If you love someone with fibromyalgia, experience intense pain that varies from day to day and hour to hour. We cannot predict this. So we want you to understand that sometimes things have to be canceled at the last minute and that bothers us as much as you do.
We want you to know that we have to learn to accept our body with its limitations, and it’s not easy. Fibromyalgia cannot be cured, but we try to relieve symptoms every day. We ask not to suffer from it.
Often we feel overwhelmed and can’t handle more stress than we do. If possible, don’t add extra stress to my body.
Although we see well, we do not feel well. We have learned to live with constant pain most of the time. When you see us happy, it doesn’t necessarily mean we don’t have a problem, we just take care of it. Some people think we can’t be so bad if we’re good. The pain is not. It is a chronic “invisible” disease and it is not easy for us to have it.
Please understand, because we can’t work and we are not vague. Our fatigue and pain are unpredictable and, for this reason, we have to adapt our way of life. What seems simple and easy to do is not for us and can cause us a lot of fatigue and pain. It’s not necessarily something we did yesterday, we can do it today, but that doesn’t mean we can’t do it either.
Sometimes we are depressed. Who wouldn’t be depressed by strong and constant pain? Depression has been found to occur with equal frequency in fibromyalgia as in any other chronic pain condition. Being depressed hurts us, but we are depressed by the pain and the inability to do what we used to. We also feel bad when there is no support and understanding from doctors, family and friends. Please understand me, with your support and help, alleviate my pain.
While we sleep through the night, we don’t get enough rest. People with fibromyalgia have poor sleep quality, which causes the worst pains of the day when they sleep poorly.
For us, it is not easy to stay in the same position (although in the seats) for a long time. It causes us a lot of trouble and takes time to recover. Why not leave some activities, we know that factor would harm us. Sometimes we know very well the consequences that this will bring.
We don’t go crazy if we sometimes forget simple things, what we say, someone’s name or the wrong word. These are cognitive issues that are part of fibromyalgia, especially on days when we have a lot of pain. It’s a strange thing for you and me. But we laugh together and help keep our sense of humor.
Most people with fibromyalgia know this disease very well, some doctors and others because we have had to educate ourselves to understand our bodies. So please if you offer me a “cure” don’t. Not because I don’t appreciate your help or improvement, but because I stay informed and have tried many things.
We are very happy when we have a day with little or no pain when we sleep, when we do something we haven’t done for a long time, when we understand.
We really appreciate all you have done and can do for me. Including your efforts to inform and understand. The little things mean a lot to me and I need your help. Be gentle and patient. Remember that in this always weary body, I am always. I try to learn to live from day to day with my new limits and to keep hope for tomorrow. Help me laugh and see the wonders that God gives us.
