THE SHOW IS FINALLY HERE!
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fibroLIFE and LIVING a fibroLIFE Blog have always been about learning what you have to learn about Fibromyalgia, figuring out how to find and work successfully with a healthcare team to develop a personalized treatment approach, and helping you get back to LIVING the fullest LIFE possible in spite of fibromyalgia. Basically: Minimize the fibro--Maximize the LIFE.
Now, I am not arrogant nor foolish enough to believe that I have found a way to "simply" do the above. Fibromyalgia is complex, period. What I do believe, however, is that one of the biggest disservices we can do to someone newly diagnosed with Fibromyalgia--or struggling to find a way to deal with their FMS, no matter how long they have had it-- is hand them a huge book of information, no matter how important and accurate the information is. The very nature of Fibromyalgia makes this a mistake! It is overwhelming and rather than helping, as intended, it can actually make the person feel worse and want to give up. A website full of information, page after page to download, fill out, and take to your doctor, an app full of screens to track every possible symptom, etc. are just as overwhelming to most. Since we cannot make Fibromyalgia simple, fibroLIFE has always said we have to simplify the process of learning to LIVE with and in spite of it.
My approach--Fibromyalgia Made Simple--breaks the information down into segments that are actually "doable". In perfect sync with fibroLIFE philosophy, it focuses on Fibromyalgia basics, how to apply and utilize those basics, and how to build and successfully work with a healthcare team to develop a personalized treatment plan.
Now, I am not arrogant nor foolish enough to believe that I have found a way to "simply" do the above. Fibromyalgia is complex, period. What I do believe, however, is that one of the biggest disservices we can do to someone newly diagnosed with Fibromyalgia--or struggling to find a way to deal with their FMS, no matter how long they have had it-- is hand them a huge book of information, no matter how important and accurate the information is. The very nature of Fibromyalgia makes this a mistake! It is overwhelming and rather than helping, as intended, it can actually make the person feel worse and want to give up. A website full of information, page after page to download, fill out, and take to your doctor, an app full of screens to track every possible symptom, etc. are just as overwhelming to most. Since we cannot make Fibromyalgia simple, fibroLIFE has always said we have to simplify the process of learning to LIVE with and in spite of it.
My approach--Fibromyalgia Made Simple--breaks the information down into segments that are actually "doable". In perfect sync with fibroLIFE philosophy, it focuses on Fibromyalgia basics, how to apply and utilize those basics, and how to build and successfully work with a healthcare team to develop a personalized treatment plan.
"What is the Deal With Fibromyalgia?"
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I am in the process of writing Fibromyalgia Made Simple. This article has some very interesting historical facts and is not inaccurate, but it is several years old. (The resources listed are current and I truly believe in each of them.) Until Fibromyalgia Made Simple is available, I hope you enjoy the videos to the left.
Thank you! ~Meshea |
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What is Fibromyalgia (FMS)? There is not a simple way to answer this question, nor do I feel that I have the best description or explanation. In fact, I am sure there are many versions available that are better than mine, however, I have used some historical facts that many find interesting, so I am including it here. After it, you will find links to other sources which I trust and recommend, starting with my dear friend, Celeste Cooper. Next you will find a link to Fibromyalgia Patient Education and Support, founded by Necie Edwards. Another excellent resource is Dr. Ginevra Liptan You will also find a link to a copy of an article I have shared with others many times from about.com, and lastly, a link to The Spoon Theory I realize, there is a lot of content here, but FMS is very complicated. Also, many websites are dedicated to the topic, but not all are accurate, nor do we all learn in the same manner. For these reasons, I feel it is important to offer you the variety below. I do hope you can find the time to read each of them for that will indeed give you a very well-rounded, fact-based understanding of FMS and its complexities. ~Meshea |
What is Fibromyalgia? by Meshea Crysup
Pull up a chair and sit awhile. You are about to find out that there is nothing quick or easy about fibromyalgia (FMS)
...not even its definition.
Do you remember the last time you were going up a flight of stairs and the muscles in your legs began to burn?
Do you recall the last time you had the flu: how you ached all over and just felt washed out?
What about the last time you were up over twenty-four hours straight, and you could not think straight or concentrate on anything?
Or, have you ever held pressure on the area where your neck and shoulders meet, to try to loosen up the stiffness, only to find that you pressed a bit too hard, causing a deep, burning sensation in the muscle that was nearly unbearable?
