Cyclist’s Dystonia - A Case Study
Chris came to see me last year, battling with asymmetry and having tried solving the issue with multiple other bike fitters. We started with a phone consultation where I explained that asymmetry and feeling twisted is a problem that many cyclists face. On the day of the appointment she opened by saying that the problem only becomes obvious after 4 hours of cycling. It was midday so I joked “ well we have 4 hours lets get you pedalling”.
This issue did not take 4 hours to come about. In fact it was the most extreme biomechanics I have witnessed yet to Chris - it was entirely normal. We spent 5 hours adjusting and testing various things but it was clearly something beyond bike fitting adjustments. The following post was something I asked Chris to write when she felt like she was optimistic about her progress and I am elated that she’s put together this fantastic piece. ( Can be read on her blog site too https://cyclingdystonia.wordpress.com/2024/11/27/cyclists-dystonia-a-cruel-and-unusual-condition/ )
Cyclist’s Dystonia – A Cruel and Unusual Condition
For the last few years I have been dealing with a condition called cyclist’s dystonia. You probably haven’t heard of the term dystonia, but you may be familiar with ‘the yips’, the name that high profile golfers and snooker players use to describe the same problem. Cyclist’s dystonia (and the yips) are conditions that come under the wonderfully descriptive definition of ‘Task Specific Focal Dystonias’ or TSFD.
Dystonia is a broad term that refers to a disruption in the signalling between the brain and the muscles. Focal dystonia means that it only affects one body area. And ‘task specific’, as you would probably guess, means that the problem only occurs when performing one specific action, like playing golf, running, or very rarely, cycling.
Athletes get TSFD and so do musicians. It is generally idiopathic, meaning that there is no detectable physical cause. But there are common factors that provide some good understanding into what is going on. It usually affects people who are in their 40s or older and it almost always only hits people who perform one particular activity a lot. So it is usually long distance runners, serious golfers or professional musicians who develop it. It very commonly occurs after some sort of injury, although it is particularly likely to happen to people who have some sort of underlying ‘poor form’ issue, caused, for example, by a limb length discrepancy or a faulty joint.
The condition is rare and since the term dystonia is so broad, there is almost no robust research of any scale into TSFD. But having scoured hundreds of articles and small research studies about the subject, and having met with probably the best known expert on the subject, Dr Farias, who set up the Dystonia Clinic in Toronto, it appears that TSFD typically follows a fairly straightforward trajectory. A person – let’s say a runner – has been running for many years, typically covering many miles a week or a few thousand miles a year, performing the same movement, using the same sequence of muscles contracting and relaxing over and over. Injury is almost inevitable at some point, and when this happens the body does what it is designed to do – it finds ways of compensating and moving differently in order to protect the injured bit. But as an endurance athlete, the runner is used to getting injured, and so fairly quickly she is able to resume her training. She probably doesn’t even notice that there might be some slight modification to the way that she is moving. So she carries on running with a slightly altered gait, and over time her brain adjusts to read this new pattern of movement as normal. Our brains are very adaptable in this way. She carries on running in this altered way for quite some time without too much of a problem but without realising the subtle stress that is being placed on her body because she is asking muscles and supporting tissues to perform in a way that they weren’t designed for. Eventually, over time, it becomes apparent that her movement pattern has become dysfunctional – inefficient, often clumsy or uncoordinated and sometimes painful as overworked muscles spasm in protest and other muscles weaken through lack of use. It is usually at this point that the problem, if it is given a name, is called TSFD. Exactly why some people get it and others don’t isn’t known, although it is likely that underlying ‘poor form’, that has always been there, is a potential factor. Or it may just be genetics.
