Monday, April 27, 2009
Introduceing my Self Properly
Hello I’ve been floating around for a wile but I thought id introduce my self properly.
I’m 37, have 1 child a girl who is 13 and has Autism, and I have been married for 15 years. I work part time at a coffee shop. I’m a coffee addict LOL I just love the stuff, but not the fun drinks with all the flavors and whip cream, I like a shot of chocolate and some milk but that’s it. I have 3 Ferrets and 6 fish. I live in Minnesota. I’m dyslexic and spell very bad, so please forgive my bad spelling in posts. My favorite color is green, food is Nilla Wafers, TV show is Stargate SG-1, Thing to do is play City of Heroes the on line game and I’ve found that Blogging is fun and giving me an out let for venting. I have an old Blog and have just started to use it again. I have had symptoms for 7 years but was finally DX in October of 2008. Like many of you I’ve lost most of my friends and family, because they just don’t understand or don’t have the time or patients to deal with me and my FM. So to all who suffer like me or those who know some one with FM I’d ask that you pleas be patient with us. We want to be in you’re life’s we just have to be in them differently now.
I’m 37, have 1 child a girl who is 13 and has Autism, and I have been married for 15 years. I work part time at a coffee shop. I’m a coffee addict LOL I just love the stuff, but not the fun drinks with all the flavors and whip cream, I like a shot of chocolate and some milk but that’s it. I have 3 Ferrets and 6 fish. I live in Minnesota. I’m dyslexic and spell very bad, so please forgive my bad spelling in posts. My favorite color is green, food is Nilla Wafers, TV show is Stargate SG-1, Thing to do is play City of Heroes the on line game and I’ve found that Blogging is fun and giving me an out let for venting. I have an old Blog and have just started to use it again. I have had symptoms for 7 years but was finally DX in October of 2008. Like many of you I’ve lost most of my friends and family, because they just don’t understand or don’t have the time or patients to deal with me and my FM. So to all who suffer like me or those who know some one with FM I’d ask that you pleas be patient with us. We want to be in you’re life’s we just have to be in them differently now.
Friday, April 24, 2009
Fibromyalgia myths: The truth about 9 common myths
Get the facts about these nine common fibromyalgia myths. Learning all you can about fibromyalgia is the first step toward gaining control of your symptoms.
Fibromyalgia is a widely misunderstood condition that causes widespread pain and fatigue. If you've been diagnosed with fibromyalgia and are trying to learn all you can about the condition, you may come across some of the many common myths and misconceptions about fibromyalgia. Don't let these myths confuse you or discourage you from seeking help for your fibromyalgia symptoms. Here's a look at nine common myths about fibromyalgia and why each is wrong.
Myth: Most doctors don't believe fibromyalgia is a real condition.
Truth: This myth may come from a misunderstanding. Since fibromyalgia is defined by a list of symptoms, claiming that fibromyalgia isn't real is essentially saying that your symptoms aren't real. That doesn't make sense. Most doctors believe your symptoms are real.
The controversy comes when deciding whether fibromyalgia is a disease process that can be reversed or cured. Most doctors believe fibromyalgia is a set of symptoms that aren't caused by an underlying disease. Most doctors believe that fibromyalgia symptoms can be managed, but there is no underlying disease to "cure."
In some cases, a doctor may not be familiar with fibromyalgia. He or she can refer you to someone who knows more about the condition.
Finding a compassionate doctor can be a frustrating part of living with fibromyalgia. But don't give up if you haven't found the perfect doctor. Focus on finding a doctor who is willing to listen to you and take you seriously.
Finding a doctor who's an expert on fibromyalgia may not be practical, for instance, if there aren't many specialists in your area. But a doctor who's willing to learn more about fibromyalgia and listen to your concerns can be an invaluable ally.
Myth: Fibromyalgia damages your joints.
Truth: Though fibromyalgia pain can be severe at times, it doesn't damage your bones, joints or muscles. Some people worry that when pain worsens, it means that fibromyalgia is progressing. But that isn't the case. While increasing fibromyalgia pain can make it difficult to go about your daily activities, it isn't damaging your body.
Myth: You look fine, so there's nothing wrong with you.
Truth: You know this is a myth, but friends, family and co-workers who don't understand fibromyalgia may sometimes hold this belief. It can cause tension when others wonder if you're faking your pain because they think you don't look sick. Resist the urge to get angry and withdraw rather than explain how you're feeling.
Open and honest communication can help others better understand fibromyalgia. Be honest about how you feel and let others know that if they have questions, you're willing to listen and explain.
Myth: You were diagnosed with fibromyalgia because your doctor couldn't find anything wrong with you.
Truth: Fibromyalgia is a specific diagnosis based on your symptoms, not a diagnosis you're given when there's nothing wrong with you. The American College of Rheumatology developed a set of criteria to help doctors diagnose fibromyalgia.
Diagnosing fibromyalgia often takes time. Since there's no single test that can confirm you have fibromyalgia, your doctor will often run tests and procedures to rule out other conditions. Enduring repeated tests can be frustrating, but it's an important part of determining whether your symptoms are caused by fibromyalgia or something else. The results will guide your treatment.
Myth: Fibromyalgia causes pain. Those other symptoms you're experiencing must be caused by something else.
