“It’s such a wicked, lonely illness. It’s taken over my whole life. It’s exhausting, I have to hand my grand-daughter over to my husband. You look all right so you don’t get any sympathy…”
Fibromyalgia is one of the most common chronic pain disorders in the UK, estimated to affect between 2 and 5% of the general population. The pain seems to come from chemical imbalances in the brain and spinal chord, that lead to an amplification of the body’s sensitivity to pain. The precise reason for this isn’t known and there are multiple possible factors, although it is often set off by a traumatic event such as a car accident, illness or childbirth. In classic cases, patients will have widespread pain in many or most parts of the body, in locations that change over time. Alongside this come concentration and memory issues known as “fibrofog”, and intense fatigue.
Kay, who is 65, thinks she has had fibromyalgia for five years, set off by an episode of shingles. She remembers being in severe pain for days, while her husband didn’t know what to do with her. It started off in her right side, then travelled all round her body, including her knees, ankles and feet. She describes it as “like having arthritis all over”. It has also given her a bad sweat, in all weathers, and facial skin problems.
Because of her fatigue, the retired former ICI chemist has had to give up the choral singing and bike riding which she had so enjoyed. She’s been left with a low tolerance for noise, bright lights and stress. Her walking slowed down so much, she describes an elderly lady on a zimmer frame giving way to her on the street, telling her “you go first, dear” – and then overtaking her. “I can laugh about things, but a lot of the time I cry. It’s desperate really,” Kay says.
Kay is now getting some relief thanks to Berkshire-based pain consultant and fibromyalgia expert Dr Deepak Ravindran, who she has been visiting for almost two years. Her treatment has included medication, an injection to her Achilles tendon and referral to an orthotist, plus regular hydrotherapy and psychological support. Kay says she has not found it easy to trust others with her care but Dr Ravindran has been “fantastic. He’s so gentle and sympathetic”.
Dr Ravindran has been treating fibromyalgia for almost 10 years and has become a top specialist, writing a book to raise awareness about the condition, giving educational talks to physiotherapists and GP practices and helping set up dedicated programmes for fibromyalgia in the NHS. He has aided the setting up of a very active and enthusiastic patient group, the Reading and District Fibromyalgia Support Group. It meets monthly and Dr Ravindran attends most meetings.
“All group members are volunteers and do their best to support each other”, says a spokesperson for the group. “We exchange best practices and discuss what therapies helped them with their condition. Dr Ravindran has been a lifeline. He understands the pain and fatigue we all have. He will listen and advise us all in the most professional way possible. He attends all seminars so he is fully up to date with drugs and treatments for fibromyalgia. We are very fortunate to have him”.
Stressful modern lifestyles and environmental factors are fuelling an increase in the number of people with the condition, Dr Ravindran believes. He adds that in recent years, knowledge about fibromyalgia has increased significantly: it should no longer be “poorly understood”, yet this is often what healthcare professionals still feel about it. Many of his patients have been left confused by conflicting or unsatisfactory explanations from other specialis
ts, who either are unwilling to accept that the condition exists, or have failed to communicate what it is all about to patients who are already struggling with concentration and memory difficulties.
Whereas a GP might offer a 10-minute appointment and other consultants 15 or 20 minutes, Dr Ravindran gives fibromyalgia patients consultations of 30-45 minutes or as long as an hour. His aim is to establish a rapport with the patient, confirm to them the very real nature of the condition and remove any sense that they are to blame. He then suggests concrete ideas for managing the condition in the context of an individualised treatment plan.
“There are a wide variety of treatment strategies, ranging from the non-medical to the medical to injection-based intervention and surgery”, he explains. “Each patient needs a personalised approach, sometimes with elements of all three. This must be done together, not in isolation. Too often the typical patient journey involves going to see a GP, a physio and seeing someone separately about anxiety”. A joined up approach not only allows more effective treatment. It is crucial for diagnosing and treating patients when they have the condition in a mild or moderate form, to ensure it does not develop into a debilitating condition that might, for instance, stop younger fibro patients from ever working again. “A sizeable chunk of the working population may be impacted by fibromyalgia,” Dr Ravindran says. “I am seeing patients in their late teens and early twenties”.
Circle Rehabilitation, where from this month Dr Ravindran is running a weekly fibromyalgia clinic, is ideally set up to deliver these services. While it can take three to six months for most fibromyalgia patients to be seen by an NHS specialist, we offer the chance to step on to a bespoke rehabilitation programme just a week to 10 days after the first consultation. Our multidisciplinary team of doctors, clinical psychologists and therapists provide psychological support, physiotherapy and medical investigation and injection all under one roof.
We offer psychological therapies including Cognitive Behavioural Therapy and Acceptance and Commitment Therapy; and Dr Ravindran will give advice on better sleep management, to address the disturbed and fragmented sleep that so often accompanies the condition. Because Circle Rehabilitation is base
d within an elective hospital at Circle Reading, patients also have access to a wider network of over 100 top consultants for advice and treatment.
Our Rehabilitation gym has a set of state-of-art therapy and exercise equipment unique in southern England, outside specialist professional facilities like the Police Rehabilitation Centre at Flint House. Equipment which is particularly beneficial to fibromyalgia patients includes the Hydro Physio – an aquatic treadmill allowing patients to exercise with their muscles and joints supported and their pain eased by the warm water around them. Circle is also proud to have the highest standards of hospitality and comfort: Circle Reading Hospital has an airy, calming atrium, a café serving freshly prepared meals and snacks, and a reception offering a concierge service that can arrange a private car for you to and from the hospital.
We have had glowing testimonials from our rehabilitation patients, who have praised our “amazing” staff and described their treatment as “a notable therapeutic success” and “a totally positive experience”.
Dr Ravindran is hopeful that there will be exciting developments in the treatment of fibromyalgia in the next few years, with XMRI radiological research ongoing and research into new drugs at advanced trials stage. For current patients, this remains a draining, chronic condition whose progress month to month is unpredictable, and the most important thing is that their pain is managed expertly. “You just have to trudge on,” says Kay, “I have good days and bad days. You want understanding, not sympathy necessarily”. She’s a highly determined person and in spite of all the pain and fatigue, she says, she remains on the go as much as she can.
Circle Rehabilitation and Dr Ravindran’s new service will allow many like her to keep their independence and to live in as much comfort and freedom from chronic pain as possible.
Find out more about Circle Rehabilitation’s fibromyalgia clinic here