‘Every joint, muscle, nerve started aching’: People share their struggles living with fibromyalgia

Eventually, she joined physiotherapy sessions, which provided some relief. She also incorporated exercise into her daily routine and tried to prioritise rest and self-care, which helped her manage her ailment, which was diagnosed as fibromyalgia.

Similarly, Arushi Lohiya, a marketing and branding consultant, developed fibromyalgia in 2015, after she felt intense headaches multiple times a day, which “incapacitated me”. “There was acute pain in my hip, which made it impossible for me to sit in one place. Subsequently, every joint, muscle, and nerve started aching and rendered me immobile. I had to quit my job as I was unable to perform even basic tasks like writing, brushing my teeth, and combing my hair,” she recollected.

However, her condition only made her stronger, and she decided to help others with the condition setting up India Fibromyalgia Foundation, which is dedicated to creating awareness and advocating for patients with the illness.

What is fibromyalgia?

According to a study published in the Dialogues in Clinical Neuroscience, fibromyalgia is characterised by chronic widespread pain, unrefreshing sleep, physical exhaustion, and cognitive difficulties. It occurs in all populations throughout the world with a prevalence between 2-4% in general populations.

Elucidating, Dr Ilavaran S, Orthopaedic Surgeon, Apollo Spectra Hospital, Chennai said that the brain and spinal cords of fibromyalgia patients change as a result of ongoing nerve stimulation. “This alteration entails an aberrant elevation of specific pain-signaling molecules in the brain. As a result, the brain’s pain receptors appear to form a kind of painful memory and grow more sensitive, causing them to overreact to both painful and nonpainful signals. An event that results in either physical stress or emotional (psychological) stress is frequently what sets off fibromyalgia,” he told indianexpress.com.

Along similar lines, Vishnu Priya Bhagirath, Counselling Psychologist said that the pain associated with fibromyalgia is often described as a deep, persistent ache that is accompanied by tenderness in specific points on the body known as “trigger points”. “Cognitive dysfunction or ‘fibro-fog’ can cause difficulty in concentrating, memory issues and trouble with word recall,” she said.

Other factors which can lead to fibromyalgia are a family history of the condition, psychological stress and trauma, musculoskeletal conditions and fatigue.

However, Saumya Pahwa, Consultant Clinical Psychologist, said, “Fibromyalgia is a contested diagnosis and many health professionals believe it does not exist as a true disease, and that it is in the patient’s minds, making it psychological or psycho-somatic in nature. ” She added that fibromyalgia is more commonly seen in women than men, possible due to the way both genders feel and react to pain as well as societal expectations. “It can also be triggered due to past trauma, abuse and domestic violence, especially in women,” she continued.

Adding to this, Vishnu Priya said, “One possible cause of fibromyalgia is abnormal pain processing in the brain and spinal cord, which can result in an exaggerated response to pain signals.”

Diagnosis of fibromyalgia

Even a modest amount of pressure on tender spots causes discomfort. (Source: Freepik)

Physicians typically rely on a combination of patient history, physical examination, and laboratory tests to make an accurate diagnosis.

“Typically, the disease is accompanied by 18 painful spots. Even a modest amount of pressure on tender spots causes discomfort. A doctor will use their fingertip to push the spots on the body to perform a tender point examination. They’ll use enough force and inquire as to whether the patient is in pain. They will also rule out associated conditions such as tension and migraine headaches, irritable bowel syndrome, restless leg syndrome, chronic fatigue, lupus and rheumatoid arthritis,” said Dr Ilavaran.

While there is no known cure for fibromyalgia, quality treatment can provide significant relief and remission from pain. This includes a combination of medication and lifestyle modifications such as:

*Get plenty of sleep: People with fibromyalgia frequently experience daytime fatigue and a drowsiness in the morning. One can improve sleeping patterns by avoiding coffee at night, keeping the room at a cool, comfortable temperature and turning off electronic devices before sleeping.

*Exercise regularly: Although fibromyalgia can make exercise challenging, maintaining an active lifestyle is an excellent way to manage the condition. One does not have to undertake strenuous activity. Start out by swimming, strolling or engaging in low-impact aerobics, and gradually increase the length and intensity of the workouts.

*Medications: Pain relievers such as acetaminophen, ibuprofen and antidepressants like Duloxetine have been shown to be helpful. Anti-seizure medications such as Gabapentin are known to bring relief in some patients.

*Therapies: Physical therapy which included exercises to condition and strengthen muscle groups, occupational therapy and psychotherapy such as cognitive behavioral therapy helps with mental health.

*Self-care strategies: A healthy diet, meditation and yoga can help.