Last year I was diagnosed with Fibromyalgia (fib) - I am writing this to explain to family, friends and acquaintances what it is I am dealing with. I hope you take the time to read it.
If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months of mysterious physical and emotional problems.
Because you didn't know how sick I was, and how sick I am you may have called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, 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.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.
4. There isn't a fix it cure, I just have to deal with the symptoms and try to live my life!
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. I wish I could just 'suck it up' sometimes. 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 real.
2. 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 yesterday, but I can't help you with decorating today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. 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 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. It is not intentional.
4. My clumsiness - If I step 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. This last moth I take it with a walking stick on bad days! I'm only 27...
5. 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 don't make me open the drapes or listen to your child scream. I really can't stand it some days.
6. My intolerance - I can't stand heat, either. Or humidity. I perspire more than normal on bad days, it can be 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.
7. 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. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge. I do not want nor need your pity. It doesnt help me at all. I do not want to hear how sorry you are that I have to deal with this day in and day out. All I ask is that you do your own research, and try to understand it. Sometimes bad days are just too much, and there isn't always room to continue to pretend that everything is sunshine and rainbows. I get grumpy and angry, and I'm not trying to take it out on you, but pain can do horrible things not only to body, but my brain as well. Just know that I love you, you are important to me, but right now, my pain takes precedence over everything and everyone else in my life. I've already lost people over my illness, I'm not meaning to be a bit of a bitch, I'm really not.
8. My stress - My body does not handle stress well. If I have to semi retire, work part time, and handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - This goes up and down drastically. I don't want to hear that I look skinny or fat this week. 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. I love my body no matter what, even though its so broken!
10. My need for therapy - If I get a massage regularly, 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 has to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily. I need more massages!
11. My good days - If you see me smiling and functioning normally, don't assume I am well. 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 pretty much the only thing that keeps me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means they may not have all of the problems mentioned above. These are far from all the problems I deal with. 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 have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I know you can't 'see' my illness, but it is real. I hope that this helps you understand me and makes you think when you lol at my walking stick or early nights or get mad because I have to change plans (if I remember them that is) If you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
Hooray for the good days :)
Thank you for reading this!
If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months of mysterious physical and emotional problems.
Because you didn't know how sick I was, and how sick I am you may have called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, 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.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.
4. There isn't a fix it cure, I just have to deal with the symptoms and try to live my life!
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. I wish I could just 'suck it up' sometimes. 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 real.
2. 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 yesterday, but I can't help you with decorating today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. 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 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. It is not intentional.
4. My clumsiness - If I step 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. This last moth I take it with a walking stick on bad days! I'm only 27...
5. 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 don't make me open the drapes or listen to your child scream. I really can't stand it some days.
6. My intolerance - I can't stand heat, either. Or humidity. I perspire more than normal on bad days, it can be 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.
7. 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. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge. I do not want nor need your pity. It doesnt help me at all. I do not want to hear how sorry you are that I have to deal with this day in and day out. All I ask is that you do your own research, and try to understand it. Sometimes bad days are just too much, and there isn't always room to continue to pretend that everything is sunshine and rainbows. I get grumpy and angry, and I'm not trying to take it out on you, but pain can do horrible things not only to body, but my brain as well. Just know that I love you, you are important to me, but right now, my pain takes precedence over everything and everyone else in my life. I've already lost people over my illness, I'm not meaning to be a bit of a bitch, I'm really not.
8. My stress - My body does not handle stress well. If I have to semi retire, work part time, and handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - This goes up and down drastically. I don't want to hear that I look skinny or fat this week. 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. I love my body no matter what, even though its so broken!
10. My need for therapy - If I get a massage regularly, 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 has to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily. I need more massages!
11. My good days - If you see me smiling and functioning normally, don't assume I am well. 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 pretty much the only thing that keeps me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means they may not have all of the problems mentioned above. These are far from all the problems I deal with. 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 have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I know you can't 'see' my illness, but it is real. I hope that this helps you understand me and makes you think when you lol at my walking stick or early nights or get mad because I have to change plans (if I remember them that is) If you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
Hooray for the good days :)
Thank you for reading this!
