Hypermobility: me and my patients

Over the years I have treated many people including young people, learning to live with chronic pain, because of their hypermobile bodies and accompanying syndromes, Ehlers-Danlos and Postural tachycardia syndrome (PoTS)

I attended a workshop with Jeannie Di Bon, (with Polestar UK), I had gone with the intension of being able to support my patients, however, I discovered while sat there listening to Jeannie, that the things she was saying also related to me!

Within this I further realised that managing my own needs to ensure I functioned well both physically and emotionally, has always been a priority.

Having owned my own hypermobility, I has started to become aware of the looseness from an age of about 11yrs

I became clear on how I have managed it, understanding my pitfalls, and understanding I have a strategy for myself.

I have shared this strategy with the people I treat and those who attend my Pilates classes.

My strategy falls into four groups:

The groups being:

  • movement
  • self-care
  • Check-Check
  • Carefully selected body work (selection being the therapist, do they understand. Do they know when enough is enough)

Movement:

I have always felt stronger and safer with movement.

Younger Sue used to do weightlifting, power training, which built strength and a feeling of safety. This gave me stability to run, cycle and swim, leading to taking part in a sprint triathlon.

Becoming a mother reduced my available time which meant I was left with walking and cycling. However, there was a growing sense of ‘instability’ growing in the joints.

I then found Polestar Pilates, the pre-Pilates movements gave me for the first time interoception proprioception and nociception.

I got to know my own body and began to love it.

Self-care:

I have had to learn this which has been quite a challenge.

Pilates is essential for my stability and strength, it also this includes eating foods that my body can digest. I have found I need a lot of protein and lots and lots of vegetables, fresh fruit. No processed food, low sugar foods.

I have also worked out that a fascial eases stress and tension, however a back massage is too much relaxation, my limbs feel like they are going to fall off my body.

I have also learned when it is good to create pause in my life which as a busy woman was not easy.

It has been useful to notice things and places that have impacted my ability to remain relaxed and calm, which, for want of a better word has ‘jangled’ my nervous system.

Taking a break from the practice every six or seven weeks, finding films and good company that creates laugh aloud moments, have all helped in this respect.

Self-check:

I have learned self-check as a hyper mobile person is beneficial. Sometimes we keep moving as we are worried that if we stopped, we might just collapse. We then would struggle to get back to that positive place. So being mindful and regularly self-checking for me is important.

Mindfulness, this I find quite difficult. Calmness and stillness for me comes from walking, noticing nature which when I am on my own can be relaxing and easing.

I created a system where I remind myself to ‘ check-check’ what I’m doing.

  1. Do I need to keep moving, what does it give me to keep moving?
  2. When moving, is my body feeling it may be doing too much, or just asking is this good for me?
  3. When enjoying Pilates, listening to my body, asking am I doing too much today.
  4. What would rest look like today?
  5. Am I talking too much?….sometimes this happens, I go on repeat and it becomes fatiguing

Choosing the right therapy:

I always tune in to my intuition, asking does the therapist understand that my system can overreact to their treatment.

I always need to ensure that anyone who is going to treat me, share with me their protocol before doing anything. Within my practice I always encourage open honest feedback on the treatment I have provided.

I share the above strategies with people in my treatment room and also take this into my Pilates classes asking:

  • Does this feel useful?
  • Just because we can it does not mean we should
  • Can we feel the movement, with clear description of where they might be feeling any response.
  • Lots of visualizations
  • Inviting clients to feel the length and breadth of a movement, but where they can still feel in control/safe.
  • Exploring what does letting go feel like. What does this even mean
  • The next step is to ask what stops us from seeing and feeling, what is good, helpful, and supportive for our own bodies.

We need to know when things are too much, exploring what does their mind-body tell them when it is enough.

Helping clients to find their strategies is very fulfilling, then working out a treatment plan which could include listening to the body’s rhythm, through the soft tissue mobilisation of the Hendrickson Method treating fibrous tissues and fascia. Then noticing when the rhythm in the tissue changes, knowing when is enough, then lifting the hands off, having an understanding to move at their pace. Sometimes just holding a person with intention is enough. On occasions it is better to under treat rather than push through in a particular moment.

I find making a video for them to use at home is especially useful. It gives them chance to embed the work we have done together at home still hearing my voice.