Perhaps you have had a day that started out with your colon in spasms, but that cleared up just in time for your head to begin to hurt so badly you could not focus well enough to accomplish anything. Then, just when you thought the day could not get any worse, the headache eased up but was followed immediately by a loud ringing in your ears, or perhaps by bladder spasms, or a numb, tingly, swollen feeling in your hands, or severe pain in your legs, in which the muscles were drawing so tightly, you were sure your bones were going to be pulled apart?
As if all of that were not enough, throw in varying degrees of anxiety and depression, along with vacillating back and forth between, “I am so sick and I do not know how much more I can take!” and, “I must have just had the flu…or something like that… again…and, again…and again, and, " I was just being a wimp, or worse, a hypochondriac, when I went to the doctor convinced that there was something really wrong with me last time…and the time before that…and the time before that one…”
If you can relate to any of these circumstances, then you can relate to a day in the life of someone with Fibromyalgia.
If you really mentally walk yourself through it for a few minutes, putting yourself in the situations described above, you will understand why the explanation of how Fibromyalgia makes one feel is complex and that the occurrences of its symptoms are varied, to say the least. These facts alone help one understand that a truly informative definition of Fibromyalgia cannot be simple, concise, or exact. Still, a definition is required.
This is the definition given by the National Fibromyalgia Association, at their website, www.fmaware.org
Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.
Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.
The author, Karen Lee Richards, has written an excellent article, “History of Fibromyalgia”.
Karen Lee Richards writes:
“Fibromyalgia is usually thought of as a fairly new illness, however, it may have actually existed for centuries. Although the term “fibromyalgia” was first coined in 1976, physicians have written about conditions resembling FM since the early 1800s. Reports of illnesses with strikingly similar symptoms can even be found as far back as around 1500 BC.”
She then goes on to explain that she believes the account of Job in the Bible (Job 7:3-4) is the earliest written description of FMS.
Karen Lee Richards also writes:
“In the 19th century, the English army nurse and Red Cross pioneer Florence Nightingale was taken ill with fibromyalgia-like symptoms. She became ill while working on the front lines during the Crimean War (1854 – 1856) and never really recovered. Until her death in 1910, Nightingale was virtually bedridden much of the time, suffering with unrelenting pain and fatigue.
She then lists the following milestones in the history of FMS:
• 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
• 1816 – Dr. William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
• 1824 – Dr. Balfour described tender points.
• 1904 – Sir William Gowers coined the term fibrositis (literally meaning inflammation of fibers) to denote the tender points found in patients with muscular rheumatism.
• 1972 – Dr. Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
• 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
• 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
• 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
• 1987 – The American Medical Association recognized fibromyalgia as a real physical condition.
• 1990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes. The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
• 1990s – The concept of neurohormonal mechanisms with central sensitization was developed.
These are just some excerpts. The article in its entirety can be found at:
http://www.healthcentral.com/chronic-pain/fibromyalgia-287647-5.html
Since the 1990’s, even more research has shown that FMS is, at least in part, a neurological disorder and it is being more accepted as a legitimate disorder by those in the medical/health communities. Beginning in 2007, three medications have been approved by the FDA for the treatment of FMS: Lyrica, Cymbalta, and Savella. These medications were already in use for other conditions, and, therefore they were not created for FMS specifically. The research simply is not there for specific medication production at this time.
Ms. Richards is not the only one to claim that FMS has an extensive history. Dr. Inanici F, Yunus MB. Department of Medicine, University of Illinois College of Medicine at Peoria, states that FMS has been around for “centuries”. Many other researchers and others in the medical, and medical related fields, also document an extensive history for FMS dating back centuries. FMS has been around for a long time and, as for now it appears it will continue to create fibro-lives for many years to come.
~Meshea Crysup
Pull up a chair and sit awhile. You are about to find out that there is nothing quick or easy about fibromyalgia (FMS)
...not even its definition.
Do you remember the last time you were going up a flight of stairs and the muscles in your legs began to burn?
Do you recall the last time you had the flu: how you ached all over and just felt washed out?
What about the last time you were up over twenty-four hours straight, and you could not think straight or concentrate on anything?
Or, have you ever held pressure on the area where your neck and shoulders meet, to try to loosen up the stiffness, only to find that you pressed a bit too hard, causing a deep, burning sensation in the muscle that was nearly unbearable?
