The Ultimate Guide to Hypermobility and Massage

Written By City Girl

The tldr of this is massage is great for hypermobile people, especially if you're symptomatic, because it can ease pain, stiffness and allow you freedom of movement - stopping you feeling stuck. It can support recovery from any injuries brought about by your hypermobility, maybe by the impaired proprioception. And it helps to improve your proprioception by creating better feedback loops between parts of your body and your brain through touch. If you are looking for support to help you manage your symptoms - I can do that!

I was diagnosed over a decade ago with hypermobile Ehlers-danlos Syndrome and I've made it my mission to support people like me who want to engage more with life, but struggle to do so due to their chronic conditions. I do this through listening, targeted massage and general support and advice from my life experience coupled with research around these conditions. Please contact me or book in directly.

So, let's jump in to the subject of hypermobility. 

Jen Applesea is a Remedial Massage Therapist Focused on Hypermobility, Chronic Pain and Motherhood

What is Hypermobility?

Most people know it as being double jointed or being really flexible and often it's aspired to. Flexibility is one of those wellness goals that people focus on when they take up classes like yoga, ballet and pilates where there's a stretching element and they want to be able to bend their body into these beautiful positions. But flexibility and hypermobility are actually completely different things. 

Flexibility means that you have worked to increase your range of motion, and your body in itself is stable and does what you expect it to do when you move.

Hypermobility is different. Hypermobility is where you naturally have that extra range of motion. And it's because your ligaments and your tendons stretch more than they should. 

Hypermobility can fall into two types; symptomatic hypermobility and asymptomatic hypermobility.

Not all individuals with hypermobility will be in that symptomatic category or have any risk for any specific disorders related to their hypermobility. Asymptomatic hypermobility is all of the bend but none of the pain!

Jen was diagnosed with Hypermobile type Ehlers-Danlos Syndrome over a decade ago.

Symptomatic hypermobility is where things become a little bit more difficult for the individual with the condition. There are a number of different types of hypermobility disorders and I'm not a rheumatologist so I won't list them all here with their distinct symptoms. Generally though, symptomatic hypermobility disorders tend to be associated with chronic pain, joint instability and impaired proprioception (knowing where your body is in space).

Some of the disorders can also be related to dislocations and subluxations of joints and higher incidences of sprains and strains. There is research out there about links between hypermobility disorders and other full body system issues like anxiety, gastrointestinal issues, chronic fatigue, and even neurodiversity diagnoses. 

As with all of these things, hypermobility is a spectrum. Where you sit on the spectrum is determined by your genetics and you may or may not have any of the associated symptoms. Diagnosis of hypermobility syndromes and disorders is extremely challenging and if any of you reading have been through it, I sympathise completely.

It took me 17 years to get a diagnosis of hypermobile Ehlers-Danlos Syndrome. This involved multiple doctors trips and being told things like you're a hormonal teenager: “You just need to sleep more”; “you just need to exercise more”; “you're a woman, so this kind of pain is normal"

Hypermobility is a lifelong condition. There's no fixing it, but you can learn to manage it and you can regain some control over any symptoms you might have. 

“If you’re looking for medical support, Rheumatology is where you need to get referred. Please do reach out to me if you want to have a chat about how the process is going for you. I’ve been where you are and I know how difficult it is and how hard it is to advocate for yourself. ”

What can you do? 

My first advice would be to start slow. Depending on your symptoms and the severity of them you need to build up the amount that you do and make sure that you're taking rest days. People often think strength training is out of the question for hypermobile folk, but actually it's one of the most useful things that we can do. And this goes for all types of hypermobility, not just symptomatic. Asymptomatic hypermobility may not have the pain, but you still need to stabilise those joints and make sure that you're not overextending so that in later life you have a better quality of life and less stiffness. 

One quick thing about rest. Rest is not sitting down doing nothing and actually if you are considering that that is rest, you will find that you're more likely to end up with greater levels of pain, especially if you have hypermobility! Gentle movement, regularly, in a pain-free range is key to keeping you out of pain.

I'm not talking about getting up and going for a jog every 20 minutes, or doing strenuous exercise. I'm literally talking about making sure that when you're sat down, if you're watching a TV program and it's 45 minutes long - or it's longer than that, but it's got ad breaks every 20 minutes - when it finishes - or when you hit one of those ad breaks - you are getting up! You are going to the toilet or you are getting yourself a drink, or you are moving around and just gently sort of shaking and shifting your body, getting it warm again! 

I have so much more to say on rest but that is not for today. One last thing though. Linked to it is pacing, pacing and rest sort of go hand in hand. And if you've come across spoon theory, you probably know a little bit about pacing yourself. So eeking out your spoons to last you the day or the week..However, long you're measuring your energy levels for. 

Pacing doesn't work for everyone. I think the key to getting it to work is understanding what triggers exhaustion for you. For example, understanding what is making your body work harder. For some people like those with POTS, standing up can make your body work harder! Or getting dressed can make your body work harder, but sitting down to do things reduces that effort, so that's a way of reducing the output of energy.