Cycling was a passion that started early
Either way, this is what happened to me. Back in 2021, I had been a cyclist for over 50 years. For decades I had cycled alongside my running, but when I developed knee issues in my early 50s I switched almost exclusively to the bike, competing as a time triallist, cycling long distances for fun and riding my Brompton to and from meetings for work. And I was ok at it. I set national age category records at all the distances I raced. In 2021 I cycled Lands End to John O Groats on my own and found it easy. Then in autumn 2021, I hurt my left sacroiliac joint in my lower back mountain biking. Although it didn’t hurt while I was road biking, it was excruciatingly painful when I sat down or did everyday tasks like straightening up. Over the year which followed I had a ton of physio (with an excellent physiotherapist), I saw chiropractors, osteopaths and acupuncturists. In August 2022 I had a steroid injection in the joint, and bit by bit the pain stopped. By autumn 2022, I was almost back to ‘normal’ although my back was noticeably stiffer than before.
Setting my first national veterans time trial record in 2016
It was around this time that I also started to notice that I wasn’t cycling as well as I used to. I assumed this was just training issues after the injury so I changed my training regime. But I got worse rather than better. I started to notice that my left leg wasn’t cycling as strongly as my right one. On hill climbs in particular (something that I had always really enjoyed) I started to notice that the weakness in my left leg was throwing me off balance. Over time, as the problem got worse, my left foot started to move up and down and from side to side far more than it should. I started to call it my ‘floppy foot’. Needless to say, if the problem had manifested itself off the bike I would almost certainly have been more worried, but it didn’t. I could run occasionally (limited only by my dodgy knee); I was regularly hiking for 15 miles or more; and at the gym I could use the stair stepper or the rower without any problem. In every other situation, my left foot and leg behaved perfectly normally. So I assumed that the issue had to be something specific to do with cycling. I saw three bike fitters. The third fitter I saw was extremely thorough and diligent. He tried every possible way of adjusting my bike fit to accommodate my compromised movement, but he ultimately concluded that it wasn’t the fit, it was the way that I was moving that was the problem. This was January 2024, and by this time, as I turned the pedals, my left foot was almost vertical to the ground at the top of the stroke and my ankle was locking out at a strange angle because the forces that I was putting through it were so unnatural. I was also twisting and shifting over to the right on the saddle, making it even more difficult for the left leg to move through a normal circular motion. The bike fitter was able to describe what he could see, but I wasn’t able to feel what was going on. By this time, to my brain, this pattern of movement had become normal, even though it clearly didn’t work!
The start of 2024 was a low point for me. I knew something was very wrong with my cycling, but I really didn’t know what and none of the specialists I was seeing were able to account for what was going on. It was whilst I was obsessively googling all of my symptoms that I came across an article about runner’s dystonia and I followed the trail, through various research articles and pieces, to the Dystonia Clinic in Toronto.
TSFD in many ways is a cruel condition. It almost only ever affects people when they are doing the thing that they love the most, or the thing that they are best at. There are no tests that can confirm the condition – it can only be done by eliminating other possible causes and by someone ‘in the know’ observing the presentation of symptoms. I had basic nerve conduction tests, and as part of my SI joint investigations I had had MRIs and xrays and had seen musculoskeletal specialists. There was nothing to which the problem could be attributed, but it was very much a physical thing. I was absolutely unable to make my left leg and foot turn the pedal in the way that it had many millions of times over the last 50 years. It didn’t hurt – it just didn’t work.
Finishing LE JOG in 2021, just before it all went wrong
But whilst I was deeply frustrated and at times very distressed that I had lost something that was such a big part of my life, as I connected with other groups of people suffering from the same problem, I realised that actually I am, relatively speaking, one of the lucky ones. Quite a lot of runners who get dystonia find that their walking is affected and some even end up having to use mobility aids. For professional musicians it is often the end of their professional careers. For me, its just my hobby and in every other way, my day to day life is unaffected. I am still fit, I can hike all day with my dogs and I have started to enjoy a more diverse range of activities, not to mention having a bit more time in my life now that I’m not cycling so much. But nevertheless, I still struggle not to mourn the loss of this activity that was such a part of who I was.
