Have you ever wondered what it feels like to have fibromyalgia? For many, the experience looks something like this.
You might be fine one day and wake up the next in relentless pain from head-to-toe. Your brain can feel like it’s packed with cotton, where even the seemingly trivial activity of having a conversation is a challenge.
And when you try to figure out what is going on, you struggle to come up with patterns or a cause. You visit your doctor, with one test after another coming up negative. Without a visible origin, many fibromyalgia patients can go months or years without a diagnosis.
In this article, we will take an in-depth look at fibromyalgia: what it is, what causes it, and how researchers recommend finding relief.
What is fibromyalgia?
Fibromyalgia or fibromyalgia syndrome (FMS) is a chronic disorder marked by whole body aches and pains and extreme daytime fatigue. Symptoms can come and go, and often worsen over time. Many people with FMS experience symptoms so severe that it interferes with their daily lives.
Experts believe that FMS symptoms result from dysfunction of the central nervous system (CNS). The CNS consists of your brain, spinal cord, nerves, and the chemical messengers that they use to communicate.
The CNS is in charge of how we relate to the world. It plays a pivotal role in how we feel, emotionally and physically. From depression, anxiety, joy, and excitement, to pain sensation and our sleep-wake cycle, the CNS is central to every experience that we have.
Because the CNS is involved in seemingly endless processes in our bodies, fibromyalgia can feel and look different in everyone.
Fibromyalgia pain is unlike normal pain
Pain is one of the central symptoms of FMS. It can feel as if you have a sunburn when you don’t, or like you’ve pulled every muscle in your body. You may experience a pins-and-needles sensation, or like sharp electric shocks are running through you.
FMS pain is categorized into two buckets. The first is hyperalgesia, which is an increased response to normally painful stimuli. Someone stepping on your foot or a headache can be excruciating. It is easier for an FMS patient’s friends and family to understand this type of pain.
The second type of pain is allodynia, which is the experience of pain to normally painless stimuli. The pressure from a bra strap or the brush of the bedsheets may result in pain. A breeze from a nearby fan or heating vent may feel like it’s burning your skin. This type of pain is harder to explain or avoid.
Additional fibromyalgia symptoms
Feelings of physical exhaustion and mental sluggishness often plague people with FMS. Even when you get plenty of sleep, you can feel chronically sleep-deprived. For many, the excessive daytime sleepiness makes it hard to keep with the demands of daily life.
The cognitive effects of fibromyalgia can be just as challenging as the pain and fatigue. FMS-related cognitive difficulties are called “fibro fog,” and they can look different from one patient to the next. One patient reported forgetfulness, short-term memory loss, and trouble concentrating.
Other potential symptoms of fibromyalgia include:
- Poor quality sleep
- Sensory processing troubles (think oversensitivity to scents from perfumes or cleaning products or pain from loud noises)
- Tingling or numbness in the extremities
- Stiff, sore muscles
- Headaches and migraines
- Digestive discomfort, sometimes diagnosed as irritable bowel syndrome (IBS)
Remember, fibromyalgia symptoms can vary dramatically from one person to the next. Symptom severity ranges from mild to severe, with some patients experiencing bouts of intense FMS symptoms. The one silver lining for patients with fibromyalgia is that this condition does not shorten their life expectancy.
What causes fibromyalgia?
The cause of fibromyalgia remains unknown, although certain patterns have been found.
Women are at a higher risk of developing fibromyalgia than men. Most people develop FMS between the ages of 30 and 50, although some people will experience the beginning of fibromyalgia during adolescent or elderly years.
There appears to be a genetic component to FMS, meaning that those whose family members have fibromyalgia are more likely to develop it themselves. There is an eightfold risk of first-degree relatives of people with FMS also developing the condition.
Many fibromyalgia patients report an emotionally or physically traumatic event that initiates FMS symptoms. Some events that could result in fibromyalgia in susceptible people include physical injuries, illnesses, giving birth, and emotionally difficult events.
Research suggests that sleep disturbances may cause FMS or exacerbate its symptoms. In sleep laboratories, researchers have discovered that people living with fibromyalgia experience decreased restorative slow-wave sleep (SWS). Further supporting the theory that sleep abnormalities may play a role in FMS pathogenesis, healthy individuals who were woken at night in a way to replicate this loss of SWS experienced FMS symptoms, such as a heightened sensitivity to pain.
How is fibromyalgia diagnosed?
Diagnosing fibromyalgia is not straightforward as there is no fibromyalgia test. The difficulty is that FMS symptoms are not caused by inflammation or other damage that can be detected in current tests like bloodwork or x-rays. As a result, no laboratory test will reveal FMS.
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The first step taken by doctors is to rule out alternative conditions. People with other diseases, such as chronic fatigue syndrome, sleep disorders, and rheumatic disorders, exhibit similar symptoms as people with fibromyalgia.
