Two of my children really frustrate me. One thinks that more exercise is the answer to everything. That If I would get up and exercise then I would feel better, even though it makes me feel worse. The other told me he is tired of there always being something wrong with me. Well I can't help that. So what do you tell them. The story is the same and doesn't change to much from day to day. Sue.
That is awful that they don't understand. I have people at work tell me things too and I just want to say: No I will not get better, yes some days I will be worse, would you like me to somehow look more sick for you so you can allow the fact that I am i pain constantly even though I don't say Ouch or something to that affect.
I am really frustrated about the exercise thing as well although my doctor is the one saying if I just exercised I would feel better. Well I exercise and I feel horrible for at least 3 days after. I would love for someone to show me the statistics that exercise helps fibro.
I really hope they come around but sometimes people are too stubborn to stop and think, Why would you want to act like something is constantly wrong with you especially when you know they will criticize you for acting that way. It is just crazy to me that people act this way. We are not doing this for attention and we would LOVE to feel normal.
We all know how you feel and there isn't much we can do but manage the pain (without exercise in my opinion). Hopefully one day they will come around...
Gentle Hugs,
Desiree
Hi Sue and welcome! It's nice to see you here and thank you for joining us. I hope that coming here will help you out in feeling more accepted and heard. Almost all of us go through the same thing as you do. You wonder HOW people who are so close to you could not understand the simple concept that you are sick and in pain. It's not rocket science, is it? But this illness is so frustrating because we (allegedly) look the same as before. Only we're not.
I would encourage you to print out some of the conversations here and give them to your children so they can see how devastating fibro is to other people. Sometimes people can grasp it easier when it's someone other than a loved one who is suffering.
Another thought is to print out some research on fibro and give it to them. I know that something about fibro being related to reduced blood flow in certain parts of the brain that regulate pain and how we respond to pain was just talked about on here, and it included a picture of normal brains vs. ours, showing quite a bit of difference between the two. If I can find it, I'll tell you which thread it was so you can go right to it.
Can you have your doctor speak to your children? Perhaps the words of an expert would also influence them.
And finally, I'd maybe say something to them along the lines of, "you trust what I say on xyz. You trust me when I say this and do that. So why do you not trust me when I tell you objectively that this illness causes widespread pain and fatigue? Every single medical site about fibro will say the same thing. So why not accept my word on this?"
I do wish you the best. It's got to be hard dealing with two kids who don't believe you on the fibro issue. It hardly seems fair to have to deal with fibro AND people who won't believe us. Hopefully soon the medical field will better define fibro and its causes and give us more ways to prove its existence and pain. Until then, we can rely upon each other.
Here's the thread that talks about a brain scan that proves fibro's existence and shows that the blood supply to the emotional response to pain and the area for pain has been reduced. (Special Brain Scan Can Now Prove Fibro!) I've bumped it to the top of the page.
Gentle hugs to you,
Petunia
I think that people don't know how to believe us when there is not yet a viable blood test or diagnostic test for Fibromyalgia. If we had this or something close to it, it would give an accepted and known credibility to the disorder. It's the sad, cruel reality of Fibromyalgia at this moment in time.