BIRMINGHAM, UK – Widespread pain, feeling persistently tired or run down, with multiple referrals for seemingly unrelated complaints over many years are potential signs that the patient sitting in front of you has fibromyalgia, experts said here last week at The Primary Care Show.
Having the confidence to make the diagnosis in primary care is important for being able to support people with the condition and coming up with a shared care plan for symptom management.
“You have to make a definitive diagnosis,” Chris Ellis, a general practitioner at Queensway Medical Centre in Wellingborough, England and co-president of the Primary Care Rheumatology and Musculoskeletal Medicine Society, told Medscape News UK.
Don’t be afraid to make that diagnosis: “There are tools to allow you to do that,” Ellis added, referring to the Royal College of Physicians’ (RCP) fibromyalgia syndrome diagnostic worksheet published a couple of years ago.
Validate and Reassure
According to the UK-based charity Versus Arthritis, which Ellis also works for as a core skills trainer in musculoskeletal (MSK) medicine, up to 2.9 million people in the UK have the condition. That’s around one in every 20 people, said Ellis.
Fibromyalgia is characterised by persistent and widespread pain that is associated with intrusive fatigue, sleep disturbance, impaired cognitive and physical function, and psychological distress. It is a valid diagnosis, said Ellis, classified as chronic primary pain in the International Statistical Classification of Diseases and Related Health Problems (ICD)-11.
Don’t be afraid to give this label to people, they often want and need it, physiotherapist David Easton said at the meeting. Easton works in a nurse-led, same-day, urgent care team in Cardigan, Wales and is also one of Versus Arthritis MSK trainers. But, he added, the diagnosis must be made with compassion and given with the reassurance that people with fibromyalgia can and do get better.
“Better in a very broad sense,” Easton acknowledged as there is a “massive” variation in the disability that can be associated with the condition. Certainly, there can be improvement for many people and it is important to “put seeds of hope within your diagnosis”.
Because it is a complex condition with multiple considerations that do not just involve MSK pain, Eaton advocated that the task of managing people really needs to be shared across the entire healthcare system.
For instance, comorbidities such as depression and anxiety are common, and these can be associated with greater levels of physical symptoms and poorer overall functioning on a day-to-day basis. Fibromyalgia is also linked to an increased risk for irritable bowel syndrome. There are also psychosocial elements to consider and both healthcare professionals and patients can feel “overwhelmed”.
Complex Consultation
“What's really, really important is to take the pressure off yourself and also take the pressure off the patient,” Easton said. Continuity of care will help: “Take that patient on, take them under your wing, and support them,” he later told Medscape News UK.
Fibromyalgia is a complex condition for which there is no simple objective test. It’s not a condition that any healthcare professional or individual should expect to diagnose or be able to manage straightaway, Easton said. It is important to manage expectations and determine what can be achieved in the allotted time of the consultation.
It’s about developing a successful plan together with the individual, Ellis said. Listen to the patient, validate their symptoms and concerns, and think of the consultation as an intervention in itself. Ask the individual: What do you already know about fibromyalgia syndrome? Ask them to read up about it so you can work together to create a treatment plan that will work for that particular person.
Ellis noted that the goal is to diagnose and treat people within primary care, without referring to a rheumatologist. This is not because rheumatologists don’t want to see these patients – they may be happy to – but the goal on a national level is for people to be diagnosed and managed within primary care.
Expect Normal Test Results
The diagnosis is really all down to the clinical history. There is probably no point in counting the number of painful or tender joints during a clinical examination, Ellis and Easton both said, as people with fibromyalgia are likely to hurt everywhere.
Alongside the RCP tool, tests that could be considered are routine bloodwork, such as a full blood count, urea and electrolytes, liver function tests, and creatinine kinase. But leave the antibody tests – rheumatoid factor, antinuclear antibody, antineutrophil cytoplasmatic antibody, and immunoglobulins – alone, they both advised. These can give false positives or negatives and aren’t particularly useful in helping to make the diagnosis and can delay people getting the care they need.
And keep in mind that any test that is done is likely to be within the normal range, Easton said. “Set that expectation” with the individual, he advised, because it “puts you in a position of strength and trust”.
‘Not Medical’ Management
Managing fibromyalgia needs to consider multiple factors. This includes reducing pain, improving sleep, reducing anxiety and depression, according to Easton and Ellis.
Improving sleep can be as simple as asking someone to keep a sleep diary, said Easton. Doing so may help them see patterns that could be changed to help them get a better night’s sleep, without even being given specific advice on sleep hygiene.
With regards to pain, the key message is that generally, “the drugs don’t work”, Ellis noted. Often these are doing nothing for people’s pain but will be putting them at possible risk for side effects.
“The treatment is not medical” as a rule, Ellis said. “You get fitter, you correct your weight, destress, sleep better, and then generally you get healthier. What of that actually makes a difference, we don’t actually know.” The important thing is to get people moving, he added.
Easton observed: “We know it’s safe to move”, and most people should benefit from working with a physiotherapist. Even when people have already tried physiotherapy and believed that it did not work, it’s vital to question whether the right programme was prescribed; did the individual really engage with it and participate?
Another reason for prior physiotherapy not being successful could be down to a person’s gait, as consultant fellow podiatrist and pain specialist Afni Shah-Hamilton, who works in private practice in London, pointed out to Medscape News UK.
“I think we need to start readdressing the conversation, looking at where the root cause of restrictions are, not where the symptoms are,” she said. People who have scar tissue around the breast area, due to cancer surgery, for example, can have shoulder or neck pain. That then alters how they are able to move and can result in hip, knee, or other MSK pain.
Shah-Hamilton argued that there is perhaps a bigger role for podiatrists to play in the evaluation and management of people with complex pain problems, such as fibromyalgia, than they currently do.
Key Takeaways
Consultant rheumatologist Benjamin Ellis, MBE, who is the clinical director for outpatient transformation at Imperial College Healthcare NHS Trust in London and senior clinical policy advisor for Versus Arthritis, had two key takeaways.
First, healthcare professionals have an important role to play in providing people with fibromyalgia with “validation, reassurance, and hope. We can’t underestimate the value of that”, the rheumatologist said.
Second, “If it feels like fibromyalgia, it probably is, and we should have the confidence to say to somebody: ‘I think you may have this’. You may also need to do more investigations to check it's not something else”, he added.
This article is based on two presentations at The Primary Care Show 2024 that were sponsored by the UK-based charity Versus Arthritis. C. Ellis, Easton, and B. Ellis work as advisors or trainers for the charity in addition to their professional roles. Shah-Hamilton is the chief podiatrist for Tiptoe Foot Care.
Sara Freeman is a medical journalist and writer based in London, UK. She is a regular contributor to Medscape and other specialist healthcare media outlets.