Each patient is unique, finding strategies which they can understand and find useful is a challenge but is extremely rewarding when you see the patient becoming confident in their new path feeling safer in their own body.

 

Creating space: Mental Health Awareness Week

“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and freedom.” —Viktor Frankl

This quote appeared in Brene Brown’s feeds this week and it got me thinking, along with the stories I’ve been seeing around Mental Health Awareness week. 

In the Flexible Healing clinic, we see a lot of patients who are dealing with long-term pain. Of course, as a physio I get stuck in and start working around the physical problem. But I’ve found it helps to discuss a mental coaching step with them too.

For all of us, long-term pain can be really, really hard. You can feel lonely with it. The consistency of it can feel too much, making you think you can’t cope.  

When I encounter people with long term pain, I ask – what do you do when the pain comes? What is your first instinct?

It’s a tough question. Because for all of us, the instinctive response is to feel distress and fear. “What do you mean, what do I do?” they say. It seems a silly question – there is nothing to do but experience the pain, surely?

I then ask: next time this happens, can you create space instead?

As Frankl says, between stimulus and response there is space. And sometimes we forget that when the stimulus is simply too consuming. So I ask: “Can you create space for yourself? To choose how you’re going to respond, and not respond from a place of complete fear?”

In this space there exists a certain kind of freedom, where you can choose to move away from the distress and fear and instead experience something else. 

I’m not saying this is easy. I know it’s hard. I had the good fortune to be told about this and started to practice it in my own life through NLP training.

A way to start is to ask yourself when you pause in that space: what would help me right now? Would a shower change your state? A walk outside? Think about what works for you, and if all else fails, try something research tells us helps. In Deb Dana’s book The Polyvagal Nerve in Therapy, she explains how it’s been proven that something as simple as looking at moving water has a proven calming effect on the nervous system.

Find whatever works for you to break state.

Then I advise patients to check, check, before they make a decision based on how they’re feeling when the pain rears. Is this your decision, or the pain’s? Can I wait to make it until I’m feeling better?

Sometimes when the practice is overwhelming, therapists need to do this too. So it’s not just for patients; I tell every therapist I teach in workshops to check check too!

Whilst I’m not trying to say it’s a choice to have fear or distress when it comes to pain or mental health, I believe that we have the power to claim back space from the difficulties we experience. 

Whether you’re a patient in long-term pain or a therapist with a busy workload, I hope and believe this can help you on your way through our crazy little world.

Happy Mental Health Awareness Week – Sue.

Why use METs and how to make them your own

When I first came across METs I was studying for my Higher Diploma from the Northern institute of Massage; it was an essential requirement to learn this technique. As therapists gathered round to watch demo after demo, I, being a questioner (see Gretchen Rubin, The Four Tendencies), was soon asking “how come”,  “isn’t that a big movement” and  “will these moves be too much for older patients?” But I didn’t feel heard. I found myself not  comprehending how I would incorporate this into my treatment room, especially when reflecting on the type of patients I was treating (in 2000). 

I bought Leon Chaitow’s book to aid understanding, and mindfully began to introduce the technique into my treatment room. Within METs, there are big physical moves that involve a more global movement within the body. I felt the smaller ones i.e., scalene, infraspinatus, would be useful. I quickly started to make the resistance feather like, and experimented with a longer pause in between each contraction. This led me to ending up parking METs for a while as I explored positional release, which felt gentler and more suited to working with long term pain. This also applied to overly sensitive patients, especially those with overly sensitive neurological systems, due to trauma or assault. 

It wouldn’t be for another 6 years that I would re-examine METs. 

There is a lot of debate in literature about how MET works. Some focus on the Golgi tendon organs, whereas some authors focus on the muscle spindle. It is best to have a clear understanding of the essential neurologic role of the muscle spindle.

MET works the conscious, voluntary contraction of isolated muscles. Creating an isolated voluntary contraction is different from the muscle contraction we use in everyday life. The higher brain centres work to isolate muscle contraction, causing a unique neurologic effect, compared to those accomplished in everyday functional activities.

John Gibbon in his book Muscle Energy Techniques breaks it down as:

  • Muscle spindles are sensitive to change in length and speed of change in muscle fibres.
  • Golgi tendon organs (GTOs) detect prolonged change in tension.

In order to really understand this however, I found it was going back my knowledge of anatomy which began to connect the dots. Whilst attending Gary Carter’s Anatomy for Movement Teachers, based on his experience with Julian Baker, he would argue, how do we know?