Truth: Fibromyalgia can cause symptoms in addition to pain. Many people with fibromyalgia also experience fatigue and difficulty sleeping. Other fibromyalgia symptoms may include headaches, sensitivity to light, dizziness, memory problems, and numbness and tingling in your arms and legs. A number of other conditions commonly accompany fibromyalgia, including irritable bowel syndrome, bladder control problems and mood disorders, such as depression and anxiety.
Myth: No treatments for fibromyalgia exist, so it's no use going to the doctor.
Truth: There's no standard treatment for fibromyalgia, and the Food and Drug Administration has approved just one drug for treating fibromyalgia. But you have many options for controlling fibromyalgia pain, including medications, lifestyle changes, and complementary and alternative treatments. Often you'll need to try a few treatments in different combinations to determine what works best.
Myth: On days when you're feeling good, you should try to do as much as you can since you may be unable to accomplish everything you want on other days.
Truth: Overdoing it on the good days may catch up with you. You may feel exhausted the next day and your fibromyalgia symptoms could worsen. But that doesn't mean you should keep your activity to a minimum. Doing very little could weaken your muscles and increase your pain.
Cope with the good days and the not-so-good days by finding a balance. Pace yourself. Set goals for each day. Your goals should be reasonable. And they should include daily exercise and time for yourself, such as time to relax or listen to music.
Myth: Fibromyalgia is a life-threatening disease.
Truth: Fibromyalgia isn't fatal and it doesn't damage your body. Fibromyalgia symptoms fluctuate over time, sometimes getting worse and sometimes becoming milder. Fibromyalgia pain rarely disappears completely, but you can learn to gain some control over it.
Myth: You can't have a productive life with fibromyalgia.
Truth: Learning to control your fibromyalgia pain takes time. It's likely that the pain will never completely go away and you'll have to accept that your life might never be the same. But that doesn't mean your life can't be satisfying and productive.
Work with your doctor to adapt your daily activities so that you can have time and energy for what's important to you. Your strategy may include a number of approaches, such as setting goals, for instance, making time for relaxation exercises every day, or making lifestyle changes, such as walking most days of the week.
Fibromyalgia is a widely misunderstood condition that causes widespread pain and fatigue. If you've been diagnosed with fibromyalgia and are trying to learn all you can about the condition, you may come across some of the many common myths and misconceptions about fibromyalgia. Don't let these myths confuse you or discourage you from seeking help for your fibromyalgia symptoms. Here's a look at nine common myths about fibromyalgia and why each is wrong.
Myth: Most doctors don't believe fibromyalgia is a real condition.
Truth: This myth may come from a misunderstanding. Since fibromyalgia is defined by a list of symptoms, claiming that fibromyalgia isn't real is essentially saying that your symptoms aren't real. That doesn't make sense. Most doctors believe your symptoms are real.
The controversy comes when deciding whether fibromyalgia is a disease process that can be reversed or cured. Most doctors believe fibromyalgia is a set of symptoms that aren't caused by an underlying disease. Most doctors believe that fibromyalgia symptoms can be managed, but there is no underlying disease to "cure."
In some cases, a doctor may not be familiar with fibromyalgia. He or she can refer you to someone who knows more about the condition.
Finding a compassionate doctor can be a frustrating part of living with fibromyalgia. But don't give up if you haven't found the perfect doctor. Focus on finding a doctor who is willing to listen to you and take you seriously.
Finding a doctor who's an expert on fibromyalgia may not be practical, for instance, if there aren't many specialists in your area. But a doctor who's willing to learn more about fibromyalgia and listen to your concerns can be an invaluable ally.
Myth: Fibromyalgia damages your joints.
Truth: Though fibromyalgia pain can be severe at times, it doesn't damage your bones, joints or muscles. Some people worry that when pain worsens, it means that fibromyalgia is progressing. But that isn't the case. While increasing fibromyalgia pain can make it difficult to go about your daily activities, it isn't damaging your body.
Myth: You look fine, so there's nothing wrong with you.
Truth: You know this is a myth, but friends, family and co-workers who don't understand fibromyalgia may sometimes hold this belief. It can cause tension when others wonder if you're faking your pain because they think you don't look sick. Resist the urge to get angry and withdraw rather than explain how you're feeling.
Open and honest communication can help others better understand fibromyalgia. Be honest about how you feel and let others know that if they have questions, you're willing to listen and explain.
Myth: You were diagnosed with fibromyalgia because your doctor couldn't find anything wrong with you.
Truth: Fibromyalgia is a specific diagnosis based on your symptoms, not a diagnosis you're given when there's nothing wrong with you. The American College of Rheumatology developed a set of criteria to help doctors diagnose fibromyalgia.
Diagnosing fibromyalgia often takes time. Since there's no single test that can confirm you have fibromyalgia, your doctor will often run tests and procedures to rule out other conditions. Enduring repeated tests can be frustrating, but it's an important part of determining whether your symptoms are caused by fibromyalgia or something else. The results will guide your treatment.
Myth: Fibromyalgia causes pain. Those other symptoms you're experiencing must be caused by something else.
Truth: Fibromyalgia can cause symptoms in addition to pain. Many people with fibromyalgia also experience fatigue and difficulty sleeping. Other fibromyalgia symptoms may include headaches, sensitivity to light, dizziness, memory problems, and numbness and tingling in your arms and legs. A number of other conditions commonly accompany fibromyalgia, including irritable bowel syndrome, bladder control problems and mood disorders, such as depression and anxiety.
