Fiona Russell on Hypermobility Syndrome

When I first read Richard Seraphinoff’s piece on this website, it immediately resonated with me. Here was a story of recovery about an injury that did not involve full physical recovery from that injury, something I had not come across before. Any accounts that I’d previously read of musicians’ injuries always seemed to be stories of triumph over adversity, of how they met the right surgeon, physiotherapist, healer, or teacher who set them on the path to recovery. It may have taken years and several wrong turns, but they got there in the end. There were surely musicians out there who had experienced career ending events, but I came to the conclusion that no one wanted to admit that it happens, and even if they did, who would want to read about failure? Public accounts should be full of inspiration for others—of the blood, sweat, and tears that it took to finally recover. Or should they? 

The tagline of this website is “stories of musicians and their recoveries.” But what kind of recovery? I am one of those musicians who had to give up a career for health reasons, but twelve years on, I feel that I have made some kind of recovery at least, even if it is not the one that was hoped for. It’s important that our stories are heard too—the injuries, the struggles, and how we picked ourselves up, even if it was not a successful return to life as it once was. 

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I studied recorder at the Guildhall School of Music and Drama. I had also played trumpet to a reasonable standard and it was soon suggested that I try the cornetto. It was perfect for me. I felt an almost instant connection and, although I didn’t immediately love the sound, I became fixated by this peculiar instrument. 

I started to pick up work whilst I finished my degree and then spent two more years studying part-time with Bruce Dickey at the Schola Cantorum Basiliensis. I was a freelance player based in the UK, but most of my time was spent travelling and playing with different ensembles all over the world. I loved the slightly crazy, unpredictable life playing incredibly beautiful music in stunning venues. 

Over the summer of 2007 I began experiencing pain in my right wrist. I’d had this before but this time it was a bit more persistent and I was told it was carpal tunnel syndrome. The pain continued and things became more worrying in September of the same year when I lost the feeling in fingers on my right hand mid-performance—not ideal when playing an instrument with fingerholes. By October the numbness was happening in every show during the final stage of a world tour with les ballets C de la B in Paris. For my own sake, as much as the company’s, the director sensibly sent me home, and without realising it, I had played my last performance on cornetto and my last as a professional musician. 

I took the train home, made some phone calls, and booked an appointment with a hand specialist. She described me as being hypermobile in my upper limbs, particularly my wrists and fingers. Hypermobility was not a term I had come across before and I was totally unaware of the condition. I was set some exercises and my playing was restricted to three five-minute sessions a day, but only on the cornettino—an instrument a fourth higher and therefore smaller, lighter, and easier to hold than my regular cornetto. I hoped that this micro-practice might just keep my embouchure muscles functioning until I was able to return to normal levels of playing. 

The next few weeks were an unhappy mix of systematically deleting work from my diary, finding deps [subs] for all the concerts I was cancelling, and making appointments with various specialists for tests and examinations. The test results were disappointing; nerve conduction studies showed that my nerves were actually functioning normally despite the symptoms. My hopes were resting on one particular hand surgeon in London, a leading specialist who had a reputation for working with musicians, but he said there was nothing that could be done surgically and his only advice was to stop playing. I could eventually get normal use back for everyday tasks, but I should look for another career. I was discharged by him and the hand therapist and suddenly found myself very much alone. It was December 2007; I had gone from wrist pain to a career-ending injury in the space of just a few months. 

When ringing round to permanently remove myself from the chamber ensembles, fixing lists, and all of the work I was booked for, I was offered all manner of well-meaning gestures and advice ranging from diets to prayer. Some people questioned why I had given up so easily; what level of damage could I possibly have done that meant I was cancelling work more than twelve months in advance? 

I really wrestled with that—why had I just given up? Why wasn’t I out there searching the world for a solution? Something felt wrong, more than soft tissue damage in one wrist, but at that point I had nothing more to go on. For the time being though, I was unable to play and needed to find another job which was a soul-destroying task. A colleague asked “what will you do now that you are no longer a musician?” That really made me think. Was I no longer a musician? I wasn’t playing, but did that take away my identity? If I was no longer a musician, who or what was I? My immediate reaction was to get as far away from music as I could; it was just too painful. I avoided concerts, I didn’t even listen to any classical music at home, and I sold or loaned out my instruments as quickly as possible. In some ways it felt very free; I could do anything I liked! In reality, however, I had no source of income. I was very grateful to have been supported by a musician’s charity whilst receiving treatment, but that ended once I “retired.” I was unable to find funding for training or education in another field as I already had a degree, and I soon realised that my best chance at finding work was to stay in the industry that I knew best—although even that proved tricky as many jobs wanted admin and office experience over musical knowledge. After a few months I was offered internship in artist management, which is the area of work I have stayed in ever since, and I gradually came to terms with my situation. 

