A Patient’s Response to Jason Parry’s Dislocation & Subluxation Management advice

Please note: The following text cannot and should not replace advice from the patient's healthcare professional(s). Any person who experiences symptoms or feels that something may be wrong should seek individual, professional help for evaluation and/or treatment. This information is for guidance only and is not intended to provide individual medical advice.

This article has been written by a patient and it should be taken as their own opinion not that of medical professionals. Self management is an important part of managing EDS and HSD but we always recommend discussing self management techniques with a medical professional first.

Introduction

I heard physiotherapist Jason Parry give his talk on dislocation/subluxation management in 2015, when I was in a really bad state.  I was dislocating or subluxing various joints, sometimes multiple times in a single day.  I would become extremely agitated every time it happened, and it had turned into an endless cycle of dislocating one joint after another.  Quite simply, it was controlling my life.

At the time I heard Jason talk I thought that his ideas on how to manage a dislocation or subluxation were great, but if I am honest, I thought there was no way that they would work in reality.  Who stays calm when their shoulder is literally hanging out of the socket?  I was wrong.

Fast forward three years to 2018, and I no longer even think about the steps that Jason suggested; I simply follow them instinctively.  I haven’t been admitted to A & E once since hearing Jason’s talk.  More importantly though, a dislocated joint no longer ruins weeks of my life, sometimes it can just take a few hours, which as I type, even I cannot believe the difference Jason’s advice has made

How did I get here?

After hearing Jason’s talk, I literally typed up the six steps: 1. Breathe, 2. Use painkillers, 3. Support the joint, 4. Try heat, 5. Distraction, and 6. Gentle massage.  Every time I dislocated I would look at the list and slowly work through the steps.

1. Breathe: My mum would keep reminding me to breathe, but what I found far more effective was listening to music.I created a playlist on Spotify of calm music that I would put on as soon as I dislocated.  By focusing on the music, I was able to slow down my breathing, which made me calmer and more able to deal with the situation.  The playlist is almost like a pause button for me – it takes me away from the chaos of the dislocation, the pain and the panic.  The more times I listened to the playlist, the more effective it became, as it reminded me of all the times I had successfully managed a dislocation previously.  I think one of the most difficult things to deal with when you dislocate, is being flooded with all the memories of how painful it has been, how difficult it was to manage and how much I missed out on as a result.  The playlist creates the opposite effect. It allows me to remember that it may only be hours of extreme discomfort, not weeks, and I will be able to cope.

2. Painkillers: painkillers for me have never actually killed the pain. They have simply made it easier to deal with. But when you dislocate or sublux a joint anything that makes it easier to deal with is extremely helpful.  I filled a pouch with every type of medication that I have, which meant I had everything to hand that I needed, and my family or friends could find it easily as well.  I decided in advance which painkillers I would take dependent on the level of pain I was experiencing.  So if my pain was 7/10 I would take one type of painkiller; if it was lower, I would take a painkiller that was less strong.  By deciding in advance, it meant I had simple instructions to follow and fewer decisions to make.  I have problems remembering when I am allowed another dose so I downloaded a medication app on my phone, in which I record the medication I have taken and set a reminder for the next dose.  The reminder comes in the form of Morgan Freeman’s voice telling me to take my medication, which makes me laugh, although can be embarrassing when it goes off while I am on the bus!  I have found that after two or three doses of painkillers I am normally a lot more comfortable, which again helps me to stay calm and believe that I will be able to deal with what has happened.  I then decide how much medication I need to continue taking when I am more comfortable and able to think more clearly.  My friend (who also has EDS) suggested taking painkillers before bed, even if I haven’t taken painkillers throughout the day, and I have found that this has meant I am able to sleep much better, which in turn means I am able to cope better the following day.  I also take painkillers if I wake up during the night in pain, which again improves the quality of my sleep.

