What Is Fibromyalgia?
When you first hear those words, ‘you have fibromyalgia,’ there are likely many thoughts, feelings, and emotions that are coursing through your mind.
You may wonder what that is, why you have it, will you ever get better, what your life will be like now. You may worry about how this will affect your job, family, hobbies, your life.
You may even feel a little relief to finally have a name to put to all these frustrating symptoms. You may grieve your former life, feeling like you will never be the same person again.
You will probably feel a hefty combination of a lot of emotions all at once, and for a good reason.
None of these feelings are wrong, none of these feelings are right either. There simply is no right or wrong. Each of us has to deal with our diagnosis in our own way. Just as each of us has to then treat and learn to live with this illness in our own way.
Who Gets Fibromyalgia?
Fibromyalgia is one of the most common types of chronic pain disorders. Estimations show that between 200 million to 400 million people worldwide have fibromyalgia.
It is known that more women are affected by fibromyalgia than men, and most are diagnosed at the age of 30 or older. But it is important to remember there are men with fibromyalgia and there are kids and teens with fibromyalgia. Do not dismiss your symptoms, or those of your loved one, because you or they do not fit into the typical criteria for someone with this illness.
What Is Fibromyalgia Exactly?
According to The Mayo Clinic, “researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals."
It has also been found that “repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals."
What does this mean? Simply put, we feel more pain than the average healthy person. Our body interprets pressure as pain; our body interprets slight pain as extreme pain. Our body even feels pain when there is no reason for it at all.
All of that said, many other symptoms are not explained by this.
The Symptoms of Fibromyalgia
There is a long list of over 100 possible symptoms, along with companion illnesses, which are frequently associated with fibromyalgia.
Some of the more common symptoms are:
- Persistent pain throughout the body
- Fatigue
- Cognitive fatigue, also known as brain fog
- Joint stiffness
- Muscle stiffness and spasms
- Sleep disturbances
- Anxiety, depression, or mood swings
- Irritable bowel syndrome (IBS)
- Jaw pain, or Temporomandibular Joint (TMJ) disorders
- Headaches
- Hormonal imbalances
- Sensitivity to lights, sounds, cold, and heat
- Skin sensitivities
- Frequent or painful urination
The Process of Being Diagnosed With Fibromyalgia
The road to getting diagnosed with fibromyalgia can be different for each individual. But for many, this is a long, bumpy path. I personally have had fibromyalgia since childhood, but I was not diagnosed until I was 22.
I spent years telling different doctors that I hurt, that I just felt unwell. They would find some small thing to blame it on or ignore me altogether. I had convinced myself many of my symptoms were normal, or simply in my head.
But as I got older, the symptoms became worse and more persistent. I finally had to accept that there was something wrong and I needed to find out what it was. I went to a new doctor. I explained to him all of my symptoms and how long they had been going on. He was the first one to really hear me, the first one to recognize something more serious than growing pains, a cold, or the flu.
After doing a number of tests at his office, and they all came back negative, he sent me to a rheumatologist. The rheumatologist also listened to all of my many symptoms and ran a plethora of more blood tests. Once again, all the blood tests came back negative. She then did the tender point test, and when I was sore in all of the 18 points, she gave me the diagnosis of fibromyalgia.
The tender point test, also called the pressure point test, is no longer considered the definitive test for fibromyalgia as it once was. The Mayo Clinic explains that the reason for this is because “fibromyalgia symptoms can come and go so that a person might have 11 tender spots one day but only eight tender spots on another day. And many family doctors were uncertain about how much pressure to apply during a tender point exam. While specialists or researchers may still use tender points, an alternative set of guidelines has been developed for doctors to use in general practice."
How Is Fibromyalgia Diagnosed?
There is a new diagnostic criterion that doctors consider, and this includes:
- Widespread pain that lasts for at least three months
- Accompanied with other symptoms such as fatigue, waking up tired, and mental fogginess
- No other underlying condition that could explain the symptoms
Your doctor will want to ensure that your symptoms are not caused by another underlying problem or condition that has similar symptoms. This is why your doctors will likely do a lot of blood tests, ask you many questions, and even perform a physical exam.
