What you need to know about fibromyalgia:
Fibromyalgia is not a new disease. In 1815, a surgeon at the University of Edinburgh, William Balfour, described fibromyalgia. Over time, chronic rheumatism, muscle pain or fibrosis have been described. Unlike diseases, syndromes such as fibromyalgia have no known cause but form a group of signs and symptoms that unfortunately exist for the patient at the same time. Rheumatoid arthritis and lupus are also syndrome.
Most of the symptoms and emotional problems associated with fibromyalgia are not of psychological origin.
It is not a condition where “everything is in your head”. In 1987, the American Medical Association recognized fibromyalgia as a true physical condition and a major cause of disability.
Fibromyalgia can be debilitating and depressing, facilitating everyday activities.
What you need to know about me:
1. My pain – my pain is not your pain. It is not caused by inflammation. Taking your arthritis medication does not help me. I can’t work because my body can’t resist. It is not a pain that remains in only one part of the body. Today is on my shoulder, but tomorrow he may be on one foot, or he may be gone. My pain is caused by signals coming out of my brain, possibly due to sleep disorders. It is not well understood, but it is true.
2. My fatigue: I don’t feel very tired. I am very exhausted. I want to participate in physical activities, but I can’t. Don’t take it personally. If you saw me yesterday to go shopping, but today I can’t help but clean the garden, it’s not because I don’t want to. I pay the price for exerting my muscles beyond their means.
3. My concentration problems. All of us who suffer from fibromyalgia call these problems “fibro-fog.” I may not remember your name, but I do remember your face. You may not remember what I promised to do to you, even if you told me just a few seconds earlier. My problem has nothing to do with age, but it may have to do with sleep disorders. I have no selective memory. Some days I don’t even have the short-term memory.
4. My clumsiness: when I get up or walk behind the crowd, I don’t chase you. I can’t control my muscles to do this. Be patient if you stand on a ladder behind me. These days I take life and every step of the way.
5. My sensitivity – I can’t stay here! This may be due to certain factors, such as strong light, very loud or low noise, odor. Fibromyalgia is called the disorder that makes everything worse.
6. My intolerance: I can’t resist heat or moisture. When I’m a man, I sweat profusely. If I’m a woman too. And don’t be surprised if I get out of control when it’s cold. I can’t stand the cold either. My internal thermostat is broken and nobody knows how to fix it.
7. My Depression: Yes, there are days when I prefer to stay in bed, go home or die. Severe pain is relentless and can cause depression. Your sincere interest and understanding can take me out of the abyss.
8. My Stress – My body can’t handle stress well. If I have to stop working, work part time or delegate my responsibilities at home, it’s not because I’m lazy. Daily stress can aggravate my symptoms and turn me off completely.
9. My weight: I can be too fat or thin. Either way, it wasn’t my choice. My body is not your body. My appetite is affected and no one knows how to fix it.
10. My Need for Therapy: Don’t envy me if I need a daily massage. My massage is not your massage. Imagine what a massage in my body can do like the pain in one leg last week, now I feel it all over my body. The massage can be very painful; but I need it. Massaging regularly may help for a while.
11. My good days – if you see me smiling and functioning normally, don’t assume that I’m feeling good. I suffer from chronic pain and fatigue that cannot be cured. I can experience my good morning, weeks or even months. It’s actually tomorrow that I can move on.
12. My Individuality: Even those who suffer from fibromyalgia are not the same. This means I did not mention all the symptoms above. I have migraines, pain in the hips, shoulders or knees, but I do not have the exact same pain as someone with this condition.
I hope this helps you understand me, but if you still have doubts in 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 discussions with women and men with fibromyalgia around the world. It does not represent one in ten million people with fibromyalgia in the world, but it can help healthy people understand how devastating this condition can be. Don’t take the pain of these people. You don’t want to spend a day in their shoes or on their body. 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.