3. Support the joint: The more I followed the steps, the more I learnt how to support each joint that I dislocated or subluxed.I have found that shoulders are much less painful if I am sitting in a supportive chair or sofa with a flat back, and a pillow under my elbow and forearm to support the weight of the arm.  This also makes traveling in a car (as a passenger) less painful for me.  For a dislocated foot, I need to prop the foot up, but also ensure that it is at a height that doesn’t mean I am increasing the pressure on my hips or knees.  The more I learnt the more I had to remember, so I decided to write down how to support each joint and any tips I had discovered relating to the recovery of the joint.  For instance, if I go for a short walk after dislocating my shoulder, I put my hand in a pocket, or hold my arm against my chest, so that I literally don’t swing the arm out while I walk!

4. Try heat: Even just the thought of a hot water bottle makes me smile! Heat is absolutely essential to how I cope with dislocations or subluxations; it reduces the pain and muscle spasms, is comforting and gives someone else (if you are not alone) something to do that means that they are not panicking alongside you.  If I am alone it is still one of the most important elements, but I often struggled to make a hot water bottle and didn’t find wheat bags were nearly as effective. So I bought the lightest kettle I could find. I also found a hot water bottle filling stand that made making hot water bottles far more stable and safe, as I only had to hold onto the kettle.  I use heat patches if I am out and always carry one with me.  Generally I have found that if I like the objects I am using to help me manage my EDS I feel much more positive so I try to spend time searching for things that Marie Kondo would say ‘spark joy’ for me.  When my Mum gave me a hot water bottle cover that she had knitted one Christmas with a heart on, it made hot water bottles even more comforting, and has since become a yearly tradition, which means a great deal to me, especially since the hot water bottle covers now feature a new animal each year!

5. Distraction: If I was in a really bad state I would stay in bed and listen to my playlist on Spotify, but as soon as I felt I could I would sit in a chair and watch a TV series.I would love to be able to read, but I simply can’t focus when I am in a lot of pain and films were too long and often too difficult to understand when feeling dazed.  TV series for me are perfect!  As I get to know the characters in a series I am able to immerse myself in their lives, which sometimes provides a much needed break from the reality of my own.  I keep a record of the TV series I am watching and the latest episode I have watched again in an app on my phone, so that I can simply choose from my list.  I have also learnt that I need to watch different series depending on the level of pain I am in. If it is a very bad dislocation I watch less demanding series than if I am just trying to rest, for example.  I would say that it is worth trying out lots of different ways to distract yourself until you find something that you love.  Frustration is a real issue for me when I dislocate, especially if I have to change any specific plans I have made, but having something that I can do, that I love, makes a massive difference.

6. Gentle massage: I have found massage with a spiky massage ball really helpful in reducing pain, and muscle spasms.It is also very effective at relocating joints, and making them feel more secure, especially in the days after a dislocation or subluxation.  Sometimes I did too much massage, so I now set a timer for five minutes on my phone and just do it in short bursts.  I bought a set of three spiky massage balls, which came in different sizes, and I carry the smallest around in my handbag in case I need to use it when I am out.

I would also add that trying to work out what may have caused a dislocation or subluxation has been extremely helpful in preventing future reoccurrences.  For example, I found I that my shoulders often dislocated when putting on my coat. By buying a coat with different sleeves, that was also looser, and being mindful of how many layers I was wearing underneath, I significantly reduced the number of shoulder dislocations I was experiencing.

Final thoughts

EDS can be a really cruel condition.  It is incredibly complex, affecting what sometimes feels like every single part of my body, and often one problem causes another and a downward spiral happens so quickly you can barely believe it.  What I didn’t know in 2015 was that small actions snowball, so by staying calm, I am able to make better decisions, which in turn means that my recovery is much faster.  By knowing what to do, just following the six steps, I am less confused and uncertain.  For me, over three years those small actions, have made such a significant impact on my daily life that I have started to feel hopeful about the future again, something which once seemed impossible.  I saw an image on Instagram the other day that said “Calm is a Superpower” and I try and remind myself of that phrase when things go wrong.  I think it acknowledges that staying calm isn’t easy, but can ultimately have more of an impact than you realise.  Jason’s suggestions for dislocation/subluxation management are not a cure, but they will absolutely make your life better.

Further reading

Jason Parry has provided an information sheet, with similar content to the talk which Sarah refers to in this article. It can be found on our website here.