Over many years I have been lucky enough to work with many amazing people, from those with Fibromyalgia to those with various neurological problems. But, out of all the people that walk through my door with a fibromyalgia only diagnosis, I would say around 50%-60% actually turn out to be on the Hypermobility spectrum or have Ehler-danlos syndrome. Now for those folks with hyper lax tissue, life can become very difficult, very fast. With the change in collagen that the gene mutation in those with hypermobilty causes, and the fact that collagen is a hugely abundant and incredibly important tissue in the body, it brings about a lot of systemic problems. I’ve seen a lot of hypermobile folk in my career and I’ve seen some pretty amazing results that hard work, determination and a little consistency can bring about. Some of them even made the press like Kriss, Lauren and Lisa.
Hypermobility is a common co-symptom to many invisible illnesses such as Fibromyalgia and Ehlers-Danlos syndrome. I have been very fortunate in my time to work with a huge amount of amazing people, from those who have had no other problems apart from rare subluxes, to individuals with severely reduced gut motility, mast cell activation disorder (MCAD), Postural Orthostatic Tachycardia Syndrome (POTS) and regular dislocations of multiple joints. It’s important to note that in sources such as the media when people report that they dislocate regularly, generally speaking, they actually mean they sublux, as full dislocations are not as common. Although, with that being said, unfortunately, there are some out there who do dislocate regularly, those who can dislocate toes whilst taking their shoes off, to those who could dislocate their hips whilst they slept. The degree of hypermobility can range massively between sufferers and conditions like Ehlers-Danlos Syndrome can cover a very large spectrum. This can make individual treatment very difficult as what may work for one, may not be of any use or indeed be dangerous for another. This becomes especially apparent when you factor in things like vascular EDS. However, a lot of sufferers tend to gather around the mean, so I am hoping this guide can aid to help a lot.
It’s time for a change (Not just you, but me)
For a long time, I’ve found it hard to write the kind of blog you are about to read, as seldom are they received well. If all those years ago I had read what I’m about to read, I would have been truly pissed!
I remember when I was in pain, I just wanted a cause, just one thing to blame all my problems on. After searching every where I eventually got what I thought wanted.
*A physiotherapist told me it was all related to my posture. Keep in mind that I had always had terrible posture long before I had pain. I got a few corrective exercises and I went on my way. 4 months of religiously following the exercises and I saw no change!
*A GP told me it was depression that was causing my pain, so I was referred to counselling. I even went privately to see if that would be better. Keep in mind I have always been a cheerful fellow despite how bad things get. Months later, I still had no change in pain.
*An Osteopath told me my lymph wasn’t draining properly and I needed 2 sessions a week feel better. Keep in mind movement moves lymphatic waste and I was still moving tonnes! 2 blocks of sessions later, no change in pain.
*A Pilates instructor told me my core was “weak” and that was the cause of all my pain. Keep in mind, despite being in horrific pain, I was still free squatting 95kg. Many sessions later, no change in pain.
*Another GP told me it was PTSD that was causing everything, I nearly punched him in the face! I went to CBT and other things, still no change.
*A Chiropractor told me I was out of “alignment”, one of my legs was shorter than the other because of my hips. This meant that when I walked I was getting the shearing force in my SI joint causing me terrible back pain. Keep in mind that even on the high street, parts of it are uneven and unless we have been walking on a perfect, scientifically flat surface, designed with the most precise measurement tools, what does it even matter.
*Another Chiropractor told me it was because of scar tissue after the tank I stood in front of exploded. You know what, this made a lot of sense and I handed my money right over. I did get some relief this time and with the help of a lot of tramadols, perhaps a little more than I was supposed to be taking, I was semi functional during the day. However, after a few months, any relief I need get just disappeared and just wouldn’t come back, no matter how much money I paid him.
