Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
A letter to the Healthy World From
The Land of Chronic Pain and Fatigue*
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
FMS is not the newest fad disease. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.
The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. However please remember, stress can affect the body, just as physical pain can affect the mind, causing stress and depression. If someone needs help in coping or dealing with depression, they should see a therapist or Psychiatrist, but it does not mean they are "crazy." It may help you to find methods of coping!
In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability. It is recognized as a disabling condition by the ARTHRITIS FOUNDATION, THE SOCIAL SECURITY ADMINISTRATION and the MAYO CLINIC, among others.
This syndrome may strike life-long athletes as viciously as it does couch potatoes. It can be disabling and depressing, interfering with even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
(Keep in mind that these things may apply to some, not all of fibro patients)
My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real and very painful.
My fatigue - I am not merely tired, I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.
My clumsiness - If I stomp on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So try to understand if I must decline certain invitations, or go home suddenly. I really can't stand it.
My intolerance - Perhaps I can't stand heat, either, or humidity. I may sweat, profusely. Some people cannot sweat at all and so the heat is even more unbearable! Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And, don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's "patients" suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro, not a cause of it. Some days I may just feel like giving up. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Every day stresses make my symptoms worse and can incapacitate me completely.
My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe Irritable Bowel Syndrome and lose weight.
My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.
My good days - If you see me smiling and functioning normally, don't assume I am well. I am having a good day but I am not cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
My uniqueness - Even those who suffer from FMS are not alike. That means not every fibro sufferer may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
~~~~~~~~~~~~~~~~~~~~~~~
Authors' note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one individual of the over 10,000,000 people with FMS, it represents all of them. It hopefully can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes, or their bodies.
*There are many letters of this type to be found on the internet. This one was written specifically for THE FIBRO WELCOME PACKAGE by Micki and Rose.
If you would like a click and print version to share with others please go to
http://www.fibrowelcomepackage.com
The Land of Chronic Pain and Fatigue*
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
FMS is not the newest fad disease. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.
The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. However please remember, stress can affect the body, just as physical pain can affect the mind, causing stress and depression. If someone needs help in coping or dealing with depression, they should see a therapist or Psychiatrist, but it does not mean they are "crazy." It may help you to find methods of coping!
In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability. It is recognized as a disabling condition by the ARTHRITIS FOUNDATION, THE SOCIAL SECURITY ADMINISTRATION and the MAYO CLINIC, among others.
This syndrome may strike life-long athletes as viciously as it does couch potatoes. It can be disabling and depressing, interfering with even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
(Keep in mind that these things may apply to some, not all of fibro patients)
My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real and very painful.
My fatigue - I am not merely tired, I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.
My clumsiness - If I stomp on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So try to understand if I must decline certain invitations, or go home suddenly. I really can't stand it.
My intolerance - Perhaps I can't stand heat, either, or humidity. I may sweat, profusely. Some people cannot sweat at all and so the heat is even more unbearable! Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And, don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's "patients" suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro, not a cause of it. Some days I may just feel like giving up. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Every day stresses make my symptoms worse and can incapacitate me completely.
My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe Irritable Bowel Syndrome and lose weight.
My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.
My good days - If you see me smiling and functioning normally, don't assume I am well. I am having a good day but I am not cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
My uniqueness - Even those who suffer from FMS are not alike. That means not every fibro sufferer may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
~~~~~~~~~~~~~~~~~~~~~~~
Authors' note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one individual of the over 10,000,000 people with FMS, it represents all of them. It hopefully can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes, or their bodies.
*There are many letters of this type to be found on the internet. This one was written specifically for THE FIBRO WELCOME PACKAGE by Micki and Rose.
If you would like a click and print version to share with others please go to
http://www.fibrowelcomepackage.com
Hugs, Micki
Dont be fearful of seeing it in print..getting this truth OUT THERE is how we will one day get help.
Hugs Micki
http://www.fibrowelcomepackage.com
That is why we made it Click and print..in fact someone right here on DS suggested we do that last year and I took the suggestion to our webmaster and she made that change then and there.. we try to make the WELCOME PACKAGE something that people can actually use....so it can be shared with family friends and support groups..
WE are always open to new ideas or suggestions.. just write to me with any ideas or requests you might have for us..
Hugs Micki
http://www.fibrowelcomepackage.com
You are right. we dont always know how people will respond.. but I think we have to try anyway.. If people( family friends) openly criticize us then they are fair game if you ask me and need to be educated about fibro...also there may be people you just feel close to an want to share information with ..when I was first diagnosed , my dad lived with ( he has since passed away)..the first book I had was the devon starlanyl book and I left it in his room.. one night I went in and HE WAS READING IT!! HE was one of those old timers that did not belive in going to doctors etc.. just take a hot cup of tea and go to work..that is what he did all his life..He never really said much but I think he did understand better...
There are many good letters out there.. I put this up cause it is from my website and I wrote it from my own heart... but if you find one better ..such as on fibrohugs use what works for you..or even write your own!
But we do need to educate people..especially the ones closest to us.
Hugs, Micki.