If you love someone with fibromyalgia, experience severe pain that varies from day to day and hour to hour. We cannot predict it. So we want you to understand that sometimes things need 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 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 it.
Many times we feel overwhelmed and cannot cope with more stress than we do. If possible, don’t add more stress to my body.
Although we can see well, we don’t feel good. We have learned to live with constant pain most of the time. When you see us happy, it doesn’t necessarily mean we have no problem, we just take care of it. Some people think we can’t be that bad if we’re good. Pain is not. It is a chronic “invisible” disease and it is not easy for us to have it.
Please understand, because we cannot work and we are not vague. Our fatigue and pain are unpredictable and for this reason we need 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. 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, constant pain? Depression has been found to occur with the same frequency in fibromyalgia as in any other chronic pain condition. It gives us the pain of being depressed, but we are depressed with 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 to ease my pain.
While we sleep through the night, we don’t get enough rest. People with fibromyalgia have poor quality of sleep, making the worst day a pain that sleeps poorly.
For us, it is not easy to stay in the same position for a long time (although the seats). This causes us a lot of problems and takes time to recover. Why not leave some activities, we know this factor would hurt us. Sometimes we are good that we know the consequences this will entail.
We don’t go crazy if we sometimes forget simple things, what to say, someone’s name, or if we say 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 are very familiar with this disease, some doctors and others, because we have been forced to educate ourselves to understand our body. So please, if you give me a “cure”, don’t. Not because I don’t appreciate your help or improvement, but because I stay informed and have tried a lot.
We are very happy when we go through a day with little or no harm when we sleep, when we do something that we haven’t accomplished for a long time, when we understand.
We really appreciate all that 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 still tired body, I still am. 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 wonderful things God gives us.