4 keys to hypermobility pain management

I’m sorry to hear that you, or your child, are experiencing so much pain. Pain is a big problem for a lot of people with hypermobility conditions, so please know that you are not alone in this battle. People often approach me with questions about pain management, and this week has been no exception. So I thought it might be beneficial to make public my 4 keys to hypermobility pain management. While it’s impossible to go into enough detail in a blog post, perhaps it will be enough to get you thinking along the right track.

Now, let me preface this by saying: there are certain times, particularly in the lives of females with hypermobility that things can be particularly hard to manage. That’s commonly puberty, pregnancies and menopause (and for some monthly periods), and it’s all to do with hormones raging in our bodies. Boys with significant pre-pubertal hypermobility often suffer during puberty as well. However, most boys will end up better off once their hormones have kicked in, making them stronger and their joints more robust (that’s for most, not all).

Managing any type of pain can be extremely difficult. In many ways, hypermobility pain is much like any other form of chronic pain: it’s unrelenting, can be disruptive at the very least, and debilitating at it’s worst. The pain-beast in hypermobility is also different in a couple of ways. The first is that we often experience acute pain on top of chronic pain. There is the ongoing, behind the scenes, grumbling pain that is chronic, daily and “just there”. And then there is the acute pain from dislocations, subluxations, sprains, strains, migraines etc. This type of layering of pains can be described as “acute on chronic” pain.

The second difference is often the level of unpredictability of hypermobility related pain, making it all the more challenging to manage. We don’t always know when a dislocation is coming! Thanks to the increase in pain management understanding over the last few decades, there is more predictability than we realise, especially for the chronic pain, and often for the acute pain too. A lot of it comes down to tuning into our bodies, our cycles* (as women) and monitoring our mood and activities.

No two people with hypermobility will have the same pain management plan, which, by the way, should be decided upon with an appropriately trained medical or allied health professional/team. We all struggle with hypermobility in different ways, so it makes sense that we would manage it differently as well.

[bctt tweet="We all struggle with hypermobility in different ways, so it makes sense that we would manage it differently as well." username="hypermobilityco"] 

There are some core principles to managing pain, and some of these have become my 4 keys to hypermobility pain management.

1. Exercise/gentle movement 

Exercise should be undertaken with the guidance of a physiotherapist/physical therapist. As people with hypermobility, we can’t just start an activity, like going from the couch to walking on a treadmill for 30 minutes a day without any lead-up and preparation time. Our bodies don’t like that. We require planned & well thought-out exercises to build strength and endurance for movement before we jump headfirst into some new activity.

What happens if we don’t have the prep? We usually crash and burn. Our bodies break down (dislocations, subluxations, sprains, tendonitis etc.) because they’re not strong enough for what we just asked them to do. Our bodies need a LOT of preparation, the amount of which varies depending on the state of conditioning (or more accurately de-conditioning). This preparation time will be different for everyone and should be worked on individually with your physiotherapist (physical therapist, or perhaps an Exercise Physiologist).

Slow and steady wins this race. With hypermobility, we have to build slowly. Rushing into things only causes pain flares, relapses and disappointment. Sometimes slowly feels like too slowly, but it's important!

 [bctt tweet="Slow and steady wins this race. With hypermobility, we have to build slowly. Rushing into things only causes pain flares, relapses and disappointment." username="hypermobilityco"] 

For those who are struggling to get any movement into their days, often warm water is best. That is assuming you don’t have a chlorine allergy, which I’m finding isn’t rare in the EDS/LDS community. If you can get into a warm pool and do exercises, again under the guidance of your physiotherapist, then this is a great way to help manage pain.

Any kind of exercise requires the use of our next key!

2. Pacing of activities

Pacing is a skill. It’s something that we need to learn how to do because it’s a little counter-intuitive, to begin with at least. One of the most common issues people have with managing pain and fatigue is feeling like it’s unpredictable. With pacing, you will come to realise that not all types of hypermobility related pain is that unpredictable. I hear people say time and time again, “I had a burst of energy, so I decided to clean out the cupboards… I got almost to the end and then I subluxed my shoulder”…. or “I was feeling good, so I went for an extra long walk with friends, and now I can’t get off the couch”. These are problems of pacing and understanding how the pain cycle works.

In pain management, there is this thing called the BOOM-BUST cycle. You have a pain free period (boom) and do lots, get lots of things done, and then you hurt yourself either in the process or you wake up the next day extremely sore. So, you don’t do anything that day, staying on the couch watching Netflix and hoping the pain will pass. A few days (or weeks) like this pass by, and then your pain level is back to feeling "pretty good" again, so you think “well I missed doing XYZ, I should do them all today”… you do them, and then the next day you can’t move again. And the cycle continues. Boom (get things done) - Bust (can’t move, I busted my body).

Understanding this cycle in your own life is especially important. Managing it is something that needs to be learned and worked on so that pain levels don’t go from low to high to low to high all the time. If we can pace, then the pain levels will hopefully stay more manageable, and we won't decondition so severely during the currently prolonged bust phases.

At the most basic level, pacing means doing a little bit often, not all of it at once. It means setting yourself a time limit that is manageable, where you don’t think you’ll pay for it. It involves reading your body and predicting what it can and can’t do. Pacing at its core is being able to stop yourself BEFORE you get to “bust”.

 [bctt tweet="At the most basic level, pacing means doing a little bit often, not all of it at once." username="hypermobilityco"] 

There is a lot more to pacing than what I’ve just explained, which is why I’m planning to run a webinar/mini-eCourse (small fee) on this topic. We are now accepting expressions of interest, so if you’re keen, pop yourself on the waiting list, and you will be first to know about it!

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3. Psychologist intervention

NOT because anyone thinks the pain is in your head (well not in the crazy sense!) Your pain is very real, AND it is in your head, as in, your brain is what is processing the pain. Seeing a psychologist is helpful because the way we think about pain dramatically influences our experience of it.

A psychologist trained in pain management will be able to teach you a range of strategies to help you manage your pain. They can also help you deal with what I call the “chronic condition fallout”… the expressing and processing of emotions and restructuring of life that has to happen when you are diagnosed with a life-long condition.

Psychologists utilise a range of different therapeutic modalities to help with this including:

• Cognitive Behavioural Therapy (CBT)
• Behaviour Therapy
• Acceptance and Commitment Therapy (ACT)
• Mindfulness

4. Talking to your GP or specialists about appropriate pain medication is also important.

While I’m a big believer in using other modalities for coping with pain when possible, medications can most definitely play a role in your pain management plan. In my own life, there is a time and a place for painkillers, but they are not an everyday part of my life. Not because I don’t live with pain every day, but because I chose to try and manage without them after doing a pain management program. I’m neither for nor against my patients using them; each has their own story, history, injuries, illnesses and unique needs. My job is to simply educate people about other ways that can help minimise pain and perhaps decrease the need for the meds every now and then.

General pain management ideas that may be part of your individual pain management plan include: 

• Heat packs
• Ice packs
• Gentle massage
• Warm showers before bed
• Meditation/mindfulness
• Splinting/bracing/immobilising recently injured joints (for prescribed periods of time)
• Gentle exercise
• Distraction
• Self-soothing activities
• Essential Oils

*A note on female cycles: A lot of women with hypermobility report worsening of joint instability and pain symptoms around the time of their period/menstruation.

"Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is usually the time when the progesterone compounds exceed the stabilising oestrogen compounds.” Dr. Howard Bird, 2010 (Personal Correspondence)

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Have you got additional strategies that you use to help you manage pain? Share them with us, the more things in our toolboxes, the better!