Often textbooks on Mets never show the people that walk into my treatment room.

They are people who

  • Are often afraid of their pain
  • Are disconnected from their body 
  • Do not feel when muscles contract 
  • Do not believe there are muscles where we say they are
  • Are afraid to move
  • Have become physically and emotionally fragile 
  • Were struggling to be seen and heard with their injury and pain

These people can have painful memories stored within the tissues. When we refer to ‘muscle memory’, we have to remember it goes both ways. It can be a positive experience relating to skill learning – or it can be a negative experience in which the body learns to react a certain way due to trauma (for more on this, see The Body Keeps the Score).  

We must be prepared for the potential release that will follow when working with them. Sensations and feelings can occur in other parts of the body, again, due to the trauma the patient may have experienced. It is at this point we may be required to verbally check in.

Sometimes we can question whether we are really within our scope of practice. We may not be qualified counsellors or coaches. So how can we help when physical pain reveals and raises past traumas?

At the very least, we can do something they might not yet have encountered. We can listen. We can create a situation where maybe for the first time they feel heard, even seen, for the first time. This can be enough for some people or, if you feel necessary, point them in the direction of a good therapist. At the end of the day, it is their choice.

I’ve developed this approach through a number of avenues; from my years as a social worker to NLP training. But it was brought together in 2006 when I went out to San Francisco to train with Dr Tom Hendrickson. Tom Hendrickson had integrated METs into his wave and soft tissue mobilizations as part of his treatment protocol. On the other side of the world, I came back to a technique I’d previously put to one side, and I found space to take the technique apart and gain a deeper understanding. Training with Tom supported my thoughts of making sure the patient understood why this technique was going to be useful.

Here are the ways I have made the technique work for me.

  • Create feather like contractions
  • Make sure they are really pain free before working
  • Check which other muscles they are they recruiting instead 
  • Create imagery, descriptions of the muscle you want them to connect with
  • Enable them to re-create the movement that a particular muscle may make by supporting them with a passive movement

I have found patients enjoy collaborating with me towards their recovery/reconnection. At times they are surprised by the pain free range we are creating together. Then I find if I couple this with pre-Pilates movements to embed the work we have done as homework/rehab, we have formed lasting change within their body, creating pain free functional movement

I have grown to love Muscle Energy Technique, on my personal terms as a therapist that makes it work for the people in my clinic, adapting the moves to suit them and where their bodies are at. 

Patience and practice go together

Patience can be hard in a world where most of our needs are met in an instance, or the next day.

If we want to know something, it’s just on the other end of a Google search.

With all the various forms of communication, WhatsApp, texting, social media we expect instant answers. If we do not get one, we are surprised, even feeling let down if it does not happen.

I believe we have lost touch with and forgotten that it’s fine to wait. We’ve even forgotten the positives: the wonder of anticipation, the reward of patience.

All this leads me into thinking about rehab with patients. How we have to manage their expectations, their commitment and their understanding that the process takes time and repetition to create change.

Often when people attend the clinic for treatment, they will ask would exercises help?  I will more often than not say “Yes, they will help, they will support the work we are doing here together and they will support your recovery towards wellness.”

But then the next thing I say is “do you think you will do them? I will not give you them until I know you are all in committed to the time each day. There is no point if not. I’d love to discuss what might stop you making that commitment to yourself.”

At times they look a little shocked and surprised at our directness.

What might they answer when we ask what stops you from taking 1 5 mins to yourself?

  • I can’t find space when time with family is already limited
  • I feel guilty
  • I’m too tired to stake my claim
  • I come last

    We then explore the words they need to say “this is my time to value my health and wellbeing”.

We will often rehearse finding time, starting with addressing their needs to their loved ones. Nothing will change until they find their reasons why.

We go on to discuss how this is going to take practice, practice, practice. Often quoting the Norman Doidge’s book, The Brain That Changes Itself, where he shows evidence through collective research that change can take place through a mixture of positive thinking, determination, and physical movement, be it Pilates, yoga, prescribed movements. The forgotten aspect of this is that the brain needs it on repeat before hearing the message that change can take place.

Practice is something I have done since meeting Pilates and Claire Sparrow my Pilates mentor. I have never felt as connected to my body and as stable as I feel at this moment in time.