Myth: No treatments for fibromyalgia exist, so it's no use going to the doctor.
Truth: There's no standard treatment for fibromyalgia, and the Food and Drug Administration has approved just one drug for treating fibromyalgia. But you have many options for controlling fibromyalgia pain, including medications, lifestyle changes, and complementary and alternative treatments. Often you'll need to try a few treatments in different combinations to determine what works best.
Myth: On days when you're feeling good, you should try to do as much as you can since you may be unable to accomplish everything you want on other days.
Truth: Overdoing it on the good days may catch up with you. You may feel exhausted the next day and your fibromyalgia symptoms could worsen. But that doesn't mean you should keep your activity to a minimum. Doing very little could weaken your muscles and increase your pain.
Cope with the good days and the not-so-good days by finding a balance. Pace yourself. Set goals for each day. Your goals should be reasonable. And they should include daily exercise and time for yourself, such as time to relax or listen to music.
Myth: Fibromyalgia is a life-threatening disease.
Truth: Fibromyalgia isn't fatal and it doesn't damage your body. Fibromyalgia symptoms fluctuate over time, sometimes getting worse and sometimes becoming milder. Fibromyalgia pain rarely disappears completely, but you can learn to gain some control over it.
Myth: You can't have a productive life with fibromyalgia.
Truth: Learning to control your fibromyalgia pain takes time. It's likely that the pain will never completely go away and you'll have to accept that your life might never be the same. But that doesn't mean your life can't be satisfying and productive.
Work with your doctor to adapt your daily activities so that you can have time and energy for what's important to you. Your strategy may include a number of approaches, such as setting goals, for instance, making time for relaxation exercises every day, or making lifestyle changes, such as walking most days of the week.
Fibromyalgia Coping and support
Besides dealing with the pain and fatigue of fibromyalgia, you may also have to deal with the frustration of having a condition that's often misunderstood. In addition to educating yourself about fibromyalgia, you may find it helpful to provide your family, friends and co-workers with information.
It's also helpful to know that you're not alone. Organizations such as the Arthritis Foundation and the American Chronic Pain Association provide educational classes and support groups. These groups can often provide a level of help and advice that you might not find anywhere else. They can also help put you in touch with others who have had similar experiences and can understand what you're going through.
It's also helpful to know that you're not alone. Organizations such as the Arthritis Foundation and the American Chronic Pain Association provide educational classes and support groups. These groups can often provide a level of help and advice that you might not find anywhere else. They can also help put you in touch with others who have had similar experiences and can understand what you're going through.
Fibromyalgia Alternative medicine
Complementary and alternative therapies for pain and stress management aren't new. Some, such as meditation and yoga, have been practiced for thousands of years. But their use has become more popular in recent years, especially with people who have chronic illnesses, such as fibromyalgia.
Several of these treatments do appear to safely relieve stress and reduce pain, and some are gaining acceptance in mainstream medicine. But many practices remain unproved because they haven't been adequately studied. Some of the more common complementary and alternative treatments promoted for pain management include:
Acupuncture. Acupuncture is a Chinese medical system based on restoring normal balance of life forces by inserting very fine needles through the skin to various depths. According to Western theories of acupuncture, the needles cause changes in blood flow and levels of neurotransmitters in the brain and spinal cord. Some studies indicate that acupuncture helps relieve fibromyalgia symptoms, while others show no benefit.
Chiropractic care. This treatment is based on the philosophy that restricted movement in the spine may lead to pain and reduced function. Spinal adjustment (manipulation) is one form of therapy chiropractors use to treat restricted spinal mobility. The goal is to restore spinal movement and, as a result, improve function and decrease pain. Chiropractors manipulate the spine from different positions using varying degrees of force. Manipulation doesn't need to be forceful to be effective. Chiropractors may also use massage and stretching to relax muscles that are shortened or in spasm. Because manipulation has risks, always go to properly trained and licensed practitioners.
Massage therapy. This is one of the oldest methods of health care still in practice. It involves use of different manipulative techniques to move your body's muscles and soft tissues. The therapy aims to improve blood circulation in the muscle, increasing the flow of nutrients and eliminating waste products. Massage can reduce your heart rate, relax your muscles, improve range of motion in your joints and increase production of your body's natural painkillers. It often helps relieve stress and anxiety. Although massage is almost always safe, avoid it if you have open sores, acute inflammation or circulatory problems.
Several of these treatments do appear to safely relieve stress and reduce pain, and some are gaining acceptance in mainstream medicine. But many practices remain unproved because they haven't been adequately studied. Some of the more common complementary and alternative treatments promoted for pain management include:
Acupuncture. Acupuncture is a Chinese medical system based on restoring normal balance of life forces by inserting very fine needles through the skin to various depths. According to Western theories of acupuncture, the needles cause changes in blood flow and levels of neurotransmitters in the brain and spinal cord. Some studies indicate that acupuncture helps relieve fibromyalgia symptoms, while others show no benefit.
