Making Sense of a Complex Disorder
Fibromyalgia is a complex condition that’s difficult to understand, especially if you don’t have extensive medical knowledge. Because it involves the brain and nervous system, it can have an impact on virtually every part of the body. Symptoms can come and go, and get more or less intense, seemingly at random.
And when someone’s in pain, there should be an obvious cause, right? And how does pain hop from one area of the body to another?
Why does a light touch hurt like you’ve been punched or burned?
If you’re trying to understand this condition, in someone you know or even in yourself, it can be incredibly confusing. The strangeness of it, combined with a slew of negative medical tests, leads some people to decide that 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, mitochondrial dysfunction, and descending pain 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 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 and figure out this condition.
Understanding the Pain
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 those of us with this condition.
The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn simple things like mild pressure or even an itch into pain.
When those pain signals reach the brain, they’re processed by something called serotonin. However, we don’t have enough serotonin (the friends who didn’t show up to help), leaving the brain overwhelmed.
This is why we have pain in tissues that show no sign of damage. It’s not imagined pain; it’s misinterpreted sensation that the nerves and brain turn into actual pain.
Other substances in the patient’s brain amplify a host of other signals—essentially, “turning up the volume” of everything your senses detect. That can include light, noise, and odor on top of pain, and it leads to sensory overload. This can cause confusion, fear, anxiety, and panic attacks.
Understanding the Ups & Downs
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 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 that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes many of them are in the normal zone and other times they’re not. The more things that are out of the zone, the worse the person feels.
Understanding Reactions to Stress
Some people think we’re emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse. Sometimes, it can trigger a major symptom flare.
The important thing to understand is that we all respond to stress both emotionally and physically. A physical response, in everyone, can include 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. That why it can kick up 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 on fibromyalgia as emotional stress.
Think of what it’s like to wake up to a phone call or a frightening noise in the middle of the night, when you’re in a deep sleep. Now imagine feeling that way every time you’re running late for work or you have to swerve to avoid a traffic accident, and then imagine that you poured boiling water on your arm at the same time. That’ll get you pretty close to what fibromites go thorugh.
Understanding the Fatigue
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. We 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)
Beyond that, most people with this condition have unrefreshing sleep as a symptom. Basically, it means that no matter how much we sleep, we don’t wake up rested. Then, we’re often kept awake or awakened by pain.
In a Nutshell
A lot of illnesses involve one part of the body, or one system. Fibromyalgia 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.
This illness 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.