If you love a person with fibromyalgia, you experience intense pain that varies from day to day and from hour to hour. We can not predict that. 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 must learn to accept our body with its limits, and it is not easy. Fibromyalgia can not be cured, but we try to relieve the symptoms every day. We ask not to suffer.
Often we feel overwhelmed and can not bear more stress than we do. If possible, do not 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 does not necessarily mean that we do not have problems, we only treat that. Some people think that we can not be so bad if we are good. Pain is not It’s a chronic “invisible” disease and it’s not easy for us to have it.
Please understand, because we can not work and we are not lazy. Our fatigue and pain are unpredictable and that is why we have to adapt our way of life. Something that 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 does not mean we can not do it either.
Sometimes we are depressed. Who would not be depressed by a strong and constant pain? It has been found that fibromyalgia occurs at the same frequency as any other chronic pain condition. We are hurt to be depressed, but we are depressed by the pain and inability to do what we have used. We also feel bad in the absence of support or understanding from doctors, family and friends. Please understand, with your support and your help alleviate my pain.
While we sleep all night, we do not rest enough. People with fibromyalgia have a poor quality of sleep, which hurts the worst day pains.
For us, it is not easy to stay in the same position (even the seats) for a long time. This causes us a lot of problems and we need time to recover. Why not leave certain activities, we know that this factor would hurt us. Sometimes it is good to know the consequences that will entail.
We do not go crazy if we sometimes forget simple things, what we say, someone’s name or if we pronounce the wrong word. These are cognitive problems that are part of fibromyalgia, especially on days of severe pain. It’s something strange for you and me. But we laugh together and help maintain our sense of humor.
Most people with fibromyalgia are very familiar with this disease, some doctors and others, because we had to educate ourselves to understand our body. So, please, if you offer me a “cure”, do not do it. Not because I do not appreciate your help or not, but because I know and have tried many things.
We are very happy when we sleep in a day with little or no harm, when we do something we have not done for a long time, when we understand it.
We really appreciate everything you have done and can do for me. Including your efforts to inform and understand. Little things matter a lot to me and I need your help. Be kind and patient. Remember that in this body always tired, I am motionless. I try to learn to live from day to day with my new limits and to hope for tomorrow. Help me laugh and see the wonders that God gives us.