Chiropractic care. This treatment is based on the philosophy that restricted movement in the spine may lead to pain and reduced function. Spinal adjustment (manipulation) is one form of therapy chiropractors use to treat restricted spinal mobility. The goal is to restore spinal movement and, as a result, improve function and decrease pain. Chiropractors manipulate the spine from different positions using varying degrees of force. Manipulation doesn't need to be forceful to be effective. Chiropractors may also use massage and stretching to relax muscles that are shortened or in spasm. Because manipulation has risks, always go to properly trained and licensed practitioners.
Massage therapy. This is one of the oldest methods of health care still in practice. It involves use of different manipulative techniques to move your body's muscles and soft tissues. The therapy aims to improve blood circulation in the muscle, increasing the flow of nutrients and eliminating waste products. Massage can reduce your heart rate, relax your muscles, improve range of motion in your joints and increase production of your body's natural painkillers. It often helps relieve stress and anxiety. Although massage is almost always safe, avoid it if you have open sores, acute inflammation or circulatory problems.
Fibromyalgia Lifestyle and home remedies
Self-care is critical in the management of fibromyalgia.
Reduce stress. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. But try not to change your routine completely. People who quit work or drop all activity tend to do worse than those who remain active. Try stress management techniques, such as deep-breathing exercises or meditation.
Get enough sleep. Because fatigue is one of the main characteristics of fibromyalgia, getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping.
Exercise regularly. At first, exercise may increase your pain. But doing it regularly often decreases symptoms. Appropriate exercises may include walking, swimming, biking and water aerobics. A physical therapist can help you develop a home exercise program. Stretching, good posture and relaxation exercises also are helpful.
Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days.
Maintain a healthy lifestyle. Eat healthy foods. Limit your caffeine intake. Do something that you find enjoyable and fulfilling every day.
Reduce stress. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. But try not to change your routine completely. People who quit work or drop all activity tend to do worse than those who remain active. Try stress management techniques, such as deep-breathing exercises or meditation.
Get enough sleep. Because fatigue is one of the main characteristics of fibromyalgia, getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping.
Exercise regularly. At first, exercise may increase your pain. But doing it regularly often decreases symptoms. Appropriate exercises may include walking, swimming, biking and water aerobics. A physical therapist can help you develop a home exercise program. Stretching, good posture and relaxation exercises also are helpful.
Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days.
Maintain a healthy lifestyle. Eat healthy foods. Limit your caffeine intake. Do something that you find enjoyable and fulfilling every day.
Fibromyalgia Treatments and drugs
In general, treatments for fibromyalgia include both medication and self-care. The emphasis is on minimizing symptoms and improving general health.
MedicationsMedications can help reduce the pain of fibromyalgia and improve sleep. Common choices include:
Analgesics. Acetaminophen (Tylenol, others) may ease the pain and stiffness caused by fibromyalgia. However, its effectiveness varies. Tramadol (Ultram) is a prescription pain reliever that may be taken with or without acetaminophen. Your doctor may recommend nonsteroidal anti-inflammatory drugs (NSAIDs) — such as aspirin, ibuprofen (Advil, Motrin, others) or naproxen sodium (Aleve, others) — in conjunction with other medications. NSAIDs haven't proved to be as effective in managing the pain in fibromyalgia when taken by themselves.
Antidepressants. Your doctor may prescribe amitriptyline to help promote sleep. Fluoxetine (Prozac) in combination with amitriptyline is effective in some people. Duloxetine (Cymbalta) may help ease the pain and fatigue associated with fibromyalgia. And milnacipran (Savella) was recently approved by the Food and Drug Administration for the treatment of fibromyalgia symptoms.
Anti-seizure drugs. Medications designed to treat epilepsy are often useful in reducing certain types of pain. Gabapentin (Neurontin) is sometimes helpful in reducing fibromyalgia symptoms, while pregabalin (Lyrica) is the first drug approved by the Food and Drug Administration to treat fibromyalgia.
Therapy
Physical therapy. Specific exercises can help restore muscle balance and may reduce pain. Stretching techniques and the application of hot or cold also may help.
Counseling. Cognitive behavioral therapy seeks to strengthen your belief in your abilities and teaches you methods for dealing with stressful situations. Therapy is provided through individual counseling, classes, and with tapes, CDs or DVDs, and may help you manage your fibromyalgia.
MedicationsMedications can help reduce the pain of fibromyalgia and improve sleep. Common choices include:
Analgesics. Acetaminophen (Tylenol, others) may ease the pain and stiffness caused by fibromyalgia. However, its effectiveness varies. Tramadol (Ultram) is a prescription pain reliever that may be taken with or without acetaminophen. Your doctor may recommend nonsteroidal anti-inflammatory drugs (NSAIDs) — such as aspirin, ibuprofen (Advil, Motrin, others) or naproxen sodium (Aleve, others) — in conjunction with other medications. NSAIDs haven't proved to be as effective in managing the pain in fibromyalgia when taken by themselves.
Antidepressants. Your doctor may prescribe amitriptyline to help promote sleep. Fluoxetine (Prozac) in combination with amitriptyline is effective in some people. Duloxetine (Cymbalta) may help ease the pain and fatigue associated with fibromyalgia. And milnacipran (Savella) was recently approved by the Food and Drug Administration for the treatment of fibromyalgia symptoms.
