How Can I Explain Fibromyalgia?

Getting People to Understand

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Question:

"Most of the people in my life don't know anything about fibromyalgia. I've tried to explain it, but it's so complicated that I just don't know how to do it, especially when my fibro fog is bad.

How can I explain fibromyalgia in a way that people will understand?"

Answer:

Fibromyalgia can definitely be hard to sum up. Often, the symptoms are so bizarre and confusing that we don't understand them ourselves!

It's best to keep things simple and find comparisons people can relate to. You might want to have a few different explanations ready, though, for different situations. For example, you want a really quick answer for, say, a casual acquaintance at a social event, whereas you may want to provide a little more detail to a close friend or family member.

Probably the simplest explanation I've ever heard is:

  • Fibromyalgia is like a migraine all over your body.

Most people, whether they've had one or not, have a pretty good idea of what a migraine is, so this makes sense to them.

Of course, that explanation only deals with one aspect of our illness -- pain. If you want someone to understand your fatigue, fibro fog, or ups and downs, you'll need a different approach.

Explaining Fatigue

Just about everyone has had a fatiguing illness like the flu or strep throat, so those can be good comparisons. I've also had good luck with this one:

  • You know how you feel when something wakes you up in the middle of the night, after just a few hours of sleep? That's what it's like every morning, no matter how much I sleep. Sometimes I feel like that all day.

Other things you can compare it to are:

  • The exhaustion of being a new parent;
  • Having a hangover;
  • Pulling an all-nighter in college;
  • Severe jet lag;
  • Coming out of anesthesia.

Explaining Fibro Fog

To explain your cognitive dysfunction, again it pays to rely on common experiences.

Who hasn't walked into a room and forgotten why they were there? Or struggled to find the right word? It happens to everyone now and then, so you can say that fibro fog is like that, only all the time.

The name "fibro fog" is fairly descriptive, so get the people in your life acquainted with that phrase. They'll generally understand (to a point, anyway) something like, "I'm foggy-headed today," or, "It feels like my brain is packed in cotton."

Ups & Downs

Probably one of the most difficult things for people to understand about fibromyalgia is the way our symptoms rise and fall. People tend to think of illness as a constant, so it's confusing for them to see you doing well one day -- or one minute -- and unable to function the next.

The best comparison I've found for this is:

  • Fibromyalgia symptoms come and go, kind of like flares and remissions in multiple sclerosis.

    It can help to compare your symptoms to a roller coaster, as well. Let them know what kinds of things (stress, loud noise, etc.) trigger a sudden symptom flare so they understand how quickly symptoms can strike.

    A More Physiological Explanation

    Sometimes, you may need someone to understand things in more medical terms. If you're a research geek like me, it can get easy to get into too much detail and confuse people with explanations of things like neurotransmitters and the body's stress-response system.

    The simplest way I've found to explain the physiology of fibromyalgia is:

    • My brain and nerves are hypersensitive and over-react to pain and all sorts of other things, and my hormones and immune system are messed up, too.

    If someone thinks "brain" equates to "psychological," you can explain that fibromyalgia is neurological, which puts it in the same category as diseases like Alzheimer's and Parkinson's.

    If you find that someone wants in-depth medical information beyond what you can explain, here are some articles you can point them to:

    Because you have your own unique set of symptoms, you'll have to tailor your explanations to your experience. It pays to give it some thought ahead of time, though, so you have an answer on the top of your head even on a foggy day.

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