Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
i have had this crap for so long now, i am getting tired of people.i have been seeing a rhuemy for 2 years who has diagnosed me with fibro, sjorgens, and the type of Ra that doesn't show up in my blood, i am taking humira, along with everything else that i take, but anyway, i have a sister in law, and her mother, that have been mad ever since i got on disability, they actually told me to my face that there was nothing wrong with me i just needed to get up off my lazy backside and go to work like the rest of the world,now my sis n law also has rhuematoid but she is not affected by it bad yet. anyways i seen her mother at my childs ballgame, she was asking me how i was doing, and so i tried to catch her up on my health situation, i told her that my rhuemy had diagnosed me as having RA, but i am so happy to know and wouldn't have known, if she hadn't told me that i don't have RA because my fingers are straight so there is no way i could have it, well my fingers aren't straight, they aren't real bad, but i just want to know how people that don't have a medical degree can tell me what i have a don't have, she went on to say that fibro was just what they told us when they don't know what is wrong with us, how long will we all have to put up with stupid, know it all people,that really don't know squat, and how long will it take me to learn to put them in their place. i got my disability, because of fibro,and anxiety, and the agoraphobia that i have, don't they know how hard most people have to get on disability, and that if the disability doctors i seen and all other doctors i see say i have something then i do, what will make these people learn to keep their mouths shut, anyone else of this.
I am sorry you had to go through that. The pain we have is trivialized by people. She didn't happen to inform you that there is a pill for that did she? That would have really set me off.
I know my mother had a hard time accepting there was anything wrong with me because she didn't want it to be true, there was nothing she could do to make it better, and she didn't want to see me suffer. So she just denied it existed. After 30 years I've finally convinced her that she doesn't owe me anything, and that all I've ever wanted from her was a hug. She's just now, the last 3-4 years, finally accepted that there might be something going on with me.
Just say " I'm fine" and go on. You will probably never change their mind, so save yourself the stress. If you're talking to someone who truly cares, you will know and can talk to that person.
Good luck and vent away to us!
Kind of like fightingfibro, I say oh, I'm great when ignorant people ask, or I just change the subject.
Last May, a very close friend, the kind of friend you consider family, who was in my life for close to a decade, I even called her my second "mom," hurt me increadibly, and we haven't spoken since. Two of my other friends, told me that she was saying very nice things about me, and asked them to tell me she knew I was angry with her, and that she loves me and cares about me deeply, and hoped I get well soon. I'm not angry with her, I was very hurt, I still get teary eyed when I think about what happened, but I'm done with her. I forgave, but won't forget and never will be able to have the kind of friendship with her like we had before. I still would help her if she asked or if I new she was in trouble, but I wouldn't be able to trust her ever again.
I have fibro, and some kind of systemic inflammatory disease, was dx'd with RA at 10 yrs old, and I was treated for it through high school. Negative RA factor, now, but my joints are awfully painful and swollen, my spine, and SI joints included.
Anyway, she told me in my last conversation, that I should be ashamed for always talking about my pain, always complaining. She said I should be ashamed because her sister who has RA and is in a wheelchair, never complains, just suffers quietly. Mind you, she always used to say how her sister complains constantly about her illness but doesn't do anything about it, so she deserves the pain. She also said "I have diabetes, but I never talk about it," which made me laugh because within the first five minutes from meeting her, she said, she had to go eat because she was diabetic and couldn't miss lunch.
Anyway, all the things she said, just felt like one of the horrible stabbing pains I get sometimes that make me jump and scream. She said I like going to the doctors, and everytime I go to the doctor I say I feel better, then, start all over again.
I always said I wouldn't wish this on my worst enemy, but like some of you, I would love to see all tthe people who accused us of faking, telling us we are fine, and probably just depressed or bored, and that getting a guiney pig was gonna fix all our problems, well, I would love to see those people, ignorant doctors, who shouldn't be doctors, have what we have for a few hours, maybe a day, and then, come back and tell us that we don't have anything, or that pain meds don't work on fibro, or that we just need to exercise and lose a few pounds, or get a hobby.
Sorry for this long reply, I haven't been posting much lately, and I guess, I just overdid it.
Take care.
In answer to your last question, "what will make them..." - sadly the answer is nothing. Nothing will stop these people from making their comments and having their thoughts. Insulting them doesn't work, arguing with them doesn't work, even ignoring them usually doesn't work. I used to have a MIL who would yell louder because I wouldn't fight with her because it pissed her off that she couldn't get to me. A lot of people are like that - even ignoring them doesn't work - just makes them more determined.
I wish I had something helpful to say - but this is one of those things that seems to be getting worse and have no end in sight.