What you need to know about Hypermobility Syndrome.
Hypermobility just means you are flexible right? Must be fun right?
For as long as I can remember I have been different, I have suffered with pain and a number of health issues. I can bend into unusual shapes with ease but ask me to stand straight, walk for a short amount of time, hold a pen, cut my food and any other normal everyday tasks and that’s where the trouble starts. These normal tasks can cause me an awful lot of pain and fatigue and usually make my joints pop out of place.
If you have been diagnosed hypermobile or perhaps you suspect you may be a fellow bendy then this blog is for you.
I’m doing my best to learn as much as I can about this, not just for me but because 2 of my children are also hypermobile and I definitely don’t want them to live a life of pain like I have.
Well, what exactly is hypermobility syndrome?
Hypermobility syndrome isn’t just about being bendy. It is a hereditary condition caused by a defect with the collagen in our bodies making it stretchy. So everything that contains collagen, including our organs and skin can be more stretchy than the average person’s.
Because hypermobility causes such a huge range of issues for people, we often get misdiagnosed and it can take years to finally get diagnosed. I didn’t get my diagnosis until I was 29, but when I did it was a real “aha!” moment. All the joint pain, the anxiety, the fatigue and stomach problems finally started making sense.
A diagnosis brought a great relief, relief that I wasn’t crazy or a hypochondriac; everything that I have complained about since childhood was real. Most importantly, a diagnosis meant that I wasn’t alone.
Symptoms of Hypermobility
So what are the symptoms? Well there’s tonnes of them and they affect people in different ways.
- Muscle Spasms
- Mast Cell Activation Syndrome (MCAS)
- Brain Fog
- Poor concentration
- Jaw pain
- IBS and digestive issues
- Flu like symptoms
- Sleep disorders
- Bladder problems
- High arched palates/ dental crowding
- Difficulty swallowing
- Vocal Fatigue
- Hearing problems
- Difficulties with pregnancies
- Loose/unstable joints
- Stretchy skin
- Fragile skin
- Anaesthetic resistance
- Postural Orthostatic Tachycardia Syndrome (POTS)
As you can see, there is a massive range of symptoms and this isn’t even all of them; it’s no wonder it’s so underdiagnosed. I will be going into detail of the symptoms in future blog posts, like my recent post on anxiety and hypermobility syndrome. Click here to read it.
Let me know in the comments which symptoms you deal with, or if there’s any that I’ve missed.
Is there a cure?
Unfortunately no, there isn’t a cure but there are things that you can do to help reduce the symptoms.
The most important thing that I would say is diet. Changing my diet brought me such relief.
I’ve experimented a lot to find a way of eating that suits me. This will be different for everyone and the best thing to do is an elimination diet. Strip it right down to basics and then slowly add different foods back and watch how your body reacts. This way you can find a way of eating that doesn’t cause issues for you.
For me I started off by trying the keto diet. The reduction in carbs, removal of sugar, gluten and seed oils made a huge difference to my symptoms. I still had to make more tweaks though and after removing nightshades, reducing my dairy intake and certain vegetables (surprisingly spinach was actually a big issue for me) things are definitely feeling better.
Before I changed my diet I felt like I couldn’t eat anything. Every meal caused stomach pains and bloating. I was extremely fatigued too. I would wake every day with a headache and suffered with regular migraines. These things have reduced since changing my diet but are still lurking in the background. I do still get flare ups, usually because I can’t resist eating something that my body doesn’t like; but these flare ups are no longer a daily occurrence and are very few and far between. I have actually only had 1 migraine in the last 6 months, so it’s a massive improvement. (Follow my Instagram page for examples of what I eat.)
The second important thing to do is exercise.
Us “bendies” need to build muscle strength to help hold our joints in place, which for most of us is easier said than done because our balance is off and we just don’t have the strength to do these exercises.
The majority of normal exercises I simply can’t do; simple things like shoulder rolls and lunges are completely out of the question and anything else that could cause my joints to hyperextend. Running is something I also avoid, partly because I look like Phoebe Buffay but also because I find it really hard on my joints.
I have personally found Pilates to be a great way to exercise. YouTube has some great videos for this; see below videos for some of my favourite channels. I also recommend checking out Jeannie Di Bon’s blog as it is full of useful information that is easy to understand.