For those who do not understand fibromyalgia

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. Over 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 that, unfortunately for the patient, are present at the same time. Rheumatoid arthritis and lupus are also syndromes.

Most symptoms and emotional problems associated with fibromyalgia are not of psychological origin.

This is not a disorder where “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 pains  – My pains are not your pains. It is not caused by inflammation. Taking your arthritis medicine does not help me. I can not work, because my body does not resist. There is no pain that only remains 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 that reach my brain incorrectly, possibly due to sleep disorders. This is not very understood, but it is real.

2. My fatigue:   not only do I feel very tired. I’m seriously 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 today I can not help but clean the garden, it is not because I do not want to. I pay the price for stressing the muscles beyond their capacity.

3. My concentration problems. All of us who suffer from fibromyalgia call these problems “fibro-trains”. Maybe I do not remember your name, but I do remember your face. You may not remember what I promised to do for you, even if you had told me just a few seconds before. My problem has nothing to do with age, but it may be related to sleep disorders. I have no selective memory. Some days I have no short-term memory.

My clumsiness: if I get up or run after the crowd, I will not chase you. I have no control over my muscles to do that. If you’re behind me on a ladder, be patient. These days I take life and every 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 loud or low noise, odors. Fibromyalgia has been called “the disorder that aggravates everything”.

6. My intolerance: I do not tolerate heat or moisture. If I’m a man, I sweat profusely. If I’m a woman, too. And do not be surprised if I move without control when it is cold. I can not stand the cold either. My internal thermostat is broken and no one knows how to fix it.

7. My depression: Yes, there are days when I prefer to lie in bed, 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 does not handle stress well. If I have to quit work, work part-time or delegate my responsibilities at home, it’s not because I’m lazy. Daily stress can make my symptoms worse and disable me completely.

9. My weight: I can be overweight or thin. In any case, it has not been my choice. My body is not your body. My appetite is affected and no one knows how to fix them.

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 pain in a leg last week, now I feel it all over my 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 I’m fine. I suffer from chronic pain and fatigue that has no cure. I can have good mornings, weeks or months. It’s actually good morning that lets me move on.

12. My individuality: even those who suffer from fibromyalgia are not the same. That means I can not have all the symptoms mentioned. I may have migraines, pain in my hips, shoulders or knees, but I do not have exactly the same pain as someone with this condition.
I hope this helps you understand me, but if you still doubt pain, bookstore, 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 do not take the pain of these people lightly. You do not want to spend a day in their shoes or on 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.

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