Anti-seizure drugs. Medications designed to treat epilepsy are often useful in reducing certain types of pain. Gabapentin (Neurontin) is sometimes helpful in reducing fibromyalgia symptoms, while pregabalin (Lyrica) is the first drug approved by the Food and Drug Administration to treat fibromyalgia.
Therapy
Physical therapy. Specific exercises can help restore muscle balance and may reduce pain. Stretching techniques and the application of hot or cold also may help.
Counseling. Cognitive behavioral therapy seeks to strengthen your belief in your abilities and teaches you methods for dealing with stressful situations. Therapy is provided through individual counseling, classes, and with tapes, CDs or DVDs, and may help you manage your fibromyalgia.
Fibromyalgia diagnosis process
Fibromyalgia symptoms or not? Understand the fibromyalgia diagnosis process
The sooner your fibromyalgia symptoms are diagnosed, the sooner they can be treated. Find out how to ensure you don't spend years searching for a fibromyalgia diagnosis.
If you have widespread pain, you and your doctor may wonder if you're experiencing fibromyalgia symptoms. But determining whether you do indeed have fibromyalgia symptoms isn't an easy process. It's not uncommon to spend years going from doctor to doctor and undergoing tests for conditions as varied as arthritis, depression and multiple sclerosis before reaching a fibromyalgia diagnosis.
The fibromyalgia diagnosis process can be frustrating. Here's a look at why it may take so long to go from fibromyalgia symptoms to fibromyalgia diagnosis and what you can do to make the process more efficient for you and your doctors.
Fibromyalgia symptoms: Not always as clear
Fibromyalgia can't be easily confirmed or ruled out through a simple laboratory test. Your doctor can't detect it in your blood or see it on an X-ray. Instead, your doctor relies on your symptoms. Unfortunately, fibromyalgia symptoms may vary widely from one person to the next.
The American College of Rheumatology (ACR) guidelines direct doctors making a fibromyalgia diagnosis to test 18 points on your body for tenderness. Your doctor puts light pressure with his or her fingers on each point to see whether you feel pain. ACR criteria state that pain at 11 of the points may indicate fibromyalgia. Even that guideline is controversial, though, and some specialists question whether it's useful because fibromyalgia symptoms may come and go. You may experience pain in one area of your body, rather than over your entire body.
To further complicate the diagnosis, you may experience signs and symptoms that are seemingly unrelated to fibromyalgia. Chronic stomachaches or headaches combined with the pain you're experiencing may lead your doctor to suspect other similar conditions first.
Excluding other possible causes for fibromyalgia symptoms
As your doctor moves toward a fibromyalgia diagnosis, he or she may want to rule out many diseases and conditions that mimic or are related to fibromyalgia. Testing for some of these diseases and conditions may make sense to you — for instance, you may find it reasonable that your doctor wants to rule out rheumatoid arthritis, since that disease also causes pain.
But the idea of tests for other conditions may be frightening. When your doctor suggests exams and tests for conditions such as cancer, kidney problems or multiple sclerosis, you may be alarmed.
Ruling out all of these conditions may be part of your diagnosis process. Talking openly with your doctor about your fears can help you understand what he or she is looking for with each test and how each test is part of making a final diagnosis.
Diseases and conditions similar to fibromyalgia
Ankylosing spondylitis
Lupus
Polymyalgia rheumatica
Carpal tunnel syndrome
Multiple sclerosis
Restless legs syndrome
Cushing's syndrome
Myasthenia gravis
Rheumatoid arthritis
Depression
Myositis
Sleep apnea
Hyperparathyroidism
Osteoarthritis
Sjogren's syndrome
Hypothyroidism
Peripheral neuropathy
What you can do
The sooner your doctor arrives at a fibromyalgia diagnosis, the sooner you can begin treatment to get your fibromyalgia symptoms under control. Here's what you can do to help yourself and your doctor during this process:
Understand what your doctor is looking for. Ask your doctor to explain each disease and condition he or she is testing for and why. Ask for reliable sources of further information. When you better understand the diagnostic process, you'll feel less frustrated. If your doctor orders a blood test to look for lupus, ask why. Does he or she think lupus is a more likely cause of your symptoms? Or does your doctor just want to rule lupus out?
If your doctor orders exams or sends you to a specialist for a condition that doesn't make sense to you, ask questions then, too. For example, if you’re referred to a neurologist, you may wonder if your doctor misunderstood your symptoms or perhaps didn't listen to you. Ask questions to clarify the reasoning.
Keep records of the tests and procedures you've undergone. Each time you see a new doctor or specialist, avoid having to start the diagnostic process all over again. Ask for records of the tests you undergo and the results. Sometimes there may be an advantage to having an exam or test repeated, but in many cases you may save time and money by showing your new doctor your records.
Many times your records will be forwarded to a new doctor or specialist. But that isn't always the case. In some instances the new doctor or specialist will receive only portions of your medical records.
Find the right doctor. Find a doctor you trust — someone who communicates well and is willing to work as a team with you. Not all doctors have a lot of knowledge about fibromyalgia, and some may even have outdated notions of the condition. If your health insurance plan allows, switch to a new doctor who is more suitable. Even if a doctor doesn't have a lot experience with fibromyalgia cases, a doctor who is interested in helping you and willing to learn more can be a good advocate for you.
