Living With Chronic Pain That Even Doctors Don’t Believe - This Is Fibromyalgia
Fibromyalgia has no known cause or cure, and its symptoms - such as chronic fatigue, depression and brain fog - can be mistaken for other conditions like arthritic or autoimmune diseases. Four people share what it’s like to live with it, and the challenges of getting a diagnosis.
This is what living with fibromyalgia is like
Imagine doctors insisting that you are fine, when your body is engulfed in pain. Four fibromyalgia patients tell CNA Insider about their struggles with this invisible illness and how they draw strength from their suffering.
At first glance, Ong Jin Jie is an upbeat 29-year-old multi-hyphenate. He is co-founder of a media agency, an adjunct lecturer at two polytechnics, a property consultant, a podcast host and a songwriter. Few would suspect that he is also a victim of chronic pain.
His symptoms started in 2019 with mild body aches, fatigue and fever, which later escalated into an intense, to-the-bone pain that sent him looking for answers. He pored over academic papers on autoimmune diseases and invisible illnesses, experimented with acupuncture, cupping, herbal remedies and other alternative treatments, and even sought spiritual healing from churches and temples. But nothing hit the mark.
Everything You Need to Know About Fibromyalgia
Your quality of life can be affected when you live with pain, fatigue, and other fibromyalgia symptoms on a daily basis. But despite misunderstandings, you find help managing this chronic condition.
Fibromyalgia is a long-term, or chronic, condition. It causes symptoms such as:
- musculoskeletal pain, or pain in the muscles and bones
- tenderness
- general fatigue
- sleep and cognitive disturbances
This condition can be hard to understand, even for healthcare professionals. Its symptoms mimic those of other conditions, and there are no tests to definitively confirm a diagnosis. As a result, fibromyalgia is often misdiagnosed. In the past, some healthcare professionals even questioned whether fibromyalgia was real. Today, it’s much better understood.
Fibromyalgia
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.
Symptoms often begin after an event, such as physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. Women are more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help. The primary symptoms of fibromyalgia include:
- Widespread pain. The pain associated with fibromyalgia often is described as a constant dull ache that has lasted for at least three months. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
- Fatigue. People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is often disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea.
- Cognitive difficulties. A symptom commonly referred to as "fibro fog" impairs the ability to focus, pay attention and concentrate on mental tasks.
Fibromyalgia
Fibromyalgia is a chronic (long-lasting) disorder that causes pain and tenderness throughout the body, as well as fatigue and trouble sleeping. Scientists do not fully understand what causes it, but people with the disorder have an increased sensitivity to pain. There is no cure for fibromyalgia, but doctors and other health care providers can help manage and treat the symptoms. Treatment typically involves a combination of exercise or other movement therapies, psychological and behavioral therapy, and medications.
Who Gets Fibromyalgia?
Anyone can get fibromyalgia, but more women get it than men. It can affect people of any age, even children, but it usually starts in middle age, and the chance of having it increases as you get older. It occurs in people of all racial and ethnic backgrounds.
If you have other diseases, especially rheumatic diseases, mood disorders, or conditions that cause pain, you may be more likely to have fibromyalgia. These diseases include:
- Rheumatoid arthritis
- Systemic lupus erythematosus (commonly called lupus)
- Ankylosing spondylitis
- Osteoarthritis
- Depression or anxiety
- Chronic back pain
- Irritable bowel syndrome
7 Fibromyalgia Symptoms In Women
Lady Gaga suffers from this chronic pain condition
In Lady Gaga’s Netflix documentary, Gaga: Five Foot Two, the first scene shows the singer’s muscles being stretched and prodded on a massage table. It’s one of the ways she deals with fibromyalgia, a condition that causes chronic pain all over the body. It’s not known what causes the condition, and there’s no cure, which can make getting a diagnosis and managing the pain incredibly frustrating. Gaga addresses her struggles with the condition several times throughout the film, and has talked about it openly in the last year.
When a celebrity as big as Gaga talks about fibromyalgia, it brings major awareness to the condition, but it’s still very misunderstood. “Fibromyalgia is poorly identified by most people, even those in medicine, and there’s no specific test that can determine someone has it,” says Charles Kim, M.D., assistant professor in the department of rehabilitative medicine at NYU School of Medicine and pain management specialist at Langone’s Rusk Rehabilitation. “We have to test for other things and rule those out; it’s a diagnosis of exclusion.”
Fibromyalgia typically affects women in their twenties and thirties, and it’s more common in women than men, says Kim, though researchers don’t know why. Because it’s tricky to diagnose, it’s important to understand the symptoms so you can recognize it and suggest the possibility to your doctor. Here, the most common symptoms of fibromyalgia, and how to deal with them:
- Widespread pain
- Fatigue
- Migraines
- Sleep issues
- Brain fog
- Depression and anxiety
- Irritable bowel syndrome
Fibromyalgia
The nine possible pain sites of fibromyalgia according to the American Pain Society
Fibromyalgia is a medical syndrome which causes chronic widespread pain, accompanied by fatigue, waking unrefreshed, and cognitive symptoms. Other symptoms can include headaches, lower abdominal pain or cramps, and depression. People with fibromyalgia can also experience insomnia and a general hypersensitivity. The cause of fibromyalgia is unknown but is believed to involve a combination of genetic and environmental factors. Environmental factors may include psychological stress, trauma, and certain infections. Since the pain appears to result from processes in the central nervous system, the condition is referred to as a "central sensitization syndrome".
Fibromyalgia was first defined in 1990, with updated criteria in 2011, 2016, 2019. The term "fibromyalgia" is from Neo-Latin fibro-, meaning "fibrous tissues", Greek μυο- myo-, "muscle", and Greek άλγος algos, "pain"; thus, the term literally means "muscle and fibrous connective tissue pain". Fibromyalgia is estimated to affect 2–4% of the population. Women are affected about twice as often as men. Rates appear similar in different areas of the world and among different cultures.
The treatment of fibromyalgia is symptomatic and multidisciplinary. The European Alliance of Associations for Rheumatology strongly recommends aerobic and strengthening exercise. Weak recommendations are given to mindfulness, psychotherapy, acupuncture, hydrotherapy, and meditative exercise such as qigong, yoga, and tai chi. The use of medication in the treatment of fibromyalgia is debated although antidepressants can improve quality of life. Common helpful medications include other serotonin–norepinephrine reuptake inhibitors, nonsteroidal anti-inflammatory drugs, and muscle relaxants. Q10 coenzyme and vitamin D supplements may reduce pain and improve quality of life. While fibromyalgia is persistent in nearly all patients, it does not result in death or tissue damage.