Perhaps you have had a day that started out with your colon in spasms, but that cleared up just in time for your head to begin to hurt so badly you could not focus well enough to accomplish anything. Then, just when you thought the day could not get any worse, the headache eased up but was followed immediately by a loud ringing in your ears, or perhaps by bladder spasms, or a numb, tingly, swollen feeling in your hands, or severe pain in your legs, in which the muscles were drawing so tightly, you were sure your bones were going to be pulled apart?
As if all of that were not enough, throw in varying degrees of anxiety and depression, along with vacillating back and forth between, “I am so sick and I do not know how much more I can take!” and, “I must have just had the flu…or something like that… again…and, again…and again, and, " I was just being a wimp, or worse, a hypochondriac, when I went to the doctor convinced that there was something really wrong with me last time…and the time before that…and the time before that one…”
If you can relate to any of these circumstances, then you can relate to a day in the life of someone with Fibromyalgia.
If you really mentally walk yourself through it for a few minutes, putting yourself in the situations described above, you will understand why the explanation of how Fibromyalgia makes one feel is complex and that the occurrences of its symptoms are varied, to say the least. These facts alone help one understand that a truly informative definition of Fibromyalgia cannot be simple, concise, or exact. Still, a definition is required.
This is the definition given by the National Fibromyalgia Association, at their website, www.fmaware.org
Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.
Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.
The author, Karen Lee Richards, has written an excellent article, “History of Fibromyalgia”.
Karen Lee Richards writes:
“Fibromyalgia is usually thought of as a fairly new illness, however, it may have actually existed for centuries. Although the term “fibromyalgia” was first coined in 1976, physicians have written about conditions resembling FM since the early 1800s. Reports of illnesses with strikingly similar symptoms can even be found as far back as around 1500 BC.”
She then goes on to explain that she believes the account of Job in the Bible (Job 7:3-4) is the earliest written description of FMS.
Karen Lee Richards also writes:
“In the 19th century, the English army nurse and Red Cross pioneer Florence Nightingale was taken ill with fibromyalgia-like symptoms. She became ill while working on the front lines during the Crimean War (1854 – 1856) and never really recovered. Until her death in 1910, Nightingale was virtually bedridden much of the time, suffering with unrelenting pain and fatigue.
She then lists the following milestones in the history of FMS:
• 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
• 1816 – Dr. William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
• 1824 – Dr. Balfour described tender points.
• 1904 – Sir William Gowers coined the term fibrositis (literally meaning inflammation of fibers) to denote the tender points found in patients with muscular rheumatism.
• 1972 – Dr. Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
• 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
• 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
• 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
• 1987 – The American Medical Association recognized fibromyalgia as a real physical condition.
• 1990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes. The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
• 1990s – The concept of neurohormonal mechanisms with central sensitization was developed.
These are just some excerpts. The article in its entirety can be found at:
http://www.healthcentral.com/chronic-pain/fibromyalgia-287647-5.html
Since the 1990’s, even more research has shown that FMS is, at least in part, a neurological disorder and it is being more accepted as a legitimate disorder by those in the medical/health communities. Beginning in 2007, three medications have been approved by the FDA for the treatment of FMS: Lyrica, Cymbalta, and Savella. These medications were already in use for other conditions, and, therefore they were not created for FMS specifically. The research simply is not there for specific medication production at this time.
Ms. Richards is not the only one to claim that FMS has an extensive history. Dr. Inanici F, Yunus MB. Department of Medicine, University of Illinois College of Medicine at Peoria, states that FMS has been around for “centuries”. Many other researchers and others in the medical, and medical related fields, also document an extensive history for FMS dating back centuries. FMS has been around for a long time and, as for now it appears it will continue to create fibro-lives for many years to come.
~Meshea Crysup
This is a link to my friend, Celeste Cooper's, website. You can always trust what she has to say on the subject of Fibromyalgia (FMS).
www.celestecooper.com/
This is the one of the best explanations of Fibromyalgia I have found yet. I have highlighted a "good quote" for you to have on hand as a "short" yet accurate way to answer when you are asked about FMS. ~Meshea
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
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.
Related terms
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
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.
Related terms
- Flare-up
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.
Related terms
- Norephinephrine (noradrenaline)
- Cortisol
- HPA Axis
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
This is the link to "The Spoon Theory".
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