If you feel that you aren't making progress toward a final diagnosis, it may be time to find a new doctor. Contact your health insurance plan to find out what doctors you're allowed to see. Ask friends and family for referrals. Contact the leaders of fibromyalgia support groups in your area for their recommendations. The National Fibromyalgia Association keeps a directory of support groups on its Web site.
Build a good relationship with your doctor. Whether with your current doctor or a new doctor, build a good partnership. Be open and honest with your doctor about concerns you may have about the diagnosis process. Avoid coming to appointments angry or making accusations. Tell your doctor you're frustrated and ask how you can help move things along. Ask your doctor to be open about what's frustrating or puzzling about your symptoms.
As you work with your doctor, also take steps to take care of yourself so that you can cope with the uncertainty of not having a definitive diagnosis. Reduce stress by taking time for yourself. Engage in stress-free activities, such as massage and deep breathing. Eat a healthy diet with a variety of fruit and vegetables. Tell your doctor if you're having trouble sleeping.
The sooner your fibromyalgia symptoms are diagnosed, the sooner they can be treated. Find out how to ensure you don't spend years searching for a fibromyalgia diagnosis.
If you have widespread pain, you and your doctor may wonder if you're experiencing fibromyalgia symptoms. But determining whether you do indeed have fibromyalgia symptoms isn't an easy process. It's not uncommon to spend years going from doctor to doctor and undergoing tests for conditions as varied as arthritis, depression and multiple sclerosis before reaching a fibromyalgia diagnosis.
The fibromyalgia diagnosis process can be frustrating. Here's a look at why it may take so long to go from fibromyalgia symptoms to fibromyalgia diagnosis and what you can do to make the process more efficient for you and your doctors.
Fibromyalgia symptoms: Not always as clear
Fibromyalgia can't be easily confirmed or ruled out through a simple laboratory test. Your doctor can't detect it in your blood or see it on an X-ray. Instead, your doctor relies on your symptoms. Unfortunately, fibromyalgia symptoms may vary widely from one person to the next.
The American College of Rheumatology (ACR) guidelines direct doctors making a fibromyalgia diagnosis to test 18 points on your body for tenderness. Your doctor puts light pressure with his or her fingers on each point to see whether you feel pain. ACR criteria state that pain at 11 of the points may indicate fibromyalgia. Even that guideline is controversial, though, and some specialists question whether it's useful because fibromyalgia symptoms may come and go. You may experience pain in one area of your body, rather than over your entire body.
To further complicate the diagnosis, you may experience signs and symptoms that are seemingly unrelated to fibromyalgia. Chronic stomachaches or headaches combined with the pain you're experiencing may lead your doctor to suspect other similar conditions first.
Excluding other possible causes for fibromyalgia symptoms
As your doctor moves toward a fibromyalgia diagnosis, he or she may want to rule out many diseases and conditions that mimic or are related to fibromyalgia. Testing for some of these diseases and conditions may make sense to you — for instance, you may find it reasonable that your doctor wants to rule out rheumatoid arthritis, since that disease also causes pain.
But the idea of tests for other conditions may be frightening. When your doctor suggests exams and tests for conditions such as cancer, kidney problems or multiple sclerosis, you may be alarmed.
Ruling out all of these conditions may be part of your diagnosis process. Talking openly with your doctor about your fears can help you understand what he or she is looking for with each test and how each test is part of making a final diagnosis.
Diseases and conditions similar to fibromyalgia
Ankylosing spondylitis
Lupus
Polymyalgia rheumatica
Carpal tunnel syndrome
Multiple sclerosis
Restless legs syndrome
Cushing's syndrome
Myasthenia gravis
Rheumatoid arthritis
Depression
Myositis
Sleep apnea
Hyperparathyroidism
Osteoarthritis
Sjogren's syndrome
Hypothyroidism
Peripheral neuropathy
What you can do
The sooner your doctor arrives at a fibromyalgia diagnosis, the sooner you can begin treatment to get your fibromyalgia symptoms under control. Here's what you can do to help yourself and your doctor during this process:
Understand what your doctor is looking for. Ask your doctor to explain each disease and condition he or she is testing for and why. Ask for reliable sources of further information. When you better understand the diagnostic process, you'll feel less frustrated. If your doctor orders a blood test to look for lupus, ask why. Does he or she think lupus is a more likely cause of your symptoms? Or does your doctor just want to rule lupus out?
If your doctor orders exams or sends you to a specialist for a condition that doesn't make sense to you, ask questions then, too. For example, if you’re referred to a neurologist, you may wonder if your doctor misunderstood your symptoms or perhaps didn't listen to you. Ask questions to clarify the reasoning.
Keep records of the tests and procedures you've undergone. Each time you see a new doctor or specialist, avoid having to start the diagnostic process all over again. Ask for records of the tests you undergo and the results. Sometimes there may be an advantage to having an exam or test repeated, but in many cases you may save time and money by showing your new doctor your records.
Many times your records will be forwarded to a new doctor or specialist. But that isn't always the case. In some instances the new doctor or specialist will receive only portions of your medical records.
Find the right doctor. Find a doctor you trust — someone who communicates well and is willing to work as a team with you. Not all doctors have a lot of knowledge about fibromyalgia, and some may even have outdated notions of the condition. If your health insurance plan allows, switch to a new doctor who is more suitable. Even if a doctor doesn't have a lot experience with fibromyalgia cases, a doctor who is interested in helping you and willing to learn more can be a good advocate for you.