Once your doctor has rejected other illnesses as the cause, they will compare your symptoms to a fibromyalgia symptoms checklist. Pain, fatigue, and cognitive difficulties are the three primary factors, but your doctor may use specific fibromyalgia tender points or other signs in their diagnosis. You may be asked to complete a checklist, such as this one.
What are the potential treatments for fibromyalgia?
With no known cure for fibromyalgia, treatments are designed to target symptoms and provide coping strategies. Fibromyalgia treatments involve a combination of pharmaceutical medications, lifestyle approaches, physical and psychological therapies, and complementary treatments.
Pharmaceuticals are not mandatory for managing fibromyalgia symptoms. In human clinical trials, drugs have had limited efficacy that is sometimes outweighed by side effects. Medication side effects include things like drowsiness, weight gain, and drug dependence.
Even though drugs have limited potential and carry risks of both short-term and long-term side effects, most fibromyalgia patients use at least two types of drugs.
The use of strong opioids and NSAIDs (non-steroidal anti-inflammatory drugs) is widespread despite lack of evidence that they work for FMS patients and dangerous adverse effects. While these drugs can help relieve the pain associated with certain acute and inflammatory pain conditions, this type of pain is different than that experienced by patients with fibromyalgia.
Certain antidepressant and anticonvulsant drugs have demonstrated potential in some human clinical trials. However, even the use of these drugs is not accepted worldwide.
While there are three FDA-approved fibromyalgia prescription medications in the United States (pregabalin, duloxetine, and milnacipran), these treatments were denied by the European Medical Agency due to insufficient efficacy when compared to placebo treatment.
When working with your doctor to determine what, if any, medications are right for you, be sure to carefully weigh the benefits with the adverse effects.
Regular exercise, relaxation techniques, and proper sleep may help to relieve pain, support a healthy mood, and combat fatigue.
According to human clinical trials, mild to moderate exercise is one of the best ways to cope with FMS. However, exercise can be challenging due to pain and low energy levels. Advice commonly given is to “start low and go slow.” Begin with low-intensity workouts and slowly build up to moderate intensity. The goal is to do an 30-60 minutes of aerobic exercise two to three times per week. Stretching and muscle strengthening have also been found to improve symptoms and quality of life.
Relaxation strategies can offer symptomatic improvement and enhanced feelings of wellbeing. A clinical trial of relaxation therapies identified yoga as having short-term beneficial effects on some key symptoms of FMS.
Working on sleep hygiene is another strategy that can help patients manage their symptoms, particularly chronic fatigue. To promote optimal sleep:
- Go to bed and wake up at the same time every day.
- Take a warm bath 30 minutes before bed to loosen stiff muscles and encourage mental relaxation.
- Reduce light and noise exposure using things like an eye mask or white noise.
- Keep your bedroom cool.
- Limit bright light exposure an hour or more before bed. This includes bright room lights and light from electronic devices.
- Set up a comfortable sleeping space with a nice mattress, pillows, and comforter.
Physical and psychological therapies
Many forms of therapy are beneficial for managing symptoms. Trained therapists can help patients come up with a workout routine, relaxation strategies, coping mechanisms, and more. In essence, therapists give you the tools to make meaningful lifestyle changes while supporting your emotional wellbeing.
Physical therapies have demonstrated promising results for FMS patients. Physiotherapists can teach you techniques to relieve stiffness and pain and improve mobility and overall health.
Talk therapy helps fibromyalgia patients manage the relationship between pain and wellbeing. Chronic pain and fatigue can lead to feelings of depression, anxiety, and frustration. In turn, negative emotional states can make it more challenging to live with pain. One form of psychotherapy is particularly promising: cognitive behavioural therapy (CBT). CBT has been found to yield modest benefits for fibromyalgia patients in multiple human clinical trials.
Complementary therapies appear to help some people, but not others. The upside of these therapies is that they tend to carry few adverse effects while offering potential benefits. Nevertheless, evidence of their effectiveness in clinical trials is limited. Some fibromyalgia patients have benefitted from:
- Supplements, including omega-3 fatty acids and topicals like capsaicin cream
Other tools to help you live with fibromyalgia
Learning to manage fibromyalgia symptoms and improve quality of life is an ongoing process. Finding the right treatments is challenging, particularly when you are experiencing pain, fatigue, and fibro fog that make it hard to do much of anything. Fortunately, there are programs and groups available to help.
The first of these are support groups for people with FMS. Having a community of people who understand what you’re going through can help you adjust to living with a chronic illness. At times, you may even learn about a promising new strategy or treatment that someone in the group is trying that could benefit you as well.
Next, there are pain management clinics and other programs designed to help you find the right treatments. They utilize a network of professionals, such as occupational therapists, talk therapists, employment advisors, and pain consultants, to make the process of finding assistance easier. Talk to your doctor or search online to find programs near you.
Living with fibromyalgia is challenging. Work with your doctors and alternative therapy practitioners to find treatments that help you. Every person is different, and what works for one person may offer little to no benefit to another. If you find that you are feeling alone or struggling to manage your condition, look for a local or online support group. Talking to others who understand what you’re going through can be incredibly beneficial.