They will look for rheumatic diseases such as rheumatoid arthritis, Sjogren's syndrome, and lupus, as these may initially present with generalized aches and pain.
Mental health problems, such as depression and anxiety, will frequently cause generalized aches and pain that mimic the beginning stages of fibromyalgia.
They may also look for neurological disorders, such as multiple sclerosis and myasthenia gravis. This is due to the fact that fibromyalgia causes numbness and tingling for some, mimicking symptoms of these neurological disorders.
It is important to make sure that these illnesses are not the cause of your current symptoms.
What Causes Fibromyalgia?
While it is not fully understood what the exact cause of fibromyalgia is, there are a number of factors that may contribute to the origin of this mysterious illness.
- Genetics. There seems to be a genetic component to fibromyalgia, as it is frequently seen in family groups, although it is generally not considered hereditary.
- Certain infections. Some infections, such as hepatitis C; Epstein-Barr virus; Lyme disease; and parvovirus, have been seen to trigger fibromyalgia.
- Injury or physical trauma. In many cases, injuries, such as a car accident, can trigger the onset of fibromyalgia.
- Emotional trauma. In some cases, psychological trauma, severe emotional stress, or abuse, as well as Post Traumatic Stress Disorder (PTSD) seem to be contributing factors for fibromyalgia.
- Autoimmune Disorders. Fibromyalgia is frequently seen in people that already have an autoimmune disorder, such as Rheumatoid Arthritis; lupus; osteoarthritis; and ankylosing spondylitis.
In many cases, people that develop fibromyalgia have more than one of the above factors.
How Is Fibromyalgia Treated?
There is a variety of ways to treat fibromyalgia. It is important to remember that each individual is different and must find the right fibromyalgia treatment for them. In most instances, a mixture of things is needed to treat the many symptoms of fibromyalgia.
Before trying a new medication or other forms of treatments, it is best to talk with your doctor and do research to ensure that it will not interfere with other medications or any other conditions that you have.
Some of the most common methods that are used to treat fibromyalgia are:
- Medication. A number of medications may help to address some of the symptoms of fibromyalgia. There are both prescription and over the counter pain medications. There are also some medications initially developed for depression and seizure disorders that have been successful in lessening the pain of fibromyalgia for some. Muscle relaxers may also be beneficial in reducing muscle stiffness and help you to improve the amount and quality of sleep that you get.
- Vitamins and Supplements. It is common for many with fibromyalgia to be deficient in some necessary vitamins and minerals. A blood test can check for vitamin and mineral deficiencies. Many have found relief from some of their symptoms when they take a supplement for Vitamin D, magnesium, or potassium. Some have also benefited from taking 5-Hydroxytryptophan (5-HTP) and S-Adenosyl-L-methionine (SAMe). These natural supplements have been helpful in some cases to decrease many of the symptoms of fibromyalgia. A natural sleep aid may also be beneficial for some to get better rest, which will in turn help relieve a number of symptoms, including pain, fatigue, brain fog, and promotes a better mood.
- Exercise. Exercise and fibromyalgia do not seem to mix well at first glance. But it has been proven time and again that some form of exercise is necessary to successfully treat fibromyalgia. Many have seen the benefits of gentle stretching exercises, such as Pilates. Others have found resistance training to be helpful in reducing pain, in addition to improving their overall wellbeing. Water aerobics has proven beneficial for many as well. It is believed to be even more helpful than other exercises at improving pain levels, sleep, overall mood, and increasing agility.
- Heat and/or Cold. Using heating pads or blankets, hot water bottles, or ice packs have been helpful for many. Different people are affected differently by heat and cold, so you have to find what will best work for you.
- Lifestyle Changes. Many lifestyle changes can make a big difference in the number of symptoms that you have. Learning to pace your activities is an absolutely vital key to successfully living with fibromyalgia. Take steps to improve your sleep habits. Reduce stress and learn methods to better cope with stress as it occurs. Journaling, breathing exercises, practicing mindfulness, and participating in enjoyable activities can help with stress and ultimately lessen fibromyalgia symptoms.
