This is an absolutely wonderful post for all of you who may not understand the word Fibromyalgia. Do you want to know and understand me and those who have fibromyalgia? Please read this and support us on National Fibromyalgia Awareness Day on May 12, 2011. Thank you Adrienne for helping everyone understand our condition. To read more from Adrienne, please visit About.com Fibromyalgia and Chronic Fatigue.
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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 February 03, 2011
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 actual pain. Other substances in the patient’s brain amplify a host of other signals — essentially, “turning up the volume” of everything. That can include light, noise and odor on top of pain, and it can further overload the brain. This can lead to confusion, fear, anxiety and panic attacks. 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 fibromyalgia 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.
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Does this help you a little in understanding what we go through on a daily basis and why we aren’t the most dependable people some time and how we can’t always plan things in the future? My life has changed so much in the last 5 years since this all started. It was hard for me to understand and now to explain to others is difficult. I may just copy this and give it to everyone I know that doesn’t get it. I know I used to be one of them. I hope it helps you understand and get to know me better. Please leave me a comment and let me know what you think and if you have any other questions that you may have about fibromyalgia.



















{ 11 comments… read them below or add one }
This is a great explanation. I’m going to have my husband read it because he does not understand it and it makes things very difficult sometimes. Please pray that his eyes will be opened and his heart will receive it. Thanks so much for sharing this!
Sara @ Embracing Destiny recently posted..No-Work Spanish Audiobooks a MamaBzz review
Wonderful explanation! I’m going to be sharing your link at http://www.facebook.com/GivenMeaThorn
Jenni Saake “InfertilityMom” recently posted..Through Another Mothers Day
Great explanation, Karen. Thanks for sharing this link to help others understand, or possibly see themselves and get diagnosed. As you know my sister, Michele, suffers from this, along with Lupus – a double whammy. May there one day be a cure.
Blessings.
Marsha recently posted..Monday On Grace Café Angie Smith
What an awesome description! I have often tried to explain The RA(and now, Fibro) “feeling” is like how you feel at the end of the Flu—exhausted, achy,& sometimes a low grade fever.Of course, that doesn’t cover even half the symptoms, but it does give a “visual”. Somtimes it feels like I am barely treading water through the day 2 day of life—”living with it” as you said is most definitely the hardest part. I’ll be sharing through FB & linkin on my next post:)
Thanks for the great post!!
Denise recently posted..easy American Hot Dog Casserole
Karen, there is new research showing that often runs hand-in-hand with CRPS (the disease that I have). I love reading your blog; in fact, it’s partly what inspired me to start my own, to see if I could work through the tougher days through writing, and hopefully with the encouragement of others.
And oh my goodness gracious…. look at that, “your” verse is the same as “mine”!
Shari recently posted..Cold sores – in my EYE
This post helped me and I’ve been diagnosed with it in January 2009. As a severe chronic pain sufferer since 2000 I finally came across a post that says it all. As I’m writing this I’m getting teary eyed because someone finally gets it.
Thank you.
Rona recently posted..Happy Birthday BerryMorins Bits & Tips Giveaway – 25 Schwans Gift Card
I didn’t know what fibromyalgia was until a few weeks ago. I have had unexplained pain and aches for over a year now and a friend posted info on Fibro. I thought “oh my word, that sounds like what’s been going on with me”. Combined with depression and sleep apnea that I’m on cpap for….what kind of dr should I see?
I stumbled across your blog from the circle of moms and it caught my eye because I too have Fibromyalgia. I posted a link to this very same article on National Fibro Day. I am sorry you have Fibro too, but I am glad to have found your blog and look forward to getting to know you better. I have been battling the illness since late 2003.
Would you consider joining http://fibrobloggerdirectory.blogspot.com/?
It is a new directory I started to connect fibro bloggers – it is free and simple to join by just adding your URL.
Thanks
Lee recently posted..Get involved
I have had Fybromyalga since 1998, and thanks for putting this in plain english
for others who don’t know what to think about it. Now our family members can
know what we go through every day.
Thank you for this wonderful, eye-opening expanation of Fibro. It is so comforting to know that someone else understands what I have lived with for the past ten years. In addition to Fibro-having most of the painful symptoms you mentioned in your blog, I have diabetes, heart disease, depression and numerous other health issues. I have been completely disabled for the last six years. The physical and emotional anguish I experience have left me feeling so isolated and alone. Reading your article helped me see outside of myself and reminded me to be more accepting of my own limitations. It is so easy to FEEL completely lazy and worthless because I am so disabled. Thank you for enabling me to see my situation from another perspective. I can still choose to love myself and others, in spite of my pain. Praying for a cure.
PS-I have visited Riverland Hills Baptist Church…what a small world.