Well, haven't been here for a bit. It has been a very hard time for me, I am in constant pain and it doesn't seem to be letting up. I have been so nasty to everyone around me....they don't seem to get it after all these years of being around me and know what I am experiencing. I don't want to be like this but pain does something to you. My doctor wants me to go back to pain management and go back on the meds and I do not want that. They were not helping me so why go back on them. I took tramadol for years and neurotin. Now my knees have got worse and my hips... the pain has tripled. I am loosing the weight that the doctor wants me to do and I am trying to do more exercise... that is really hard when you can't move much or walk with out a walker but I am trying and the doctors keep pushing me to do more. They are confusing me more and making me feel like they don't really listen to me. I am so tired because I don't sleep and if I am not sleeping I don't wear my c-pap and there is another problem. Thank goodness you all are here... you all understand what it is like to be in chronic pain and, if I here my favorite saying " you don't look ill " how can they say that, I use a walker, I have put on weight, I go no where anymore, haven't they noticed the changes? I just need to get some sleep, I am so tired. Thank you all for letting me vent.... Fibro, IBS, Meniere's disease, osteoporosis in knees and hips and lower back and COPD are no picnic for anyone. I feel some better just letting it out. Going to try to go get some sleep. You all take care and bless you.
Good to see you.
And of course we understand. I always try very hard never to let my pain cause me to be short with another person, but at times it happens anyway. And then I hate myself for that, but really we should all give ourselves more of a break. I tell myself: I am trying so hard to be patient with people who don't understand at times, I should show the same patience with myself if I mess up and am short or impatient with someone now and then.
To me, catnel, it sounds as if you are doing what you can, and honestly no one can ask more of you than that. I encourage you not to go back on the meds, especially if they were not helping very much or at all. Why take strong and addictive medications that can cause you harm in other ways?
You say you are trying to do more exercise, and I applaud you for that. Honestly, I have found that to be the #1 best thing to do for fibro. It's very hard, but if you do what you can do on the days you can do it, that's something to be very proud of. If someone tells you that you should do more, I guess all you can say is that you are doing your best. Do your best every day. That way, you know that you are telling the truth when you tell that to people and you have firm ground to stand on. Don't let them knock you off that ground, or make you doubt yourself. You know if you are doing your best or not, no matter what they think or say.
They are saying "you don't look ill" because they don't want to believe it, and the reason they don't is that if they don't believe it then they don't have to know that it could happen to them. If I look at it that way it allows me to understand why they talk like that. Of course, that's no excuse for disbelieving you! I simply will not discuss fibro at all with anyone who is not willing to believe what I say. I just cut off the conversation. You might try that with your family members or others.
Your husband sounds great, and you are lucky to have him. Of course he feels helpless, and no one likes that, especially men! Maybe try to have compassion for his feeling helpless, as he has compassion for your pain. But I have found that if I go and do something with someone when I know I shouldn't, it doesn't turn out well, so it would help if he understood that you don't ever say no out of anything other than just trying to take care of yourself.
I don't think anyone who has not experienced this will or can ever understand what it is like.........how can they? So I have given up on trying to let anyone understand, and instead I simply ask people to believe what I say. That's enough. And if they won't believe me, I won't talk to them any more, or at least I won't talk about fibro any more.
Come here and vent any time. We understand, will hear you and offer our support, and maybe even a bit of advice that will help. I always try to offer advice, but I know that even though my intentions are always good, it is not always helpful.
Take care of yourself.