If you feel that you aren't making progress toward a final diagnosis, it may be time to find a new doctor. Contact your health insurance plan to find out what doctors you're allowed to see. Ask friends and family for referrals. Contact the leaders of fibromyalgia support groups in your area for their recommendations. The National Fibromyalgia Association keeps a directory of support groups on its Web site.
Build a good relationship with your doctor. Whether with your current doctor or a new doctor, build a good partnership. Be open and honest with your doctor about concerns you may have about the diagnosis process. Avoid coming to appointments angry or making accusations. Tell your doctor you're frustrated and ask how you can help move things along. Ask your doctor to be open about what's frustrating or puzzling about your symptoms.
As you work with your doctor, also take steps to take care of yourself so that you can cope with the uncertainty of not having a definitive diagnosis. Reduce stress by taking time for yourself. Engage in stress-free activities, such as massage and deep breathing. Eat a healthy diet with a variety of fruit and vegetables. Tell your doctor if you're having trouble sleeping.
Fibromyalgia Tests and diagnosis
The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia:
Widespread pain lasting at least three months
At least 11 positive tender points — out of a total possible of 18
Tender pointsDuring your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor's fingernail bed. These 18 tender points are a hallmark for fibromyalgia.
Blood testsWhile there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:
Complete blood count
Erythrocyte sedimentation rate
Thyroid function tests
Widespread pain lasting at least three months
At least 11 positive tender points — out of a total possible of 18
Tender pointsDuring your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor's fingernail bed. These 18 tender points are a hallmark for fibromyalgia.
Blood testsWhile there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:
Complete blood count
Erythrocyte sedimentation rate
Thyroid function tests
Fibromyalgia Complications
Fibromyalgia isn't progressive and generally doesn't lead to other conditions or diseases. It can, however, lead to pain, depression and lack of sleep. These problems can then interfere with your ability to function at home or on the job, or maintain close family or personal relationships. The frustration of dealing with an often-misunderstood condition also can be a complication of the condition.
Fibromyalgia Risk factors
Risk factors for fibromyalgia include:
Your sex. Fibromyalgia occurs more often in women than in men.
Age. Fibromyalgia tends to develop during early and middle adulthood. But it can also occur in children and older adults.
Disturbed sleep patterns. It's unclear whether sleeping difficulties are a cause or a result of fibromyalgia. But people with sleep disorders — such as nighttime muscle spasms in the legs, restless legs syndrome or sleep apnea — often have fibromyalgia.
Family history. You may be more likely to develop fibromyalgia if a relative also has the condition.
Rheumatic disease. If you have a rheumatic disease, such as rheumatoid arthritis or lupus, you may be more likely to develop fibromyalgia.
Your sex. Fibromyalgia occurs more often in women than in men.
Age. Fibromyalgia tends to develop during early and middle adulthood. But it can also occur in children and older adults.
Disturbed sleep patterns. It's unclear whether sleeping difficulties are a cause or a result of fibromyalgia. But people with sleep disorders — such as nighttime muscle spasms in the legs, restless legs syndrome or sleep apnea — often have fibromyalgia.
Family history. You may be more likely to develop fibromyalgia if a relative also has the condition.
Rheumatic disease. If you have a rheumatic disease, such as rheumatoid arthritis or lupus, you may be more likely to develop fibromyalgia.
Fibromyalgia Causes
Doctors don't know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:
Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia.
Why does it hurt?Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals.
Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.
Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia.
Why does it hurt?Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals.
Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.
Fibromyalgia Symptoms
Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.
Widespread pain and tender pointsThe pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
Back of the head
Between shoulder blades
Top of shoulders
Front sides of neck
Upper chest
Outer elbows
Upper hips
Sides of hips
Inner knees
Fatigue and sleep disturbancesPeople with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.
Co-existing conditionsMany people who have fibromyalgia also may have:
Chronic fatigue syndrome
Depression
Endometriosis
Headaches
Irritable bowel syndrome (IBS)
Lupus
Osteoarthritis
Post-traumatic stress disorder
Restless legs syndrome
Rheumatoid arthritis
Widespread pain and tender pointsThe pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
Back of the head
Between shoulder blades
Top of shoulders
Front sides of neck
Upper chest
Outer elbows
Upper hips
Sides of hips
Inner knees
Fatigue and sleep disturbancesPeople with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.
Co-existing conditionsMany people who have fibromyalgia also may have:
Chronic fatigue syndrome
Depression
Endometriosis
Headaches
Irritable bowel syndrome (IBS)
Lupus
Osteoarthritis
Post-traumatic stress disorder
Restless legs syndrome
Rheumatoid arthritis
Fibromyalgia Definition
You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.
Wednesday, April 22, 2009
Why do I have to look sick to be sick?
If I get told “But you look fine” one more time I think I’m going to scream! What does looking sick have to do with being sick. My neighbor of 15 years got breast cancer, (she has since died she was such a great lady too). She looked fine in the beginning and for many years, but no one ever said “But you look fine” to her. Even my STUPID Sister in-law who has AID’S looks fine, but she is still sick. So why can’t I be sick and look fine. I can’t help the fact that I like to shower and keep on clean clothes when I go out. I want to take pictures of my self when I’m at home and then show them and let’s see how fine I look then.
