First, let's get the technical stuff out of the way.
There are a few different schools of thought among doctors and scientists, but the common thread to explain what causes Fibromyalgia is a hyperactivity of the central nervous system. It's as if the "volume control" is set too high on pain processing. [Arthritis Foundation: Fibromyalgia Causes] It overlaps and is associated with a variety of other issues, including chronic fatigue syndrome, irritable bowel syndrome, post-traumatic stress disorder, and more. [Arthritis Research and Therapy]
Now, in simpler terms:
Fibromyalgia is pain. Lots of pain. All over the body. And tenderness to touch. Every person with Fibromyalgia experiences pain and tenderness. Multiple other symptoms are associated with Fibromyalgia as well, but not every person with Fibro experiences all those other symptoms. For example, many, but not all people with Fibro also have irritable bowel symptoms (gas, bloating, etc.) Many, but not all people also have restless leg syndrome. And the list goes on.
The pain experienced by people with Fibro is best explained by comparing it with the symptoms of the Flu. Remember the last time you had the Flu. Remember the achiness you felt in your muscles, the headache, the nausea, the pure exhaustion you felt. Now, imagine that feeling never going away. Imagine living with that feeling every day. All day.
That is what Fibromyalgia IS. Let me explain what Fibromyalgia is NOT.
Fibromyalgia is not fake. It's not made up. It's not something doctors use to label a bunch of symptoms that they can't figure out. Fibromyalgia is not something people use to get attention or sympathy or a handicap parking tag. It's not something we use as an excuse to not work and to lay around the house doing nothing all day. Fibromyalgia is very real. That it is not well understood doesn't make it any less real.
Perhaps this will help:
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| Brain scans of a healthy patient and of one with Fibromyalgia. |
The blue coloration on the healthy brain demonstrates normal electrical activity. The additional red and white coloration on the brain scan of a fibromyalgia patient represents over-electrified brain regions. The brain is actually the “volt meter” that tells us how much pain we are experiencing, an over electrified brain will amplify incoming electrical pain signals from every nerve in the body. For this reason, fibromyalgia patients are much more sensitive to pain. [Sponaugle Wellness Institute]There it is, in red, white, and blue. The brain of a person with Fibromyalgia responds differently to pain stimuli than the brain of a healthy person. So, you can tell us that it's all in our heads, and we'll show you this brain scan and say, "Yes. Yes, it is."
Fibromyalgia is not only pain and tenderness. Those symptoms are experienced by everyone who has Fibro, but each of those people also experiences a broad range of other symptoms, and each person's symptoms are different. Some people have Irritable Bowel Syndrome, and some don't. Some people notice blurred vision, and some don't. Some people suffer depression, and some don't. This is what makes Fibromyalgia so difficult to diagnose and treat, because the symptoms people present with often mimic other conditions, so a diagnosis of Fibromyalgia is only reached through extensive testing and review of the patient's history and symptoms, in order to be 100% sure they're not suffering from something else, such as Lupus or Lime disease or Rheumatoid Arthritis, for example.
Fibromyalgia is not curable. At least, not at the present time. It can be treated by many different methods with varying degrees of impact on a person's symptoms. It can be masked or even minimized to the point where the symptoms are barely noticeable. But it cannot be cured. I've read and heard many people say they know someone who took this drug, or did this exercise, or used this essential oil, or followed this certain diet plan, and their Fibromyalgia was cured. Listen, apart from the miraculous intervention of God, Fibro cannot be cured. If anyone tells you they've been cured by some other method, they are either lying, or they never had Fibromyalgia in the first place. For this reason, please don't suggest a diet you've heard of or an exercise your friend tried or an essential oil you know worked for your aunt's arthritic knee. Most of us will stick with our physician's treatment plan. If we want to try something alternative, we'll come to you, or we'll just try it on our own.
Fibromyalgia is not like the headache you've had all day. It's not like the sleepless night you had last night. It's not like the leg cramp you had after you played softball on Saturday. We know you mean well, but if you ask us how we're doing/feeling, and we tell you the symptoms we're dealing with at that time, please don't follow that up with, "I know how you feel. This headache just won't go away today. I've tried everything!" We know you're trying to relate and to sympathize, but it comes off as dismissive, and it leaves us feeling like you weren't really interested in how we're doing/feeling. If your headache never goes away, and you suffer with it every day for the rest of your life, well, THEN you can tell us you know how we feel, and we can commiserate together. That is not to say we don't care about the fact you're in pain at that moment, because we do. In fact, we may even ask YOU how you are doing/feeling after you've asked us, then you are welcome to share your pain, because we definitely know how you feel.
Fibromyalgia cannot be "fixed" by getting more or less sleep, or losing weight, or exercising more, or meditating, or being more positive, or getting out of the house. People who suggest these types of "fixes" usually are those who don't think Fibro is a real thing. They tend to think it's in our heads, and if we'd just do something about it we'd be fine. Laziness is a vice they often attribute to us, though they usually wouldn't say that aloud. They'll hint at it, though. I've been told that if I would just lose weight and be more active, then I would feel better, and that I sleep way too much, which can't possibly help. Losing weight and being more active probably would help some, but it's not a cure, and there is even a good chance it wouldn't change anything.
Fun fact: you may not believe Fibromyalgia is a real condition, but I feel real pain, I deal with real memory lapses, I fight real fatigue, and I suffer real stomach cramps. It's real to me, and if you care about me, you will be supportive and caring and helpful rather than dismissive and suggesting I'm lazy by responding to my complaints with "If you'd get some more exercise, you'd be fine."
On that note, what is Fibromyalgia for me?
The short version is that in addition to the widespread pain and tenderness, I struggle with at least 20 other symptoms. Some go hand-in-hand. I don't experience all the symptoms every day, nor do I experience all the symptoms altogether at the same time. But I do experience symptoms every day to varying degrees.
Below is my personal Fibromyalgia map, showing all the locations on my body that I experience pain, as well as listing the symptoms associated with specific areas. I'll explain each symptom in greater detail following the map, and I hope that if you are someone who cares for me you will take the time to gain an understanding of what I deal with. I'm not looking for pity. Just to have my family and friends understand me, because I often feel as though most don't really understand, and maybe even get tired of hearing me complain. I also know there are at least a few who don't give much credence to the Fibromyalgia diagnosis, and that's fine, but I'd like them to at least understand my very real struggle, whether they accept my symptoms under that diagnosis or not. Further, I hope that this will also serve to help anyone else who may have a friend or loved one dealing with this, too. be better able to sympathize and understand them, too.
Without further ado, here is my Fibromyalgia map:
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| My Fibro Map: click to enlarge |
