hypermobility disorder will have the same issues. As said previously, many ‘bendy’ people never experience pain symptoms and live pain-free lives- so if you realise your thumb can touch the inside of your arm, don’t necessarily worry. I’ve known plenty of people in the past who can do that have no issues- for some professions like a ballet dancer, being hypermobile is a plus!
It wasn’t until I was diagnosed as having a hypermobility syndrome and started to do some digging that I realised the correlation to some other issues I have. I have always had pain in my ankles and knees, and was told at about age 11 that I was an over-pronator. I don’t recall a mention of hypermobility then, but it may have been something that was just regarded as already known- I mean, at eleven years old, someone must have spotted it already, right?
I’ve always bruised easily and had no idea why- I also got stretch marks super early and thought my skin was breaking. My balance has always been off and I’ve always had issues with standing up too fast and feeling dizzy- blamed it on my height, as I’m 5’9- tall for a woman. I also have had issues I thought were related to coeliac disease or perhaps a lactose intolerance- although the doctor did tests, when the coeliac tests came back negative, it was just abandoned. Seeing it all related makes me feel somewhat happy that I now have more of an idea of what’s going on, but it also makes me worried because of the impact it could be having on so many people and they just don’t realise.
I am lucky in a way, being diagnosed as an adult. It’s a shame I wasn’t diagnosed as a child, because I would have got out of doing the cross country (boo!) but being an adult at the time of diagnosis I think really helped me out because I could better understand the terms and manage my own pain- I didn’t have to rely on someone else to administer the medication, etc.
So a huge thank you to the HMSA- you have really helped me understand my condition more than a doctor has in the diagnosis period. If you are unsure as to whether you have a related problem, the first stop is always your GP. They can then refer you to a related service which will be far better to diagnose you than WebMD! Your GP will have many links within the medical world, and should know exactly where to send you for help.
If you want to find out more information about the HMSA, you can do so via their website.
You can find out more about Casey by following their Facebook page here.