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Each Day Already is a Challenge #649381 added May 12, 2009 at 1:44pm
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Fibromyalgia Awareness Month and Day
May is Fibromyalgia Awareness Month and May 12 is Fibromyalgia Awareness Day.
Someone you know probably has fibromyalgia, even if she (or he, but it mostly hits females) has not yet been diagnosed.
For years, fibro sufferers were left to doubt themselves as doctors struggled to understand and diagnose the disease. What a difficult task that was, since fibromyalgia symptoms can change by the hour!
Fibromyalgia sufferers make up as much as 4% of the entire population! According to the National Foundation for Fibromyalgia, as many as 12 million Americans suffer from FM but remain undiagnosed. While fibromyalgia is most common in women, especially between the ages of 20 and 50, it does affect men, the elderly and children. Kids are often mistakenly diagnosed with growing pains or behavioral problems. And often times, FM is mistaken for chronic fatigue syndrome, since the symptoms are similar and the two often go hand-in-hand.
Each year around this time, I try to write something to explain at least what I go through with fibromyalgia. Some of what I experience is similar to what others experience. Some of my experiences differ from other fibro patients.
Before I get into the symptoms of this malady, perhaps we should discuss what causes fibromyalgia. Researchers are not sure. They think that trauma - emotional and/or physical - can trigger fibromyalgia syndrome, or fibromyalgia/chronic fatigue syndrome. (Some choose to link the two syndromes together because they usually are linked and the symptoms mimic each other.)
When my fibro started is a mystery to me and to my doctors.
I had a back injury in 1997 (possible physical trigger) and I left my husband because he was being abusive to our son (possible emotional trigger).
I had two rear-end automobile collisions in the span of three months in the year 2000. In one,
I had whiplash (a possible physical trigger) and in the other my car was damaged so much that it took 8 weeks to get it repaired (a possible emotional trigger).
I had a knee injury and arthroscopic surgery in 2002 (a possible physical trigger). A year later, my worker's compensation pay was cut off because I had reached "maximum medical improvement", but my doctors would not release me to work because they determined that I was not capable of working (a possible emotional trigger).
In 2003, I moved from one Texas town to another, then to northern Michigan, then to central Michigan, then ended up women's abuse shelter for 30 days, then moved in with my elderly parents. My Dad had Alzheimer's and Parkinson's and my Mom, although we didn't know it then, was beginning to show signs of alcohol-induced dementia. (emotional triggers?)
Also in 2003, my only son moved in with his girlfriend and her mother in Memphis, TN. (emotional trigger?)
Social Security Disability personnel decided that I was not disabled, although Michigan did think I was and paid me $283 per month and $100 in food stamps. The income was not enough to live on my own, obviously. Even renting a room costs more than $283 per month in most parts of the country.
And in 2003, I was finally diagnosed with fibromyalgia.
In 2005, I married my hubby and moved again - to Ohio. The Michigan disabilty stopped and there is nothing like that in Ohio, and with him working I don't qualify for food stamps. Even with his work provided insurance, our medical bills are quite high. Doctors are forever wanting to do tests about digestive problems or what look like heart or chest problems, only to realize/discover that it's another aspect of fibromyalgia or a result of fibro.
When web sites start to explain fibromyalgia, one of the first things they usually mention is that with fibro, the pain receptors are confused and forget to turn off. That leads one to believe that fibro is merely a pain issue, but there is so much more than pain involved.
Often times, when people are trying to explain fibro, they say that it's like having the flu all the time. It is, but that doesn't quite explain it either. But to begin with, imagine a time when you had the flu. You were aching all over, tired, irritable, perhaps coughing, cold and shivering. Imagine living like that every day of your life, with no hope - right now, at least - of ever being cured. Like with the flu, there are medications for fibro sufferers that can lessen or eliminate some symptoms, but the syndrome is not cured by those medications.
Now, before you think that's all that fibro is about, imagine this exercise. One fibro site suggests that you take one of those old spring-loaded clothespins and attach one to your arm and imagine living with that pain all the time. They say that's what it's like to have fibromyalgia.
