“If you were born with healthy genes, maybe you know me, but you do not understand me. I was not as lucky as you. I have a predisposition to suffer from chronic pain, fatigue and concentration problems. I was diagnosed with fibromyalgia after months, years or maybe decades of physical and emotional problems. Because you did not know how sick you were, you called me lazy, pretending to be sick for not working, or just plain ridiculous. If you have time to read this, I want to help you understand how different you and I are. ”
-What you should know about fibromyalgia:
Fibromyalgia is not a new disease. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. With the passage of time, it has been described as chronic rheumatism, myalgia or fibrositis. Unlike diseases, syndromes such as fibromyalgia do not have a known cause, but they are a group of signs and symptoms which, unfortunately for the patient, are present at the same time. Rheumatoid arthritis and lupus are also syndromes.
Most of the symptoms and emotional problems associated with fibromyalgia are not of psychological origin.
This is not a disorder in which “everything is in your mind”. In 1987, the American Medical Association recognized fibromyalgia as a real physical condition and a major cause of disability.
Fibromyalgia can be disabling and depressive, interfering with simpler daily activities.
-What you should know about me:
1. My pain- My pain is not your pain. It is not caused by inflammation. Taking your medicines for arthritis will not help me. I can not work, because my body does not resist. It is not pain that stays only in one part of the body. Today is on my shoulder, but tomorrow it may be on one foot, or maybe it’s gone. My pain is caused by the signals coming to my brain improperly, possibly due to sleep disturbances. This is not very understood, but real.
2. My fatigue- Not only do I feel very tired. I am severely exhausted. I would like to participate in physical activities, but I can not. Please, do not take it personally. If you saw me shopping yesterday, but I can not help cleaning the yard today, it’s not because I do not want to do it. I am paying the price for stressing my muscles beyond their capacity.
3. My problems of concentration- Everyone (as) who suffers from fibromyalgia we call those problems “fibro fog”. Maybe I do not remember your name, but I remember your face. You may not remember what I promised to do for you, even if you told me only seconds before. My problem has nothing to do with age, but maybe it is related to sleep disturbance. I have no selective memory. Some days, even, I have no short-term memory.
4. My clumsiness – If I step on your feet or run after you in the crowd, I’m not chasing you. I do not have control of my muscles to do that. If you are behind me on a ladder, please be patient. These days, I take life and each step one at a time.
5. My sensitivity – I can not stay here! This may be due to certain factors, such as bright light, very high or low noises, smells. Fibromyalgia has been called “the disorder that aggravates everything”.
6. My intolerance – I can not stand the heat, or the humidity. If I am a man, I will sweat profusely. If I’m a woman, too. And do not be surprised if I move without control when it’s cold. I also do not tolerate the cold. My internal thermostat is broken, and nobody knows how to fix it.
7. My depression- Yes, there are days that I prefer to stay in bed, or at home, or die. Severe pain is relentless and can cause depression. Your sincere interest and understanding can get me out of the abyss.
8. My stress- My body can not handle stress well. If I have to stop working, work part-time or delegate my responsibilities in the home, it’s not because I’m lazy. Daily stress can make my symptoms worse and completely incapacitate me.
9. My weight- I can be overweight or I can be thin. Be as it is, it has not been my choice. My body is not your body. My appetite is affected and there is no one who knows how to fix it.
10. My need for therapy- If I need a daily massage, do not envy me. My massage is not your massage. Consider what a massage in my body can do if the pain of a leg last week, now I feel it in the whole body. The massage can be very painful; but I need it. Massage regularly can help, at least for a while.
11. My good days- If you see me smile and function normally, do not assume that I feel good. I suffer from chronic pain and fatigue that has no cure. I can have my good days, weeks or even months. In fact, it’s good days that allow me to move on.
12. My individuality- Even the ones we suffer from fibromyalgia, we are not the same ones. That means that I may not have all the symptoms mentioned. I can have migraine, pain in the hips, shoulders or knees, but I do not have exactly the same pain as anyone with the condition. I hope this helps you understand me, but if you still doubt my pain, your bookstore , library or through the Internet, have good books and articles on fibromyalgia. Note of the author: This letter is based on conversations with women and men with fibromyalgia throughout the world. This does not represent any of the 10 million people with fibromyalgia in the world, but it can help healthy people understand how devastating this condition can be. Please, do not take the pain of these people lightly. You do not want to spend a day in their shoes, or in their bodies. Fibromyalgia is not something that we choose to have, but if we do, we must reach a point where we accept the condition as part of our lives.