For those who do not understand fibromyalgia

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, it has been described as chronic arthritis, myalgia or fibrositis. In contrast to 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 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 deactivating and depressive, disrupting simpler daily activities.

-What would you 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 not work because my body does not resist. It is not pain that remains in only 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 disturbances. This is not very well understood, but it is genuine.

2. My fatigue:   not only do I feel very tired. I’m very 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 clean the garden, it’s not because I do not want to. I pay 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 can remember your face. You may not remember what I promised to do for you, even if you had told me a few seconds before. My problem has nothing to do with age, but it may be related to sleep disorder. I have no selective memory. Some days I don’t even have a short-term memory.

4. My clumsiness: if I get up or run after the crowd, I will not chase after 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 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 can not stand heat or humidity. If I’m a man, I’m sweating profusely. If I’m a woman too. And do not be surprised if I move without control when it is cold. I do not tolerate 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 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 cannot 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 disable me completely.

9. My weight: I may be overweight or thin. Either way, it has not been 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: 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 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 can help, at least for a while.

11. My good days – If you see me smile and function normally, do not assume that I am well. 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 may not have all of 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 disorder.
I hope this helps you understand me, but if you still have doubts about 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 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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