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May is the globally recognized Fibromyalgia Awareness Month, with May 12th specifically designated as Fibromyalgia Awareness Day. But the people who battle this invisible disorder do so every single day, albeit at varying levels, and people in their lives aren’t even aware that their loved one is in pain. The purpose of not just the May 12th day, but the month, is to highlight the disorder, to bring awareness to it, and to educate people who suffer from it as well as the general public. 

What is fibromyalgia?

For a long time, doctors and the general public didn’t “believe” there was an underlying health issue for folks who suffered from what we now call fibromyalgia. My own doctors have admitted this to me, because I too suffer from fibromyalgia. When I was diagnosed almost twenty years ago, I had barely ever heard of this disorder, and there wasn’t much information available. Since that time, much has changed with more research, knowledge, as well as the main thing being that it is now a better understood and accepted disorder.

Fibromyalgia is not something that can be “cured” per se, and is therefore a long-term condition. It is a widespread musculoskeletal disorder that presents itself as pain and tenderness throughout the body, fatigue, sleep problems, and emotional distress. The National Institute of Arthritis and Musculoskeletal and Skin Diseases adds, “Scientists do not fully understand what causes it, but people with the disorder have an increased sensitivity to pain.”

Each person who has fibromyalgia can have varying levels of effects from it, while some are cripled with constant and daily pain and struggle to function in a normal life capacity, others may have mild flare-ups from time to time – and everything in between.

According to the Mayo Clinic, “The pain happens along with fatigue. It also can involve issues with sleep, memory and mood. Researchers think that fibromyalgia affects the way the brain and spinal cord process painful and nonpainful signals. That increases your overall sensitivity to pain. Symptoms often start after a triggering event. Triggers can include injuries, surgery, infections or emotional distress. Or the symptoms can build up over time, with no single event to trigger them.”

Symptoms of fibromyalgia

As mentioned, every individual’s fibromyalgia symptoms can vary greatly. For me personally, I, for the most part, have mild symptoms. I have periodic flare ups that manifest as widespread pain that, I’ll fully admit, are excruciating. I know of others who have fibromyalgia who can literally be debilitated with pain, and who struggle to perform daily tasks or even getting out of bed. So as you see, each person’s symptoms and day-to-day fibromyalgia issues can vary greatly.

So what are the symptoms? Well, widespread pain seems to be the one main symptom. The Mayo Clinic explains, “Fibromyalgia pain is often described as a constant dull ache that has lasted for at least three months. The pain is considered widespread if it happens on both sides of the body and above and below the waist.”

For me personally, yes I certainly have mild and dull pain that’s basically a daily norm, and to be honest it makes me sad that I don’t even think about that pain because it is now just a normal part of life. But when I do get flare ups, I cannot begin to explain the intensity of the pain. The worst part of it is that the pain makes no sense, and as a logical person, this is something that I really struggle with. As an example, the pain may start in my right knee only to move to my left elbow two minutes later to then move to my right ankle a minute after that. I find this ping-pong of pain to be so difficult because there’s no logical explanation except that my nerves are just ping-ponging pain within my body.

The logical question then for some is to ask if taking a Tylenol or Motrin isn’t the solution when I have these bouts of widespread fibro-pain flare ups. When I tell you that they make zero impact, I mean it. They could literally be Tic Tacs when I’m having a flare up because they don’t even take the edge off, that’s how intense the pain is. To put it into perspective, I have compared the fibro-pain flare ups I have experienced to active child birth when trying to explain the intensity of the pain. For me, and I am only speaking for me, when I get to this level of pain (which is often after trying to slow down or decrease the pain by taking a hot shower, by meditating, etc. and none of them work), the only solution my rheumatologist and I have come up with is for me to take a prescribed pain medication. In the past few years, I have only twice had to do so – fortunately.