I still struggled with not being able to play anymore, but I was more upset by not knowing what had happened. Although I had that feeling that something fundamental was wrong, I still didn’t know what it was. I had more nerve conductions tests and MRI scans on my neck, shoulder, and arm but they didn’t show any issues. I remember going home and thinking that I could maybe still get back to it, and for a couple of months I would occasionally try to play the one instrument I had kept, but of course, having taken so much time away from it, the results were inevitable and frustrating. By this point I was taking regular medication for nerve pain and I was still no closer to understanding the problem. I was however, picking up small pieces of information that, when put together, gave me a much bigger picture. I saw several physios, one who commented on the range of movement in my elbows, and another who fetched her colleague to come see how far my shoulders moved. From this I got an understanding that I was hypermobile in more joints than I first thought. I went to a local osteopath who did nothing much for my arm pain, but made a passing comment on how I stood, and the uneven wear on my shoes, and that I was flatfooted when weight bearing. This is a classic sign of hypermobility syndrome and was the “lightbulb” moment. By putting all these seemingly innocuous comments together with some online research, I was able to work out that I was hypermobile in most of my body and it was this that was causing the problems. 

It sounds ridiculous that I had managed to reach the age of thirty without realising this, but the old cliché that hindsight is a wonderful thing was never truer. As with most people who have hypermobility syndrome or Ehlers-Danlos, the clues are there but they appear so remote from each other that the average time it takes for a diagnosis is something like ten years. As a teenager I became aware that some of my fingers are “double jointed,” as the top knuckles quite obviously bend back the wrong way under the slightest pressure. What I wasn’t aware of was that most of my other joints are also affected to various degrees—it’s just not something that you think about or compare with others. If it’s normal for you, it doesn’t occur to you that it might not be the same for everyone else. Looking back, I can list many experiences in my childhood and teenage years that can be attributed to it, but none were major, and most went almost unnoticed. Spread out over more than ten or fifteen years, these experiences had no obvious connection at the time.

Being hypermobile is not a problem in itself. Plenty of people are hypermobile, including a large percentage of children, many of whom do grow out of it, and it can even be advantageous to some sports and activities like gymnastics and dance. Musicians too can find it beneficial, and for most people, the symptoms do not extend beyond having a greater range of movement than normal in some joints. They have no pain or any other issues. When hypermobility does cause problems, it strays into the world of “connective tissue disorders.” 

Now the complicated bit:

Hypermobility Spectrum Disorder (HSD) is a connective tissue disorder. Others include all types of Ehlers-Danlos Syndrome (EDS) and Marfans Syndrome. HSD and hypermobile EDS (hEDS) present as very similar conditions—although in both, the symptoms can range from fairly mild to life altering. HSD and all types of EDS result from various genetic collagen alterations. Collagen is the protein found throughout the body in the structural systems, and the genetic mutations found in people with EDS lead to the collagen being faulty. Either it isn’t made correctly or cannot carry out its function. The understanding and research into connective tissue disorders is still only in its infancy. Many GPs and other medical professionals have never come across it and it can take many years before a diagnosis is reached. Collagen acts as the glue that holds your body together. Without collagen, the connective tissue can’t do its job in supporting bones and joints and holding organs in place, and everything is loose. Collagen is found literally all over your body. Internal organs are held in place by connective tissue. It’s in your eyes, skin, your gut, and blood vessels. The main problem with diagnosis is that the condition affects so many parts and systems in the body that they are often only treated individually and never linked together. The patient may be labelled as a hypochondriac or an attention seeker, or misdiagnosed with mental illness. Meanwhile, a very real and problematic physical condition exists.

I was fortunate to see a specialist physio about five years ago who said I was “somewhere on the spectrum,” but my GP has only very recently agreed that I have HSD. I now know that there is a concrete reason for all the issues I’ve had, and this gives me reassurance that, although no one could put their finger on it at the time, my gut feeling that something wasn’t right turned out to be correct. 

Ironically, having HSD most probably enabled me to play cornetto in the first place. It’s an awkward instrument to hold for anyone, and for someone with tiny hands like me, it should be impossible. I managed by putting my hands and fingers in what I now know to be unnatural positions. I wouldn’t be the first musician to benefit; it’s thought that Paganini was hypermobile, possibly with EDS, and from looking at his appearance and hand span, Rachmaninov quite likely had Marfan Syndrome. 

Once I had given up the idea entirely of picking up the cornetto again, I didn’t want to think about playing anything else. Nothing was going to replace it, and I also didn’t think it physically possible. After about five years however, I did begin wonder if there was something else I could play, and through a process of elimination, I arrived at the hand horn. The modern horn didn’t interest me at the time, and I wondered how crazy an idea it was to start on the hand horn. I quietly set about doing some research. I knew players and teachers that I could have gone to, but I wanted to start from the beginning with someone who hadn’t known me as a cornetto player—I didn’t want any expectations from either side. I found Pip Eastop’s website and thought that he might be the right person to approach. His articles about playing and teaching suggested that here was someone who looked at things from a different angle; nothing was fixed, questions were constantly being asked and methods reassessed. In addition to which, he had undertaken Alexander Technique training, and I hoped that this would mean he would understand a little of the issues I might have. 