This is, thankfully, where my life changed. The chiropractor I had been seeing was cut from a different cloth and did something I had never had to happen to me before. He told me that if I kept coming I would be wasting my money. That he was sorry he could not help and that he wished me all the luck in the world that I’d find something that did. This guy had something that none of my other health professionals didn’t, a lack of ego and more importantly; he had integrity. This is what lead me to create my programme, the one that helped me. I realised that every person I had seen had given me another thinking to worry about. Something else to focus on until I was a mess, even more so than when I first started. And one day I was reading a book and in it was the definition of health by the world health organization.
The World Health Organization (WHO) defines health in its broader sense in its 1948 constitution as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.”
It is at this moment (and one a few months later watching my daughter play with a toy) that I realised something huge. Complex problems don’t have simple answers. Every person who comes to see me is a metaphorical pie chart. Some have a bigger slice of physical factors, some have a small slice of psychological factors and some have social factors that influence how they feel day to day. But, everyone who walks in has all three. This definition has been around since 1948 I had just never really noticed and instead went to every guru who was more than willing to take my money for the newest fad treatment.
The chiropractor who was so kind to me, well he changed more than I think he realised. I still to this day use his gift of freedom in releasing me from the guru trap, with my clients. Don’t get me wrong, I have clients who I have had for years, but they stay because they enjoy the sessions. But, I make it very clear now that my intention is to get them in, educate them in what I did for myself, give them the tools to maintain results and let them go back to the world more confident and to get on with their lives. Able to rely on themselves, clients often stay for longer than the standard few weeks. Some feel ready after 6, some prefer to get strong and leave when they feel ready. Ultimately as long as people get a better standard of living, I am happy.
I have spent years with youtube blogs and videos not being able to write like I wanted to, as it was so badly received by people as it was not what they wanted to hear (I felt the same way). I am guilty of using phrases like “to release muscle” as it was what people were used to and accepted. However, my motivation behind using these has always been hidden. Take the QL release video on youtube, you can not release muscle, it just doesn’t happen. I mean I could with a knife but it won’t be pleasant and will more than likely go to jail! But, by pinning the QL with the ball like in the video, it works more on a neuromodulation effect. People do it in their homes where they feel safe, surrounded by people they trust. and after 50 seconds the pain decreases and they stand up and feel instantly “looser” which allows them to feel better when moving it stops people guarding them selves and creates the good movement which makes people feel better.
I have spent the last few years working with clients 1;1, conducted countless workshops and consultations. I am very happy with the process I take clients through and the educational aspect of the programme and how I explain things. However, putting that into writing, into something that someone doesn’t simply reject because they do not want to believe it, is a hard task. So from now on, lets cut the bull shit!
I feel that now, with the results people have made with myself that it speaks for its self and that I don’t need to say things and have a different reason for doing it hidden in the background. So from now on, lets cut the bull shit. You open your mind and think differently and realise feeling better isn’t a simple solution and isn’t solely physical. And I will write it how it is. I won’t sugar coat it to write it in a way you are happy with. If you do the same things, you get the same results.
Before we go any further there are a few things which we need to discuss, things which stop people before they even start! There are going to be a lot of things in this guide that totally contradicts everything you have been doing, what you know and what you have been told. If you are stuck in the thoughts that strengthening your core directly helps your hypermobility or that posture is something you change from the outside you aren’t going to like this.
Pain and its bad rep
Through cultural conditioning, pain has gotten a bit of a bad rep. We associate pain as something that is inherently bad and whilst it may destroy many lives and cause a great deal of distress, it still remains an important part of the human experience. Pain is incredibly complex and we will never truly understand it in its entirety, at least not until we can fully explain consciousness. When it comes to pain it’s important to remember that a sizable percentage is based on perception. Pain is quite simply there to alert us to damage and more importantly, potential damage. Ultimately your body has one job to do; keep you alive to pass on your genetic information. Your body does not care if you have an important engagement to attend, if you have work to go to or that the weather is nice and the kids want to go to the beach! Generally speaking in cases of chronic pain and hypermobility there is always a method to the bodies madness.
