When we set up our studio, we assumed we’d see injured office workers and sporty types who had over done it over the weekend, with perhaps a smattering of agricultural labourers who were willing to part with a reasonable amount (in relative terms) to carry on working without pain.
A year later, I find myself treating almost exclusively clients with chronic pain, mostly fibromyalgia – also known as Fibromyalgia Syndrome (FMS). It’s been both a privilege and a learning experience, so I thought it may be helpful to share our experiences; not about physically treating FMS clients – but about dealing with the psychological aspects of treatment.
For those not familiar with it, FMS is a frighteningly common condition; it’s estimated that up to 4.5% of the UK have a diagnosis, although the true figures are likely to be higher. The condition affects mostly women (six out of seven people with the condition), mostly people around middle age (30 – 50), and mostly following either a substantial physical or mental trauma.
Symptoms vary for people with the condition, but the most common – and most significant for physical therapists – is a widespread pain across the body, including muscles, joints and skin. The pain can feel like burning or aching, and can often be worth across the back, neck and arms. Other common symptoms include hyperalgasia, stiffness and muscle spasms as well as increased fatigue. People can also be clumsier than they should be and find it difficult to concentrate or remember things; this aspect of FMS is sometimes referred to as “fibro fog”. FMS is often exacerbated by work and lifestyle stress – as the majority of people with FMS are in middle age, there is generally upheavals at home and work, as well as the possibility of the peri-menopause or menopause making symptoms worse.
Standard medical treatment involves medication for pain (tablets or patches or both, and sometimes very high doses of very strong painkillers), and sometimes CBT with a counsellor. There is often a low-level prescription for anti-depressants as FMS can come with anxiety.
People with FMS often rightly feel ignored, abandoned or forgotten by the medical community. My clients frequently talk about how GPs and specialists have laughed at them, told them that they are a “drain” on both society and the NHS, or told them that they will always be in pain so they’d better just deal with it. They are also often told that “It is all in their head”, and while – on one level this is true given how pain science has advanced our understandingly – unsurprisingly the patient takes it to mean that the medical professional thinks they are imagining it all, and that their pain isn’t real (and it is very real to them), and so they feel even worse.
Despite FMS clients presenting with an array of physical symptoms, we’ve found there are common, psychological aspects to care that help all our FMS clients; and these are some of them.
Firstly, we look to allow extra time for their appointments.
FMS clients often feel they are not allowed to talk about their condition. With GPs increasingly enforcing short, single issue appointments, and FMS clients often suffering from anxiety and fatigue, it can be a huge relief for them to simply be able to talk about what is wrong and have someone listen to them.
Secondly, we look to increase their understanding of pain.
FMS clients have often internalised off-the-cuff, unhelpful remarks made by health professionals they have seen before. Unfortunately, especially for older clients, they are unwilling to even mentally questions what a GP has told them or ask for further information. So when they are told they are a drain on resources, or that there is nothing that can be done, they do not challenge this or make a complaint, and instead meekly go home feeling even worse. I have not yet met an FMS client who has had any explanation of modern pain science (such as the work being done by the NOI Group) to them, despite studies showing that in a client who understands pain, over time incidents of pain decrease. Explaining modern pain science to clients is something that has to be done carefully in order to avoid the perception that you are saying “it’s all in your head”; this tends to alienate FMS clients very quickly! Instead we tend to gently introduce the concept of reframing, using metaphors and stories that are appropriate for the client, before going into more explanation about how the brain is being protective in later appointments – although some FMS clients are still simply not open to this. It really is a process that has to be carried out at the client’s pace – it is worth remembering that many of these clients will have been effectively told they are making up excruciating, debilitating pain, and are very sensitive to any suggestion that this is the case!
Thirdly, we look to involve the client in their care.
Of course, any treatment on any client is always explained and carried out with consent. But as FMS clients often report being shut out of meaningful discussions around their care, being allowed options is a huge deal for most FMS clients. For instance, as trivial as it sounds, we make sure we have a wide variety of RockTape in stock – especially the patterned designs. If we use taping, we’ll ask them to choose which design they want. I have yet to have a client who is not delighted to make a choice, and doesn’t giggle excitedly when they get to pick. It genuinely makes a huge different (and if we could have some more awesome designs, please, our clients would really appreciate it).
Fourthly, we remember that clients can have problems with both memory and concentration.
Fibro-fog is a very real thing, and can cause some FMS clients a great deal of distress. We send an email confirmation that can be added to both Google Calendar and iCalendar, and three emails and a text reminder in the 72 hours before the appointment (each one says slightly different things and gets progressively shorter). If your clinic is more paper based, consider providing appointment cards for clients so that you’ve taken away the anxiety about remembering when the appointment is.
We find treating FMS clients is a real privilege. They are some of the bravest clients you are likely to meet in terms of battling through pain, and whilst you can’t “cure” their FMS, by providing physical therapy with consideration towards their specific psychological needs, you can make a real difference to their lives, and the lives of their loved ones.