Wenn Sie jemanden mit Fibromyalgie lieben, treten starke Schmerzen auf, die von Tag zu Tag und von Stunde zu Stunde variieren. Das können wir nicht vorhersagen. Wir möchten, dass Sie verstehen, dass manchmal Dinge in letzter Minute abgesagt werden müssen und es uns genauso stört wie Sie.
We want you to know that we must learn to accept our body with its limits, and it is not easy. There is no cure for fibromyalgia, but we try to relieve the symptoms every day. We ask not to suffer from this.
Many times we feel overwhelmed and can not cope with more stress than we do. If possible, do not add more 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 we have no trouble, we just take care of it. Some people think that we can not be so bad if we are 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 not work and we are not vague. Our fatigue and pain are unpredictable and because of this we have to make adjustments in our lifestyle. Something that seems simple and easy to do is not for us and can cause us a lot of fatigue and pain. Not necessarily something we did yesterday, we can do 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 depression occurs with equal frequency in fibromyalgia as in any other condition of chronic pain. It gives us pain to be depressed, but we are depressed by the pain and inability to do what we have used. We also feel bad when there is no support and understanding from doctors, family and friends. Please, understand me, with your support and your help aminore my pain.
While we sleep all night, we do not rest enough. People with fibromyalgia have a poor quality of sleep, which makes the worst day pain that sleeps badly.
For us, it is not easy to stay in one position (although seats) for a long time. It causes us a lot of trouble and takes time to recover. Why not leave some activities we know this factor would hurt us. Sometimes we are fine that we know the consequences it will bring.
We do not go crazy if we sometimes forget simple things, what we say, someone’s name or say the wrong word. These are cognitive problems that are part of fibromyalgia especially in the 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 are very familiar with this condition, some doctors and others, because we have been forced 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 improve, but because I stay informed and have tried many things.
We are very happy when we have a day with little or no harm when we sleep, when we do something that we have not achieved in a long time, when we understand.
We really appreciate everything you have done and can do for me; Including your efforts to inform and understand. Little things mean a lot to me and I need you to help me. Be gentle and patient. Remember that in this body still tired, I am still. I try to learn to live from day to day with my new limits and to keep hope tomorrow. Help me laugh and see the wonderful things that God gives us.