Fibromyalgia Treatment Options
- Therapy. Physical therapy (PT) can assist in increasing your strength, flexibility, as well as energy through exercises. Cognitive Behavioral Therapy (CBT) is a form of therapy that may help you learn ways to better cope with stress, which can be a major factor in many of the symptoms of fibromyalgia. CBT may be especially beneficial for those that also have mood disorders, or that have developed fibromyalgia after experiencing some emotional trauma. Occupational Therapy (OT) may help you to make adjustments to your work area or your home and learn how to perform everyday activities in a way that will cause you less pain.
- Diet. There are a number of foods that have been found to increase pain and stomach and digestive issues for many. Avoiding trigger foods and increasing your intake of healthy foods that lower inflammation and pain can be a big help in treating fibromyalgia.
- Alternative treatments. Some have found relief pursuing what may be considered alternative treatment. Acupuncture, massage, and chiropractic care have all been helpful for some.
While not a treatment per say, it can be immensely beneficial to find others with fibromyalgia to talk to. There may be support groups in your area, and there are also a number of online support groups, as well as groups and individuals on social media. Finding others with fibromyalgia can help with answering questions, finding support and advice, and provide you with a place to vent your frustrations with your new life.
Can Fibromyalgia be Cured?
Sadly, for the time being, there is no known cure for fibromyalgia. Thankfully though, research into this complex illness continues.
Some recent studies published in Scientific Reports, details a study of something referred to as explosive synchronization (ES) in human brain data, and this may give insight into the cause of chronic pain disorders, such as fibromyalgia.
"For the first time, this research shows that the hypersensitivity experienced by chronic pain patients may result from hypersensitive brain networks," according to Richard Harris, Ph.D., associate professor of anesthesiology at Michigan Medicine with the Chronic Pain and Fatigue Research Center. "The subjects had conditions similar to other networks that undergo explosive synchronization."
In ES, a small stimulus can lead to a coordinated reaction within the network, similar to the reaction of a power grid failure, which rapidly turns things off, or that of a seizure, which rapidly turns things on. This is thought to be a promising lead to a better understanding of how a person develops fibromyalgia.
"As opposed to the normal process of gradually linking up different centers in the brain after a stimulus, chronic pain patients have conditions that predispose them to linking up in an abrupt, explosive manner," says UnCheol Lee, Ph.D., a physicist and assistant professor of anesthesiology at Michigan Medicine.
Researchers recorded the electrical activity in the brains of 10 females with fibromyalgia. Results showed hypersensitive and unstable brain networks. They also found a strong correlation between the degree of ES conditions and the self-reported intensity of chronic pain that the patients reported during the EEG testings.
After using computer models of brain activity to compare the responses of fibromyalgia patients to the normal condition, researchers discovered that the fibromyalgia model was more sensitive to electrical stimulation than the model without ES characteristics.
What does all of this mean? It could potentially help guide future treatments for fibromyalgia!
Learning to Live With Fibromyalgia
Life with fibromyalgia is undoubtedly a challenge, and it would be dishonest to pretend otherwise. But there are ways to reduce the hold that fibromyalgia has over your life.
I have found balance to be crucial in living with fibromyalgia. There needs to be balance between accepting this illness and holding onto hope of finding relief. There needs to be balance between activity and rest. There needs to be balance between being realistic and having a positive outlook. There needs to be balance in taking care of your health and caring for your family and friends.
Life with fibromyalgia is like a whole new world for many people. It requires a new way of thinking and doing things. This does not automatically have to be a bad thing though. A change in focus and perspective can be positive.
Dwelling on the negative aspects of fibromyalgia, on the past, or on how much better it seems others have it, will not help you any. That is not to say thinking positive thoughts will cure you, it won’t, but it can make coping with your new circumstances easier. A joyful outlook can also improve your mood and reduce stress.
Receiving the diagnosis of fibromyalgia can be alarming. It will do you well to remember that there are ways to cope and that you are never alone. There are millions of warriors around the world are successfully living their lives with fibromyalgia and you can too!