I would take both of these explainations and put them together. It's like having the flu all the time, and it's like having dozens of those clothespins attached all over your body all the time. Sometimes they're pinching a lot and sometimes not so much, but they're always there.
Official fibromyalgia web sites list these symptoms:
Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively. Pain can also appear in bones and joints, as well as in muscles.
Fatigue - This symptom can be mild in some fibromyalgia patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as thought their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.
Sleep disorder - Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine that recorded the brain waves of patients during sleep. Researchers found that the majority of fibromyalgia patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it. Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck-what doctors refer to as unrefreshing sleep-it is reasonable for your physician to assume that you have a sleep disorder. Many fibromyalgia patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movement during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).
Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of fibromalgia patients. Acid reflux or gastroesophageal reflux disease (GERD) also occurs with the same high frequency.
Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of fibromyalgia patients and can pose a major problem in coping for this patient group.
Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one-quarter of fibromyalgia patients. However, a 1997 published report indicated that close to 75% of fibromyalgia patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.
Other common symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications they are prescribed.
Aggravating factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to fibromyalgia symptom flare-ups.
Source: Fibromyalgia Network - Symptoms
I have the pains in my muscles and joints (which, in my back and knee is also arthritis). I have constant pain. Sometimes I have aches, sometimes shooting pains, sometimes burning pains, sometimes pulsing pains.
I also have chronic fatigue, depression, IBS.
I have chemical sensitivities.
I have thinned skin, which results in bruising and bleeding at the slightest bump.
I'm totally intolerant of latex. If I wear latex gloves myself, it results in each of my fingertips bleeding within 10 minutes. Hopefully, people taking care of my medical needs will never slip up and use latex gloves during any tests or procedures, because we don't know what will happen if they do!
I get brain (fibro) fog, and I have what I call a "dyslexic mouth".
I get migraine headaches.
I have a skin condition called "palmaplantar pustulosis".
My ears frequently feel like they've been frostbitten, even in the midst of summer. It's quite painful and my doctors don't have an explanation for that other than it must be part of my fibromyalgia.
I also get soooooo sick with most prescriptions I take, so I have do take a prescription for nausea every day.
Any and all of these might be part of having fibromyalgia, or they might be the result of having a weakened immune system because of the fibro.
If someone you know says that she/he has fibromyalgia, take a minute to try to understand. Today, your friend or relative might be able to function fairly normally, and you'll naturally expect that your friend can do the same thing tomorrow. It isn't always so. Click this link to see The Spoon Theory. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Basically, the spoon theory says that each person is given a certain number of spoons each day. The "normal" person might use one spoon in the process of waking up, getting ready for work, eating breakfast and driving to work. The person with fibromyalgia (or other invisible illnesses) might use up one spoon for each of those activities, so by the time lunch time comes around, the fibro patient may have used up all of her/his spoons.
I've been doing a lot of writing about fibro. At Gather.come, I have shared articles with these titles:
What in the world is fibro fog?
Please Understand
What is Fibromyalgia?
How Dare You!
Understanding Fibromyalgia (or other chronic) Pain
Fibrmyalgia and Chest Wall Pain
Fibro Symptoms Linked to a Brain Chemical
Being a Christian with Fibro Fog
A New Fibromyalgia Drug Comes With Warnings
Sufficient Grace
One Doctor's Take on Fibromyalgia
Reducing Pain
My "Friend" Fibro
My Dyslexic Mouth
It's My Body!
Oh Fibro, You Rascal
Oh Fog, You Devil
Ears That Go "Owwww!"
The Skin(ny) On Me
Drugs and the FDA
Your Will, Lord, Not Mine
It's a New Day
Speaking of Pain...
I'm So Tired
Some of those I shared here as well.
Here are some good fibro resources:
Fibromyalgia Netwodk
http://www.fmnetnews.com/
National Fibromyalgia Association
http://www.fmaware.org/site/PageServer
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