As with any other disability or chronic health condition the experiences of someone living with fibromyalgia will be unique to them and there isn’t just one way to manage its symptoms. Therefore, the treatment options for people with fibromyalgia are likely to include support from several different healthcare professionals such as GPs, physiotherapists, dietitians or occupational therapists.
It took a long time for me to receive a diagnosis for fibromyalgia. I also have a condition called Joint Hypermobility Syndrome which, like fibro, has symptoms of chronic pain and fatigue and so my fibromyalgia remained undetected for some years until I was referred to a consultant and expert in the condition.
For some time in the run-up to this diagnosis I saw numerous experts who were unable to help me, for the main part I would say due to a lack of awareness about the condition. One memory that still haunts me was when I was diagnosed with chronic poor posture by a consultant physiotherapist. Although I am sure she was trying her best this information was deeply upsetting as to me it implied that the chronic pain I had been experiencing for some years could have been corrected if I made more of an effort to sit up straight and correct my posture. Essentially it felt like she was telling me it was my fault.
More recently I have been reminded about the importance of having a good relationship with your healthcare provider. Having moved to a new area I was forced to register at a new doctor’s surgery. I must admit with some reluctance as my former GP was incredibly supportive in the treatment he provided.
Although my initial meetings with my new doctor went well and there were no alarm bells ringing that he would be anything other than supportive things gradually went downhill. In my experience there are two types of individual you come across in the healthcare professions; those who come purely from an evidence-based, medical perspective and those who support a social model which looks at the individual or patient as a whole individual influenced by numerous different things and life experiences.
Those working from a purely medical perspective may sometimes find it difficult to support people with fibromyalgia as there isn’t enough research into the condition to identify its causes and to fully understand the best treatment options available. Although my GP acknowledged that fibromyalgia does exist it soon became apparent that he would not support a referral to individuals who might be able to help me with some of the symptoms I was experiencing as there “wasn’t enough evidence” that they would be effective. Two examples come to mind.
I take a proactive approach to managing my health and as such I arranged a meeting with my doctor so that we could develop a treatment plan that would incorporate several options including but not limited to medication, exercise and education (i.e. knowing more about the condition). I prepared for the meeting by having a list of questions that I felt would be helpful.
One of the first things that I asked him was in relation to my poor memory and what is widely known as “fibro fog” or “brain fog”. I experience what I can only describe as “blank” moments where things just disappear out of my brain. I can be told something in one instant and forget it seconds later. My GP’s response to this was that he didn’t recognise the term “fibro fog” or “brain fog”, he said it wasn’t a medical term and asked me to explain it to him. Shocked at this response I found myself trying to explain this confusion I had been experiencing and how it affected me knowing full well that he understood exactly what the term meant. Just to be clear, “fibro fog” is not a term that I have come up with and is widely used in the medical literature provided to people when they are initially diagnosed with fibromyalgia. So, even if this was the first time he had heard of the term, which I feel is implausible, arguably he should have had an awareness of this symptom anyway. At this point I could see that his style of communication had changed to a more aggressive tone.
Next, I wanted to discuss my diet and nutrition. Having done a lot of research into the role of diet and nutrition in the treatment of fibromyalgia I made the decision to go gluten and dairy free. Whilst I acknowledge that there isn’t strong evidence to support any one specific diet to treat fibromyalgia there is some evidence that patients living with the condition who have gone gluten and dairy free have found that it has helped with the management of their symptoms. For example, I notice that if I eat dairy my pain levels increase dramatically. I also experience IBS symptoms at times which is another condition that is commonly associated with fibromyalgia.
I asked whether I could be referred to a dietician for my IBS symptoms and to make sure that in the absence of dairy and gluten that I still had a balanced diet, that would support general good health. For example, making sure that I had enough calcium, fibre, essential vitamins and nutrients. Ignoring the fact that I had requested this referral as a general overview of my diet he focused purely on the IBS and refused to make the referral. He argued that most of the population experienced symptoms of IBS at some point and that the symptoms that I was experiencing were probably down to the fact that I was excluding dairy and gluten. I was given a leaflet about an online webinar which is aimed at people with IBS. When I asked him about what it involved, he said that he had no idea and that I would have to investigate it myself. Essentially, he was providing me with a treatment option that he had no knowledge or expertise of. He then told me that my time was up and that he had to see his next patient.
Absolutely floored by the fact that a caring professional couldn’t be any less caring I decided to move practice and change doctor. Having done so I couldn’t be happier. It was only once I received adequate care that I realised how poorly I had been treated. In my initial meeting with my new doctor she took time to get to know me and how fibromyalgia affected my life and the lives of the people around me. She discussed medication and agreed, without hesitation to refer me to a dietician. She also enquired whether I was aware about local support organisations or benefits that I might be entitled to. I didn’t feel rushed at all and was so overwhelmed by her care and attention that I almost felt tearful.
For me fibromyalgia is for the most part an unseen condition which is largely misunderstood, therefore it is incredibly important to have adequate support with healthcare professionals who are able to show real empathy for what you’re going through. Whilst I fully understand the importance of evidence-based treatment it is also possible to support individuals who take ownership of their treatment and actively try to help themselves. In an ideal world we should be able to work in partnership with healthcare providers to feel better, it should not be a cause of further stress and anxiety.
In his FibroGuide Dr Daniel Clauw discusses this further and provides information about how best to communicate with your healthcare provider. There is even a worksheet to download that helps you to prepare for meetings with healthcare professionals allowing you to organise and prioritise your concerns.