If you are walking down the high street and your brain feels it is not getting enough oxygen then it won’t hesitate to render you unconscious to get your head and heart level with the floor, making it easier to get oxygen rich blood to the brain. Think of this like in the case of Postural Orthostatic Tachycardia Syndrome (POTS). If you get a paper cut on your finger, the brain won’t think twice about creating pain, making you more conscious of where you are putting that open and prone to infection wound. After all, we use our hands a lot! Have you noticed that when you finally realise your finger doesn’t hurt, it’s still healing? Surely, if pain= only damage, then your finger would hurt until it fully healed.
If you get a paper cut on your finger, the brain won’t think twice about creating pain, making you more conscious of where you are putting that open and prone to infection wound. After all, we use our hands a lot! Have you noticed that when you finally realise your finger doesn’t hurt, it’s still healing? Surely, if pain= only damage, then your finger would hurt until it fully healed.
Thinking of pain as an alarm system will help you move out of the old “pain=only damage” mentality and help you better understand why we experience it. It’s important to remember that things like degeneration, posture, leg length differences and posture are very poorly linked to pain. I have met a lot of people, some of them had horrific posture and were in terrible pain, some of them had terrible posture and had no pain at all. I’ve met people with an abundance of tissue damage who experienced no pain at all and I’ve met people with no tissue damage, who were in terrible pain. There are many studies out there which have helped us to move on from the old way of thinking about pain and to help us understand that there are many other factors at play in pain from social, physical and not to mention physical or biological ones. One interesting study by Finan et al (2013) found that of 113 people with severe arthritis reported having low pain and those with mild arthritis reported having high pain.
Oh boy, how this topic has caused so much unnecessary panic and probably caused a lot of people pain! Posture gets really over emphasised by a lot of therapists, and this can be incredibly costly to someone in pain. Trust me, I spent thousands over the years, on pretty much every modality going! Being in pain is expensive. The cold hard truth is there really isn’t a “perfect” posture. I spent many an hour when having to do ceremonial duties in the household cavalry, sat on a horse, sat up straight in perfect posture. I’ll let you in on a secret; it was incredibly painful!!! We are a species that are designed to move, we have certain systems in the body which rely on us moving, like the lymphatic system. I have met people with truly god awful “posture” they looked just like the classic upper cross syndrome (UCS) poster child, yet they had no pain. I’ve also seen the exact same posture in people who were in terrible pain. I have helped people “correct” this and they have had instant pain relief. I have also helped people “correct” this and it had absolutely no effect on the pain they were in. Complex problems seldom have simple answers.
Instead of focusing all your energy on how you think you should be sitting, just move. For the next 7 days while you watch television, sit on the floor. You will be amazing at how many times you change positions automatically in a 30 minute period. You can’t do that reclined in a chair.
There is a huge difference between posture and prolonged strain. Staying in one position for extended periods of time can be a real big problem! (for some). Staying in one position, say whilst at a computer for several hours at work, may be a factor in your pain. However, you may find that other people at work do exactly the same and are completely fine and have no pain. Remeber perception plays a big part in pain. If you do feel that prolong straining causes you pain, simply making some changes to your work station and daily habits may be all that you need to do. Go for a walk on your lunch break, take regular breaks to stand up and move about. Writing about posture has indeed helped people ( I still have the emails) but it’s not for the reason people think.
The problems started when we named it
Hypermobility is a terrible name that doesn’t really help anyone. A few years ago it was even worse, we had people being diagnosed with being hypermobility syndrome. Placing “benign” in front of it trivialises the condition and has lead to a lot of problems for sufferers getting the help they needed or indeed, even being believed. The Collins dictionary defines hypermobility as “an extension of the joints beyond normal capacity” leading people to believe that you have long, loose muscles and are very flexible because of that. It is the laxity of the joint ligaments that allows excessive motion, which is why I much prefer the term Hyperlaxity.
With a few myths busted and a different way of looking at things, I feel this is the perfect place to stop before we completely hammer down the core training importance in Hypermobility and start to implement some real changes in Part 2!
Until then my friends
Gentle hugs x