Pip is a phenomenal horn player and an extraordinary teacher. He’s completely accepting of the various and ever-changing quirks and problems I present with, and takes time to work with me to find solutions. I do play modern horn now which I’m able to do safely thanks to his “PipStick” which takes all the weight of the instrument and keeps it perfectly balanced. There is literally no other way I can play—it’s an integral part of my instrument. Occasionally a discussion pops up on social media about using supports and aids, and there is usually at least one comment along the lines of it being cheating, or that you should just work out to get strong enough. Initially I felt very awkward and self-conscious about using it, but that rarely happens now. A few years ago I performed Schumann’s Konzertstück and led the quartet seated on a riser whilst the rest of the soloists stood around me. Some string quartets often do the same with their cellist sitting and the upper strings standing. Using the PipStick makes the difference between being able to play and not; it enables me to make music again, to be part of ensembles and orchestras, and to play in concerts. To me that is priceless. 

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HSD is a pain to live with. It’s a pain in many places! It’s difficult to explain to other people, and I completely understand how weird it must sound unless you have done some research (and most people who have HSD do a lot of research!). Personally, I have some level of background discomfort every day and a medication schedule that keeps a baseline level of painkillers in my system. I support that with various other tools depending on what and where the problem is, such as heat, taping, physio, and bracing. I’m affected from my teeth to my toes, including my skin and digestive system. It has limited my career (even in my current job), my social life, and hobbies, and even impacts what I eat and what I wear. I’m constantly assessing energy levels and planning ahead to manage chronic fatigue. It’s estimated that the muscles in someone with HSD need to work up to fifty percent harder simply to compensate for having useless ligaments, which means severe fatigue is ever present. It will sound that I am complaining and feeling sorry for myself, and yes, I’ll admit that at times I do both. I am, however, acutely aware that my symptoms are generally manageable and could be more severe. I am very appreciative that I am able to work and have a job in an industry that I love and with a company who are aware and flexible to my needs. My partner is incredibly supportive. He spots when I am getting tired long before I would ever admit to it and he just accepts that, whilst some days are great, others will be challenging for us both. 

I had to make sudden and big changes in my life with little warning. Sportsmen and women make plans for their retirement; they know they have a certain number of years in which they will be physically at their peak and, although they may find themselves stepping back from top level competing, or leave the field earlier than planned due to injury, they will always have known that they will need to take another direction at some point. Being a musician is also a very physical activity. Of course, there are conductors who never stop; singers and brass players may step back earlier than pianists, but still, unexpected things can happen. Students are now being encouraged to think beyond simply being a performer, far more so than when I was studying, but I still don’t think it is talked about enough. What might be a small and largely insignificant injury to an office worker can be career ending for a musician, and it can happen in an instant or be building for years without you noticing. Have a plan B. Even if it’s just a mental one. No one wants to think about the “what if,” but we all should. You may not call on it because you are injured; one day you may decide that music is not for you or that you’ve had enough of the anxiety and pressure of performing or the uncertainty and chaos of freelancing. That’s ok and it’s also ok to think about it in advance. It doesn’t mean that it will happen, but it does mean that you will be better prepared for it if the worst should happen. And if it does, you need to find a way through. You need to be open to looking at things differently, and to accept that things will not be comfortable for a long time. It can take years, and it will take a team of friends and colleagues old and new, and you may end up in a place that you never could have imagined. It won’t necessarily be worse, but it will be different. 

What about the recovery I spoke of at the beginning? It’s a physiological one, not physical. I can now listen to recordings of the music that I used to play, and even recordings that I am on. I am happy to read of my old colleagues’ successes and projects. I have cleared out most of my music and am using the space created for things that are important to me now. I miss the music, the way of life, the physical and psychological feeling of playing, and the people that I shared all of that with. I will not recover from HSD and it continues to throw up new challenges, but I can learn to manage it and eventually learn to live with it. I’m not at the acceptance stage yet, but that will come. Playing modern horn has opened up several hundred years of music that I wouldn’t have played otherwise. The first time I played a Bruckner symphony in a really good amateur orchestra was as emotional for me as playing Gabrieli and Monteverdi in San Marco for the first time with a world class ensemble. Each was a vital experience for me at that point in my life.

-Fiona Russell, January 2020

For more information on connective tissue disorders, please visit the Hypermobility Syndromes Association and the Ehlers-Danlos Society.

For more information on the PipStick, please see Pip Eastop’s website.