I’ve recently discovered I have a hypermobility syndrome, and always have apparently. I am by nature a resilient old soul, with an enquiring mind, that asks how I can support myself to do the work that feels like my life purpose. This means I practice my Pilates, that gives me my stability and moments of mindfulness. That’s the time I make for myself so I can help others – but I had to practice to get there.

So can you give practice ago this 2022?

 

Why I Love Treating Long Term Pain and How to Solve It

So you’ve probably experienced this before.

When you’re working with someone and you just can’t clear that long standing hip pain, back pain headaches and jaw pain.

When you have done the testing and assessing, and you still can’t find just what is causing the problem.

When the pain is moving around the body.

When the patient in front of you has tried physio, acupuncture, multi-body work techniques and they have heard you’re good so they’re giving you a try.

We want to help – and then question – can we? Should we choose as therapist’s to take these people on?

Here’s my confession. I love treating these patients. I love thinking how can I help, what did all these other practitioners miss. Did you ever watch the medical programme House? Think of yourself like Dr Gregory House, M.D., an elite diagnostician with a puzzle to unravel – without the drug habit, terrible bed side manner and limp, preferably.

Let’s start with my checklist – often people have missed asking these questions (some of which are clearly gender dependent).

  • Do you have children? How was childbirth?
  • What sport did you play as a child?
  • Were you ever involved in a road traffic accident?
  • Have you ever been physically assaulted as a child/adult?
  • Have you ever been bullied? As a child or adult?
  • Have you ever fallen out of tree, off a rock climbing or at pony club?
  • Have you ever felt so stressed you have needed time off work, or an extended holiday?
  • Have you ever been so frightened or fearful that you might not survive the moment you’re in?
  • Do you have any scars? From childhood or surgeries?

These questions in my experience have not always been asked. And that’s because they’re quite intense. They take a lot to ask, for the practitioner and the patient. But often they’re the only way get to the root cause of someone’s pain.

It’s all down to whether you are willing as a therapist to hear the whole story, and be open to hearing the whole story of their body. Be open with no judgment, offering curious compassion.

All these incidents I’ve listed can cause, if unaddressed, tension and compression throughout the body, often accumulating in the mid body/abdominals.

People find ways to unconsciously compensate. It usually involves at lot of holding themselves with tension, at an unconscious level. Here’s how things develop over time.

  • Foot pain > altered gait
  • Altered gait > lumber pain
  • Unexplained knee pain > disruption in the pelvis
  • Kyphotic posture with a forward head > digestive issues, tight breathing, holding breath.
  • Tightness or holding in the TMJ (jaw) > headaches and shoulder pain.

When patients have suffered trauma in the past, it creates a false baseline for the nervous system. Whilst the patient might have developed a mental resilience which can make them forget the extent of their trauma, this isn’t reflected in the body. The body instead is more sensitive to future pain and future trauma, as it’s on a constant high alert – the signals being received by this new trauma are interpreted at a more extreme level.

This is something I have seen time and time again in my practice, and has been explained further by research completed by the Noigroup. If you’re interested more in this, I recommend the book Explain Pain.

This is why it’s so important to understand the patient’s history and know where their baseline is at.

Here’s a good place to start.

  • Ask them what would be a good outcome for them?
  • Ask them what be a great outcome for them?

This means you can work toward a small improvement on their way to their idea of wellness. Sometimes in the beginning small changes, indicate that greater changes can come.

I explain to the patient what will happen once the whole story is told. Here’s what I think should be said next, based on my experience.

  • We’re going to work through small steps so we don’t set up a fear response in the nervous system
  • Would reducing the pain be a good outcome? Even though I may not be able to change the soft tissue injury
  • I’m going to make the treatment as pain free as possible so it doesn’t pose a threat to your nervous system
  • You’ll be in charge of overseeing your recovery
  • Are you ready to take on small movements at home to support your recovery?

I always start with holding the feet, and slowly moving on from there I create a protocol that is just for them which could contain any or all of the below.

All from a supine position:

  • Holding the feet first allows the nervous system to feel input that isn’t a threat
  • Use HM soft tissue mobilisations for calfs, hamstring, and quads
  • Abdominal massage, NIM style
  • HM soft tissue for neck and jaw

I find this begins to calm the nervous system. Remember that them being open to the plan changing as change begins to take place is key. Work with the confidence that your knowledge and learning will back up what you intuitively find and help the patient feel safe in your hands.