How To Explain Fibromyalgia To Family and Friends
July 28, 2010 Leave a comment
If you have FM you probably are like me and truly dread the question “What is fibromyalgia”. Then, when you do try to explain it ever get “the look”? You know, the one where you can tell they don’t believe you or they don’t even believe it’s even real?
Explaining fibromyalgia is very difficult without being overly technical or complicated. If you, like myself have had this condition for sometime by this point you know all about trigger points, neurotransmitters, stages of sleep and patterns, myofascial syndrome, SSRI’s , and so on and so on. We forget how complex this knowledge is to people that have no understanding, that is, until you see their “deer caught in headlight look” and their eyes just glaze right on over shortly into your conversation. At that point, I am like, ok then and change the subject with a blow off of “I know it’s crazy huh, hey, how are the kids doing?”
As a general rule, anyone listening to what we are saying or reading something you sent them via email are to say the least a wee bit skeptical and some really just don’t want to take the time to understand something that is so complicated and confusing such as this illness.
I found this article that I hope will shed some light on the subject on helping your family and friends have a better understanding of what goes on with you that won’t glaze their eyes over.
What’s Going On? A Simple Explanation of Fibromyalgia. Making Sense of a Complex Disorder, for Those Who Don’t Have It
By Adrienne Dellwo, About.com Guide Updated September 22, 2009
Fibromyalgia is a complex condition that’s difficult to understand, especially if you don’t have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.
If you’re trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don’t show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it’s a very real physical condition.
Digging through that scientific research doesn’t help most of us, though. Terms like neurotransmitter dysregulation, nociceptors, cellular enzymes and opiate pathways aren’t exactly easy to grasp.
The goal of this article is to help you understand and relate to what’s going on in the body of someone with fibromyalgia, in plain terms and without medical jargon. At the end of each section, you’ll find relevant medical terms with links to definitions. They’ll be helpful if you want to go beyond a basic understanding, but you don’t need to understand the terms to get through this article.
Understanding the Pain of Fibromyalgia
Imagine you’re planning a party and expecting about 20 guests. Three or four friends told you they’d come early to help you out. But they don’t show, and instead of 20 guests, you get 100. You’re overwhelmed.
That’s what’s happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.
When those pain signals reach the brain, they’re processed by something called serotonin. People with fibromyalgia, however, don’t have enough serotonin (the friends who didn’t show up to help), leaving the brain overwhelmed.
This is why people with fibromyalgia have pain in tissues that show no sign of damage. It’s not imagined pain; it’s misinterpreted sensation that the brain turns into very real pain.
Other substances in the patient’s brain amplify signals — essentially, “turning up the volume” of everything. That can include light, noise and odor on top of pain, and it can overload the brain. This can lead to confusion, fear, anxiety and panic attacks.
Understanding the Ups & Downs of Fibromyalgia
Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It’s understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.
Look at it this way: Everyone’s hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.
Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they’re not. The more things that are out of the zone, the worse they’ll feel.
Understanding Stress & Fibromyalgia
Some people think FM patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.
The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what’s happening.
People with fibromyalgia don’t have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.
Also, when we talk about “stress” we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.
Understanding the Fatigue of Fibromyalgia
Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.
Imagine being exhausted like that all day while you’re trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night’s sleep would take that feeling away.
With fibromyalgia, though, comes sleep disorders that make a good night’s sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:
- Insomnia (difficulty getting to sleep or staying asleep)
- Inability to reach or stay in a deep sleep
- Sleep apnea (breathing disturbances that can wake the person repeatedly)
- Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)
- Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)
Fibromyalgia In a Nutshell
A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they’re tied to very real physical causes.
Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
- It’s NOT psychological “burn out” or depression.
- It’s NOT laziness.
- It’s NOT whining or malingering.
- It IS the result of widespread dysfunction in the body and the brain that’s hard to understand, difficult to treat, and, so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.