The official medical line is that dystonia is ‘incurable’ – something that is neither helpful nor accurate. There are lots of people out there who have completely overcome the condition and returned to previous levels of activity, in some cases performing better than before. The problem, I think, is that dystonia is simply too broad and too rare to be meaningfully researched in all its different manifestations. I suspect that the ‘incurable’ definition comes from the fact that most research that has been done has looked into general dystonia (affecting the whole body) or dystonias that start earlier in life and are not linked to the regular practice of a specific activity. But it is also likely to be due to the fact that changing movement patterns, once they have become normalised, is very difficult and takes a long time and therefore any research would require long term tracking of samples of people who have persevered to overcome their issues. As a condition TSFD is simply not enough of a priority.
Where research does exist into people who have got over the problem (and from hearing from people who have simply got over it themselves), there are some things which seem to work and some which don’t. In the US, where the condition is more widely recognised, medical practitioners typically use botox injections to stop the overactive muscles from over working and spasming, with the intention that this will ‘force’ the underactive muscles to step up to the plate. But whilst this can provide immediate relief that is particularly important for people who can’t walk properly, for example, it appears only to work for as long as the effects of the injection are being felt. It does not address the faulty signalling at the route of the problem. Also in the US, people diagnosed with TSFD are often given the same drugs that are used to treat spasticity in other neuromuscular conditions such as Parkinsons and MS. In some cases these drugs can help by relaxing the inappropriately tense muscles, but again, it tends to be a sticking plaster, rather than something which breaks the cycle and leads to a fix.
By contrast, the things which do seem to work take much longer. It generally starts with the person learning to get back in touch with their body and what is going on. If anyone had said these words to me a few years ago I would have thought ‘woo woo’! But from my own experience I have realised that you can be hyper-aware of your movement and still not actually know what is going on. As I worked at breaking down the dysfunctional movement pattern and reading what is happening when I pedal, I started to feel the chain of events that was causing it – the unintended tension in the right side of my back, which causes the right side of my pelvis to drop and shift backwards on the saddle. In response, the left side of my pelvis has no choice but to shift forwards and rotate inwards. Then, as my right heel starts to drop at the bottom of the stroke (because I am shifted over to that side), my left foot plantarflexes and inverts (goes into a vertical position and rotates heel out) and my left ankle eventually locks out because it is in completely the wrong position. It all makes perfect sense now that I know what’s going on!
But stopping my brain from doing it is ridiculously frustrating, difficult and time consuming. I am now working with a movement specialist who has been fairly transformational in terms of learning what functional movement of my pelvis feels like. He is also slowly but surely addressing the muscle weaknesses which have been developing over the last few years as I have increasingly stopped using certain muscles in the way that they should be used. I have also been learning how to consciously release the tense muscles and I have just started seeing someone for Myofascial Release Therapy to help with this. My on-the-bike training now is pretty much limited to short sessions where I practice functional pedalling and try to build this up. I have to rely on other forms of exercise to maintain my fitness levels whilst long walks with the dogs give me my outdoor fix.
I am definitely making progress and I have come a long way since January this year when I couldn’t turn the pedals but I didn’t know why. But I still have bad days when I absolutely despair – particularly when I’m fatigued and my foot starts to flop around all over the place like the bad old days. Apparently this will happen. When you are tired, your brain will tend to revert back to what it knows best which, unfortunately, at the moment is still the wonky faulty way of pedalling. Correcting some of the underlying issues with my pelvic alignment and muscle weaknesses seems to be delivering results relatively quickly, but retraining my brain – the neuroplasticity bit – will apparently take a lot longer. Almost everybody who has found a fix has said it took them years rather than months. So I am going to plough on and keep the faith. I am enjoying my more diverse training programme and all of the things that I am doing that give me pleasure. I am finding joy in my growing awareness of what functional movement feels like and realising all of the subtle ways in which my movement has probably been compromised for quite a long time, long before it was causing me any obvious problems. And I have no doubt that at some point over the next few years I will be cycling comfortably again and looking back at this time, wondering how on earth I managed to drift into this situation in the first place. Hopefully now I know enough though that in future I would see it coming and take steps to stop it ever happening again.
