For those who don’t 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 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 psychological in origin.

This is not an “all in your head” disorder. 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 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 is not helping me. I can’t work because my body can’t resist. It is not pain that only remains in one part of the body. Today it’s on my shoulder, but tomorrow it could be on a foot, or maybe it’s gone. My pain is caused by signals reaching my brain incorrectly, possibly due to sleep disturbances. This is not widely understood, but it is real.

2. My tiredness:   not only do I feel very tired. I am seriously exhausted. I would like to participate in physical activities, but I can’t. Please don’t take it personally. If you saw me shopping yesterday, but today I can’t help cleaning the garden, it’s not because I don’t 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 trains”. 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 had told me just seconds before. My problem has nothing to do with age, but it may be related to a sleep disorder. I have no selective memory. Some days I have no short term memory.

4. My awkwardness: if I stand up or run after the crowd, I’m not chasing you. I don’t have the control over my muscles to do that. If you’re standing 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 can be due to certain factors, for example bright light, very loud or low noise, smells. Fibromyalgia has been called “the disorder that makes everything worse”.

6. My intolerance: I can’t stand heat or humidity. If I’m a man, I sweat profusely. If I’m a woman, too. And don’t be surprised if I move out of control when it’s cold. I can’t 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’d rather be in bed, at home, or dead. 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 cope well with stress. 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 completely disable me.

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, don’t 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 in my whole 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 smiling and functioning normally, don’t assume I’m fine. I suffer from chronic pain and fatigue that has no cure. I can have good mornings, weeks or months. It is actually good morning that allows me to move on.

12. My individuality: even fibromyalgia sufferers are not the same. It means that I cannot have all the symptoms mentioned. I may have migraines, pain in my hips, shoulders or knees, but I don’t have exactly the same pain as someone with this condition.
I hope this helps you understand me, but if you still have doubts about pain, bookstores, libraries, or the Internet 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 don’t take the pain of these people lightly. You don’t 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 have to reach a point where we accept the condition as part of our lives.

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