Ok there is a reason for my vent. I was at work and not too happy to be there. I had a major Fibro Flair this weekend. So I bent down to pick some thing up and when I stood back up I winced and groaned. It hurts to bend down. The lady asked if I was all right and my co-worker told the lady that I have Fibro. The lady looked at me and said “But you look fine” I looked at her and said “WELL IM NOT FINE” I shouted it. I freaked out my co-worker Nichole. She is so nice and helps me so much at work. She looked at me and took a step back she has never seen me be mad or rude to a customer. I always have a smile on my face even to the snot nosed little brats that want extra every thing in there drink. It shut up that lady, and Nichole started laughing after she left. Nichole is young, but is willing to learn and listens when I tell her all about Fibro. She may not get it, but she knows I have good days and bad ones and can tell by looking at me if in ok or not. I’ve worked with her for over a year now. She is taking me out to lunch today for my B-day. I just get tired of people thinking that you have to look sick to be sick and that Fibro is only about pain and nothing else. Its been a long day.
Ok there is a reason for my vent. I was at work and not too happy to be there. I had a major Fibro Flair this weekend. So I bent down to pick some thing up and when I stood back up I winced and groaned. It hurts to bend down. The lady asked if I was all right and my co-worker told the lady that I have Fibro. The lady looked at me and said “But you look fine” I looked at her and said “WELL IM NOT FINE” I shouted it. I freaked out my co-worker Nichole. She is so nice and helps me so much at work. She looked at me and took a step back she has never seen me be mad or rude to a customer. I always have a smile on my face even to the snot nosed little brats that want extra every thing in there drink. It shut up that lady, and Nichole started laughing after she left. Nichole is young, but is willing to learn and listens when I tell her all about Fibro. She may not get it, but she knows I have good days and bad ones and can tell by looking at me if in ok or not. I’ve worked with her for over a year now. She is taking me out to lunch today for my B-day. I just get tired of people thinking that you have to look sick to be sick and that Fibro is only about pain and nothing else. Its been a long day.
Tuesday, April 21, 2009
The Fibromyalgia Letter
Hello Family, Friends, and Anyone Wishing to Know Me!
How do I explain this to you my family and friends? This is very difficult to do as my illness is "unseen." So allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated
{{{Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain. Myofascial pain syndrome is a chronic form of muscle pain. The pain of Myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.}}}
I want to talk to you about fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
I cannot show you a physically open wound to show how much pain I’m in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....
You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don't have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it "sending in the troops." Anytime I do not seem in touch with reality.
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same "wrong" decisions over and over again. Why haven't I learned by this time? Why can't I see the senselessness of my behavior? I may seem to be getting my life together and them bottom out all over again.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're soundingbetter!" I am not sounding better, I am sounding happy.
What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in Fibro Flair. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this.
{{{While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses}}}
This is why I feel like a child at times. Just the other day I put the egg’s I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the keys, only to find them in the freezer. As I try to maintain my dignity the Demon assaults me at every turn.
I have a physical illness and it isn't my fault and I didn't ask for it I don't want it and I don’t deserve it.
{{{Occurring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.}}}
Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don’t understand.
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
All I ask is that you become educated about fibromyalgia. I am someone in your life that suffers from fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.
{{{Lend a helping hand. If you want to be helpful to someone with fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of fibromyalgia is overwhelming. Be active. Accompany them to a doctor’s appointment and take an active interest in their treatment. You can take notes at the doctor’s office and then review your notes together at home. Don't take things personally. Some people with fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.}}}
So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.
Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.
So I Need You To Please Understand Me
Please fell free to pass this letter along to any one or post it.
How do I explain this to you my family and friends? This is very difficult to do as my illness is "unseen." So allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated
{{{Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain. Myofascial pain syndrome is a chronic form of muscle pain. The pain of Myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.}}}
I want to talk to you about fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
I cannot show you a physically open wound to show how much pain I’m in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....
You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don't have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it "sending in the troops." Anytime I do not seem in touch with reality.
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same "wrong" decisions over and over again. Why haven't I learned by this time? Why can't I see the senselessness of my behavior? I may seem to be getting my life together and them bottom out all over again.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're soundingbetter!" I am not sounding better, I am sounding happy.
What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I’ll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I’m in Fibro Flair. You may wonder what you said or did that made me this way. Well you did nothing it’s the Fibromyalgia and all its underlining factors causing this.
{{{While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses}}}
This is why I feel like a child at times. Just the other day I put the egg’s I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the keys, only to find them in the freezer. As I try to maintain my dignity the Demon assaults me at every turn.
I have a physical illness and it isn't my fault and I didn't ask for it I don't want it and I don’t deserve it.
{{{Occurring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.}}}
Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
Just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don’t understand.
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
All I ask is that you become educated about fibromyalgia. I am someone in your life that suffers from fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.
{{{Lend a helping hand. If you want to be helpful to someone with fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of fibromyalgia is overwhelming. Be active. Accompany them to a doctor’s appointment and take an active interest in their treatment. You can take notes at the doctor’s office and then review your notes together at home. Don't take things personally. Some people with fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.}}}
So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.
Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.
So I Need You To Please Understand Me
Please fell free to pass this letter along to any one or post it.
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