Photography by Mayurgala

Once you figured out what triggers the exhaustion or what uses up the most energy, you can start to assign ‘spoons’ or points to your activities.

Then you can figure out how much you can do in a day before you use up all of your points/spoons. You can give yourself a number of spoons or points, say 10 per day, and then you can say cleaning my teeth takes me one whole spoon, but that's a thing I have to do today. Map out each of your activities. Figure out how many spoons you have. If you've got something special coming up, figure out how you can rest to conserve your spoons and it should hopefully help you regain a little bit of ability to do more stuff. 

Once you figured out the basics of your energy, you do want to add in exercise. Same as too much exercise can cause fatigue and problems, too little can as well. You just need to work out what your tolerance is for it. 

Strength training is key for people with hypermobility because you need a little bit of resistance to get those small muscles to fire and start stabilising your body.

It won't be the same kind of strength training as non-hypermobile people do. So if you're looking at programs to follow online, please make sure that they are given out by people who understand hypermobility. I can drop some links at the bottom here! 

Alongside pacing, resting properly and strength training (and all the other stuff you need to do!) self-care is really key for people with long-term chronic conditions. It's probably more key than it is for the average person, because it can make a huge difference to how you show up in your life. 

Pain can be one of our biggest challenges. When you live with constant pain you push it to the background and you don't really think about it or how it's affecting you day to day. However even if you're mentally ignoring it, the pain will still be there. It's a slow drain on your energy.  Masking it or doing things while you're in pain creates a faster drain on your energy, even just resting with it can be painful - even if that rest is simply sitting on the sofa. It's like having a large heavy box that you can never put down. It is always there, making it awkward and difficult to do the smallest most normal thing…And when it eases we can actually be surprised at how much more energy we have.

How Massage Benefits Hypermobility

Photography by Toa Heftiba

At a base level, kind nurturing touch with the correct pressure soothes and activates our parasympathetic nervous system - the nervous system that allows us to relax. 

As part of your massage, you have a consultation which is a space for you and your therapist to look at the full picture of you in a wholistic (get it? Whole + holistic 😅) sense. With massage like the type I practise - remedial or clinical massage - we look not just at the physical symptoms, which are a big part of what we go through, but we also look at the emotional side of things. We look at your support network. The challenges you're facing, the successes you have. It is a space to talk where your therapist will hear you. We're not counsellors but we use this info to build a picture of how you really are. That means that the treatment that we create uses this knowledge. It builds on it and it adapts to meet you where you are. It's never a set routine. 

For example, if you're in a pain flare, you're tired and nothing's helping you're feeling low and you're feeling like this will never change. Then, on top of this your shoulder is hurting and your sleep position is giving you headaches.. your therapist (or me in this case) considers this, and your treatment would switch from fixing the specific problem that you might come in with to soothing your nervous system to get you to properly relax.

Instead of going in with deep trigger points, we might come in with some heat, some broad sweeping strokes and spend some time activating that parasympathetic nervous system in tune with your breath to really promote relaxation. After that, when you're a bit more relaxed, we might do some of that deeper work but in a slower more controlled way with a lot of feedback. 

I can never promise to fix your pain, but by breaking the sympathetic nervous system loop of cortisol and stress, which causes inflammation and tension in your body, we can give your brain a chance to start to send different signals. 

As well as taking the stress levels down and stopping that cortisol response, we're also increasing your circulation so your blood is starting to do its waste disposal and nutrient dispersal job properly. Bringing you more of what you need and taking away what you don't. 

Another thing massage can do is work on your proprioception. I use a stretching technique called pnf where l take your limbs into a stretch, within what would be considered a “normal range” and then you resist me in that stretch. We hold it for 5 seconds until the muscle activates and then you take it into a further stretch and I get you to resist again. We repeat this three times per stretch and that resistance feedback teaches your body where your limbs are in space.

So in terms of self-care, remedial or clinical massage has a huge amount of benefits for people with hypermobility; we can help you manage your pain  - and some of your other symptoms. We can help you to relax and break your inflammation and cortisol response cycles and we can start to get your body activating its proprioception properly, helping you learn where your limbs are in space.

Our support is not just about the massage. As I said, diagnosis of a symptomatic hypermobility condition can take years and sometimes you don't feel listened to. Your therapist will listen and will not tell you that you are wrong - you are the expert in your body.

When your nervous system feels calmer and your body feels quieter, we'll look at maintaining that keeping you in that place where you feel like you can do more and achieve more of what you want to. Hopefully together, we'll set some goals and work towards them over time, and we'll celebrate your success in reaching them. Having been there myself, I'm 100% behind you cheering you on and wanting you to succeed. I'm here to listen and to understand and to ease out your pain and tension. 

Some useful links:

This article is part of our Wellness Budget campaign, sharing different ways that the City Girl Network audience can spend their money, time and energy on improving their health and wellbeing.

Friends Pass holders can get 15% off their first treatment with Applesea Therapies. Support this community and get the Applesea experience by buying your Friends Pass today at just 99p a month.

City Girl
Next

Theatre Review: The Winter’s Tale at Tobacco Factory Theatre