#1 But you look fine! What is fibromyalgia.

#aboutfibro #fibroeducation Aug 12, 2021

As a rheumatologist, I see patients with fibromyalgia daily. It is probably one of the most challenging disorders to explain to my patients. Over the years, this condition has changed names. It does not have blood or imaging tests to confirm it. The treatment is far from straightforward and often unhelpful. There are even some doctors and patients who do not believe it is real.

Our society does not doubt the existence of migraines, depression, and many other conditions that do not have confirmatory tests. Yet, this lack of tests often triggers suspicion and judgment when it comes to fibromyalgia. Your loved ones may not “believe in” fibromyalgia. Relatives and friends often offer my patients well-meant advice on how to feel better and sometimes even go so far as to say: “But you don't look sick!” “Just shake it off!” “It is all in your head!” “How long can you feel this bad?”
Although the theories of what fibromyalgia is have evolved over time, one remains the same – it is a pain disorder. With newer research and understanding about how our bodies work, we are gaining more knowledge about this condition and its treatment.

This is how I explain fibro to my patients.

Fibromyalgia is real. It is not imaginary. Your pain is real.

Fibromyalgia is a brain processing disorder. Your brain processes everything your body does, including pain. In fibromyalgia, the brain processes pain incorrectly.
Every bit of your body, inside and out, is covered in nerve cells – your skin, muscles, joints, hair, all internal organs. These nerve cells send information from your body to the brain. Your brain knows if you are hungry, thirsty, hot, cold, or wet, it knows if you are lying down or upside down or if a fly landed on your arm. Your brain also knows precisely where you have any discomfort – if you have an itch, tight shoe, a pimple, or pain. Every type of pain, from a simple toothache to complex belly pain, ingrown toenail to sunburn, every tender joint, muscle sprain, or headache is processed by your brain.

If you do not have daily pain and stub a toe, the brain will let you know. In a few hours or days, the toe pain resolves, and your brain enables you to forget about it. This is an example of acute pain.

If you have a chronic pain condition such as recurrent migraines, degenerative disk disease, arthritis, or nagging pain from an old injury or fracture, really any prolonged or frequent pain, the brain does not forget to remind you of it.
In some patients, this chronic pain and other life events trigger a pain processing problem.
As the brain practices this daily chronic pain reminder, it becomes excellent in recognizing pain. Practice makes perfect. In fibromyalgia, your brain is extremely good at telling you that you have pain. Your brain becomes a pain expert. Like an aspiring Olympic athlete, your brain practices more and more and becomes “obsessed” with pain.

Pain is stressful. If you have pain, a cascade of events activates our primitive survival instincts to protect us from danger. The part of the nervous system, called the sympathetic nervous system, is responsible for flight or fight response and is designed to protect you from injury and death. Pain is an excellent trigger of that system.
In patients with fibromyalgia, the sympathetic nervous system is turned on even if there is no actual emergency.

Your brain is continuously receiving impulses to check for possible danger. Over time, it starts recognizing other sensations as discomfort, and ordinary feelings become obnoxiously uncomfortable: light touch, bright lights, loud sounds. With time, if left untreated, more and more nerve cells all over the body send signals that are misinterpreted. Pain and other sensations become more and more exaggerated and amplified.

This turned-up nervous system is called central sensitization syndrome – a central nervous system (the brain and spinal cord) sensitive to stimuli causing symptoms.
As the nervous system continues to be activated, the patients may start accumulating other symptoms besides pain: dizziness, numbness/tingling, IBS, interstitial cystitis, restless leg syndrome, etc. As your brain does all this extra work, it wastes energy and causes horrible fatigue.

If you have fibromyalgia, think of all the different symptoms you are experiencing.

In my next blog post, I will explain fibromyalgia symptoms and how they are related to central sensitization syndrome.

 Go to Blog post #2

Get a "Fibromyalgia is real" postcard

I created a postcard to share information about fibromyalgia. It describes what it is, the symptoms, and lists "I would like you to know" facts that many of my patients want their family or friends to remember. Do your people know that a hug may hurt you, but you are too embarrassed to tell them? That activities with noise may overwhelm you and cause a flare? If you push too hard, you may crash and be in pain for days after? That you already know everything you need to know about fibro and do not need yet another well-meant advice?
You can download the card and print it at home or send it to any print shop that prints cards.

DISCLAIMER: This blog provides information only, and does not provide any medical or psychological services or advice. None of the content on this blog prevents, cures or treats any mental or medical condition. You are responsible for your own physical, mental and emotional well-being, decisions, choices, actions and results.


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