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. 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 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 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, which interferes 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 arthritis medication will not help me. I can not work, because my body does not resist. It is not pain that remains 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 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 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 today I can not help cleaning the yard, it’s not because I do not want to. I am paying the price for stressing my muscles beyond their capacity.

3. My concentration problems. All of us who suffer from fibromyalgia call these 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 had told me just a few seconds before. My problem has nothing to do with age, but it may be related to sleep disturbance. I have no selective memory. Some days, even, I have no short-term memory.

4. My clumsiness: if I stand up or run after 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, 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 loud or low noises, smells. Fibromyalgia has been called “the disorder that aggravates everything”.

6. My intolerance: I can not stand heat or 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 when I prefer to stay 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 can not 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 make my symptoms worse and disable me completely.

9. My weight: I can be overweight or thin. Either way, 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. Massaging 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 morning, weeks or even months. In fact, it’s good morning that allows me to 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 a migraine, pain in my hips, shoulders or knees, but I do not have exactly the same pain as anyone with this condition.
I hope this helps you to understand me, but if you still doubt my pain, your bookstore, your library or through 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 around 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 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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