“If you were born with healthy genes, you may know me, but you don’t understand me. I wasn’t as lucky as you. I have a predisposition to suffer chronic pain, fatigue and concentration problems. I was diagnosed with fibromyalgia after months, years, or perhaps decades of physical and emotional problems. Since you didn’t know how sick you were, you called me lazy, pretending to be sick for not working, or just 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 from the University of Edinburgh, William Balfour, described fibromyalgia. Over time, it has been described as chronic rheumatism, myalgia, or fibrositis. Unlike diseases, syndromes like fibromyalgia have no known cause, but are a group of signs and symptoms that, 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 psychological in origin.
This is not a disorder where “everything is on 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 depressing, interfering with the simplest 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 arthritis medications won’t help me. I cannot work, because my body does not resist. It is not the pain that remains only in one part of the body. Today it’s on my shoulder, but tomorrow it may be on one foot, or maybe it’s gone. My pain is caused by signals reaching my brain incorrectly, possibly due to sleep disorders. This is not well understood, but real.
2. My fatigue- Not only do I feel very tired. I’m very exhausted. I would like to participate in physical activities, but I cannot. Please don’t take it personally. If you saw me buy yesterday, but today I can’t avoid cleaning the patio, it’s not because I don’t want to. I am paying the price for stressing my muscles beyond their capacity.
3. My concentration problems: we all call fibromyalgia sufferers “fibro mist”. Maybe I don’t remember your name, but I remember your face. You may not remember what I promised to do for you, even if you told me just a few seconds earlier. My problem has nothing to do with age, but it may be related to sleep disturbance. I have no selective memory. Some days, I even have no short-term memory.
4. My clumsiness: if I start to walk or run after you in the crowd, I’m not chasing. I have no control of my muscles to do that. If you are behind me on a ladder, be patient. These days, I take life and each step one at a time.
5. My sensitivity – I can’t stay here! This may be due to certain factors, such as bright light, very high or low noise, odors. Fibromyalgia has been called “the disorder that aggravates everything.”
6. My intolerance – I can’t stand the heat or the humidity. If I am a man, I will sweat profusely. If I am also a woman. And don’t be surprised if I move uncontrollably when it’s cold. I also can’t stand the cold. My internal thermostat is broken and nobody knows how to repair it.
7. My depression: yes, there are days when I prefer to stay in bed, at home or die. Severe pain is unrelenting and can cause depression. Your sincere interest and understanding can lift me out of the abyss.
8. My stress- My body cannot handle stress well. If I have to stop working, work part time or delegate my responsibilities at home, it is not because I am lazy. Daily stress can worsen my symptoms and completely incapacitate me.
9. My weight: I can be overweight or I can be thin. Be that as it may, it was not 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 on my body can do if the pain in one leg last week is now felt all over my body. Massage can be very painful; but I need it. Massaging regularly can help, at least for a while.
11. My good morning: If you see me smile and function normally, don’t assume 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 is good morning that allows me to move on.
12. My individuality. Even those who suffer from fibromyalgia are not the same. That means you may not have all of the symptoms mentioned. I may have a migraine, hip, shoulder, or knee pain, but I don’t have exactly the same pain as anyone with this condition.
I hope this helps you understand me, but if you still doubt my pain, your bookstore, your library or the Internet, they have good books and articles on fibromyalgia.
Author’s Note: This letter is based on conversations with women and men with fibromyalgia worldwide. 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 don’t take the pain of these people lightly. You don’t want to spend a day in their shoes, or in their bodies. Fibromyalgia is not something we choose to have, but if we do, we must reach a point where we accept the condition as part of our lives.