The diagnosis of fibromyalgia, as told by Carenity members
May 6, 2019
Our members affected by fibromyalgia have told the story of their diagnosis! Symptoms, emotions, examinations, relationships with their doctors.
Carenity survey of 115 fibromyalgia patients in the United Kingdom.
On average, patients waited 3 years to be diagnosed and the majority consulted 3 doctors before reaching their diagnosis.
The journey to being diagnosed with fibromyalgia can be long, with the average journey to diagnosis being 3 years after showing symptoms. During this period, respondents said that they experienced different symptoms. These ranged from different severities but the majority of patients complained of the following:
Joint pain | Chronic pain | Memory problems | Swollen limbs | Nerve damage | Depression | Stiffness | Fatigue| Headaches |
Before the diagnosis: the impact of fibromyalgia
We asked our members what aspects of their daily life had been affected by these symptoms caused by fibromyalgia?
Chronic fatigue - 97%
Love life - 90%
Chronic pain - 90%
Social life - 88%
Hobbies and activities - 87%
Family life - 81%
Professional life - 69%
The majority of respondents reported that the daily chronic fatigue was the biggest impact on their daily life before the diagnosis, followed by their love lives. Fibromyalgia appears to have had a big impact on all aspects of patients’ lives. Fortunately, it seems that the professional life of patients was the least impacted, which gives the impression that at least employers and co-workers were understanding and accommodating concerning the symptoms of fibromyalgia.
Before diagnosis, 47% of patients did their own research on the Internet concerning their symptoms and they reported using websites such as the NHS, Facebook, medical books, Mayo clinic, WebMD and just inserting symptoms into Google. However, several respondents sought advice from loved ones who were in the healthcare profession or they had family members (mostly mothers) who did the extensive research for them.
Respondents to our survey were equally interested and uninterested with alternative medicines, with 50% having tried them and 50% not. Those who did try alternative therapies used homeopathy, acupuncture, reflexology, massage, reiki, meditation, yoga and CBD oil.
Being diagnosed with fibromyalgia: what you had to say
For many diseases, the road to being diagnosed is hindered with misdiagnosis. This is certainly the case with the participants in our survey with 37% of patients experienced a misdiagnosis before concluding they had fibromyalgia.
According to Carenity members, they were most frequently misdiagnosed with having depression, rheumatoid arthritis, arthritis, osteoarthritis, irritable bowel syndrome, Lyme disease, lupus and chronic fatigue syndrome.
The shock of the diagnosis
For some people after years of searching for a diagnosis and not being able to properly label their condition, being diagnosed came a massive relief. For others, it was a shock and a traumatic event. How did Carenity patients react to their diagnosis?
It was a relief - 47%
It wasn’t a shock, I was expecting it - 30%
I didn’t feel anything in particular - 15%
It was brutal - 15%
It was horrifying - 12%
Finding out that you have COPD can be a frightening event but surprisingly, 30% said they were expecting it while 7% of patients can’t remember how they felt at all. Fortunately, most members felt relieved and not particularly traumatised by the diagnosis.
The role of doctors and healthcare professionals
The role of the healthcare professional making the diagnosis is key. Sometimes patients do not feel sufficiently listened to or informed about their condition. The good news is that the majority of Carenity members felt that their doctor took their time telling about their diagnosis whilst also being calm and emphatic. The main problem members found with their doctor was the feeling that they didn’t care and they were cold and distant delivering the diagnosis. However, the positives far outweighed the negatives for fibromyalgia and their healthcare providers.
The following statistics show how members felt their doctors handled the situation of relaying their diagnosis to them:
44% - The doctor was very calm
43% - The doctor took the time to explain
33% - The doctor was very emphatic
18% - The doctor offered offered psychological support
23% - They looked like they didn’t care
16% - They were cold and distant
13% - They were too fast explaining
10% - They used cold and scientific language
The patient's struggle when facing fibromyalgia
We asked our members how they felt emotionally after receiving their diagnosis, whether they felt renewed with determination now they had a name for their condition or despair for their future medical journey. Many members responded having felt several emotions at once and this is what they had to say:
78% of patients felt relieved by the diagnosis but this was coupled with 51% feeling a great deal of anxiety. This anxiety was coupled with shock and surprise, according to 19% of respondents. 36% reported feeling lost, confused and alone, 23% felt anger about their diagnosis, 25% of patients had the sensation of being misunderstood whilst only 20% felt discouraged.
Unfortunately, only 19% felt determined to fight the disease and 4% had confidence for the future while 16% felt despair.
How can diagnosing fibromyalgia be improved?
The above statistics demonstrate that many patients feel very relieved after receiving their diagnosis, even if this feeling of relief is also coupled with the anxiety, stress and feeling of uncertainty that partners with most chronic illness diagnoses. Carenity members were mostly happy with their doctor and how they received their diagnosis, but we asked them how they think the process could be improved and this is what they said.
Several patients mentioned the mental health aspect of dealing with a chronic illness, how they wished doctors hadn’t made them made feel like it was “just in their head”.
More support and information
The most resounding call for improvement concerning the diagnosis of fibromyalgia was the lack of explanation about the future and medication. Although the bulk of members were satisfied with their doctors, there was a resounding call from members for, “what the disease entails to be explained in layman’s terms”, “should be given more information” and “time should be taken to explain what the diagnosis meant”.
Many of the patients felt they did not get accurate information concerning what the future of the disease would entail and that they did not realise that the crippling symptoms they were feeling would carry on, “I’m lost now four years on, with no support’.
They feel there is a lack of support for patients suffering from fibromyalgia, with little to no follow-up care being offered to patients. Several respondents mentioned wanting such services as “pain management clinics” and “support groups”.
Also, patients were very unhappy with how long it took them to be diagnosed. Some claiming they even paid privately to see doctors, as “the waiting list for the NHS was too long”.
To conclude, it appears that most members were happy with their doctor’s support during diagnosis but more information and support should be offered after the diagnosis, concerning disease development and symptom management.
Many patients mentioned the fact that they were told their symptoms were just “in their heads” before they were diagnosed, so they want doctors to listen to and believe patients.
And what is your story?
Let's share our experiences and that of our loved ones in the comments on this article to improve diagnosis and help raise awareness of fibromyalgia!