Fatigue or an overwhelming feeling of being tired is the next symptom. The Mayo Clinic expands on this, “People with fibromyalgia often wake up tired, even though they say they sleep for a long time. Often, the pain disrupts sleep. Many people with fibromyalgia have other sleep disorders. These include restless leg syndrome and sleep apnea.”

Thinking-related troubles, or “fibro fog” is another symptom. This essentially just means that some fibromyalgia patients find it challenging or difficult to focus and pay attention to mental or physical tasks.

Trouble sleeping, as mentioned above, is also another symptom for fibromyalgia sufferers.

Other symptoms can include tenderness to touch; digestive issues (bloating or constipation are two examples); muscle and joint stiffness; a heightened sensitivity to light, noise, odors, and temperature; numbness or tingling in the arms and legs; as well as mental and focus issues revolving around anxiety and “fibro fog”.

Causes of fibromyalgia

No one really knows why a person develops fibromyalgia. The National Institute of Arthritis and Musculoskeletal and Skin Diseases states: “The cause of fibromyalgia is not known, but studies show that people with the disorder have an increased sensitivity to pain, so they feel pain when others do not. Brain imaging studies and other research have uncovered evidence of altered signaling in neural pathways that transmit and receive pain in people with fibromyalgia. These changes may also contribute to fatigue, sleep troubles, and ‘fibro fog’ issues that many people with the disorder experience.”

The Mayo clinic adds: “With fibromyalgia, many researchers think nerves are affected in a way that causes the brian and spinal cord to change. This change involves an irregular rise in levels of certain chemicals in the brain that signal them.”

Most sources and experts on this disorder state that women are more likely to be diagnosed than men are. People of all ages can be diagnosed, even children, but on average most who are diagnosed are middle aged. Chances also increase as one gets older. Likewise, just like people of all ages can be diagnosed with fibromyalgia, it can occur in people of all racial and ethnic backgrounds.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases also states that “fibromyalgia tends to run in families, so genetic factors are likely to contribute to the disorder, but little is known for sure about the specific genes involved. Researchers believe that environmental (nongenetic) factors also play a role in a person’s rheumatoid arthritis, or mental health problems, such as anxiety and depression.”

To compact the effects of fibromyalgia, a lot of people who are diagnosed with this disorder are also diagnosed with other diseases or disorders. Some of the most common are rheumatoid arthritis, chronic fatigue syndrome, systematic lupus erythematosus (known as lupus), migraine or other type of headaches, osteoarthritis, TMJ disorders, depression, anxiety, irritable bowel syndrome – as well as a number of others. I too was diagnosed with a second syndrome when I was diagnosed with fibromyalgia. Not only that, but when I have my regular visits every few months with my rheumatologist, she does extensive testing to make sure that I haven’t developed yet another disorder and or disease, like rheumatoid arthritis.

No cure is in sight

Sadly, there’s no cure in sight. For most it is about management of the disorder and treating the symptoms of it. In all of the research available, the specialists state that a mixture of exercise or other type of movement therapies, good sleep and a balanced diet combined with medications and behavioral / psychological therapies help those who suffer from fibromyalgia. As stated at the beginning of this article, every patient diagnosed with fibromyalgia suffers at varying levels from this disorder. Most work with a rheumatologist, if not a team of other doctors, and together they come up with a management plan for that individual.

*Disclaimer: All medical claims made in this article are based on the organizations cited and information provided by the cited sources. The information is general in nature and not specifically meant for any particular individual. You should always seek out medical assistance from a medical professional based on your individual needs and circumstances.

Resources:

The American College of Rheumatology: https://rheumatology.org/patients/fibromyalgia

The American Fibromyalgia Syndrome Association: https://www.fibromyalgiafund.org/

The Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

The National Institute of Arthritis and Musculoskeletal and Skin Diseases: https://www.niams.nih.gov/health-topics/fibromyalgia

The Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/4832-fibromyalgia

The CDC: https://www.cdc.gov/chronic-disease/fibromyalgia/index.html

Harvard Health Publishing: https://www.health.harvard.edu/pain/fibromyalgia-a-to-z