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RE: Anybody out there with fibromyalgia? - 7/17/2010 10:14:21 AM
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cherish405
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quote:
ORIGINAL: pink..
You're probably right about overdoing it, Trish. I get so discouraged because I keep hearing from those who don't have fibro that I need to exercise more when I was already doing as much as I could. Then again, I have found that there are a lot of people who still don't believe that fibro exists and act like anyone who has it is just lazy. Not sure why they feel that way? If they had a disease that couldn't be seen, I wouldn't tell them that I thought they were lazy.
Unfortunately, that's so true. Over in the US, fibromyalgia seems to be known about more. Doctors over here are still squabbling about whether the condition actually exists! It took me so long to get diagnosed for that very reason. The rehabilitation physiologist figured it out easy enough, but finding a doctor to diagnose me and do something about it was another story!
I get all the time that if I did such and such that I wouldn't notice my pain. It is really hurtful to hear.
Roberta, 'well meaning' people at church have actually told me and Joan what I should be doing to get me healthier. They see that I am morbidly obese. I have been for the vast majority of my life. People just assume that it's because I just sit there and eat all day and night. One day, Joan told one of those people the health problems that I have that have led to my weight. (At that stage, I didn't have fibro), and they were horrified and very taken aback. Needless to say, they didn't make any more comments about me after that. Hopefully nobody else either.
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RE: Anybody out there with fibromyalgia? - 7/18/2010 10:23:07 AM
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cherish405
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I applied last year for one of those tickets that allows you to use disabled parking. The guy I was talking to was asking me all sorts of questions, and I told him how hard a time I'd had being diagnosed. I thought he was just getting information for the board. I found out he was actually a doctor. He told me that not all of the doctors on the board believed that fibromyalgia exists. In any case, it got turned down.
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Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 7/18/2010 11:26:52 AM
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cherish405
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That's totally unfair. She could have sued them over that.
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Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 7/18/2010 11:44:43 PM
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BugLady
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I once read an article in a woman's magazine written by a woman with fibromyalgia. Like many with fibromyalgia, before she developed the condition she'd led an active, vibrant lifestyle. The symptoms from the fibromyalgia forced her to stop working, so she was also forced to apply for disability to support herself. When she went to her doctor to obtain his signature on the necessary paperwork, he told her couldn't sign off on a diagnosis that amounted to laziness. I understand how humiliating it must have been for her to get to the point of not being able to work due to illness, and then have her own doctor call her lazy.
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RE: Anybody out there with fibromyalgia? - 7/19/2010 11:40:10 PM
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BugLady
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Many times you have choose one over another, and you have to ask yourself which is more incapacitating. It is indeed challenging.
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RE: Anybody out there with fibromyalgia? - 7/22/2010 10:14:21 AM
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cherish405
Posts: 8574
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I wonder if your doctor can prescribe something to help your migraines that WON'T give you the unwanted side effects. It would be a rough choice if you had to choose between which pain you would prefer.
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Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 7/22/2010 6:35:55 PM
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IwillseekHim
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That's what I am fearing, Trish. I don't want to have to choose. I think I actually forgot just how painful fibro. is. Mine had went away for fourteen months til now.
Thankfully, I've not had a migraine in seven days, either. That's rare. If/when I do, I will take the medicine again. If I hurt like I did with the flare up of arthritis and fibro, I will feel pretty certain that it is a side effect of the medication.
I don't want to say anything yet to the doctor. I fought for four months trying to get the medication through the clinic. She already wants to send me to a neurologist which I have no money for. I don't need a neurologist. Been to plenty of them. They want to put me on so much medication, I gain so much weight because of it and then I hurt more because of the excessive weight gain  .
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RE: Anybody out there with fibromyalgia? - 7/23/2010 10:31:36 AM
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cherish405
Posts: 8574
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((((((((((((((((MELISSA))))))))))))))))))))
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Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 7/23/2010 8:48:00 PM
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BugLady
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I'd like to ask you all a question.
Which has been a more common occurrence for you?
People asking you what it is like to live with fibromyalgia with questions asking you to describe the pain?
OR -
People advising what you should be doing to get well?
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RE: Anybody out there with fibromyalgia? - 7/23/2010 11:31:56 PM
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BugLady
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Does anyone even ever ask you what it's like to live with or to describe the pain?
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RE: Anybody out there with fibromyalgia? - 7/24/2010 11:09:26 AM
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Adrenalinejunkie
Posts: 621
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From: Tennessee -- America at it's best
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quote:
ORIGINAL: BugLady
I'd like to ask you all a question.
Which has been a more common occurrence for you?
People asking you what it is like to live with fibromyalgia with questions asking you to describe the pain?
OR -
People advising what you should be doing to get well?
The first one.
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RE: Anybody out there with fibromyalgia? - 7/24/2010 11:54:29 AM
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cherish405
Posts: 8574
Joined: 4/11/2005
From: The Land Down Under
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quote:
ORIGINAL: BugLady
I'd like to ask you all a question.
Which has been a more common occurrence for you?
People asking you what it is like to live with fibromyalgia with questions asking you to describe the pain?
OR -
People advising what you should be doing to get well?
I get a bit of both.
Some people have asked me what the pain is like and how I live with it. There's an article on FB called the spoon therapy. It really helps you to understand what it's like. Having to make choices about what to do, knowing that there will be consequences for your actions.
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Outside of a dog, a book is a man's best friend;
inside of a dog, it's too dark too read
~ Groucho Marx ~
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RE: Anybody out there with fibromyalgia? - 7/24/2010 12:34:49 PM
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BugLady
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So when people do ask you to describe the pain, how do you describe it?
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RE: Anybody out there with fibromyalgia? - 7/25/2010 1:05:02 PM
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BugLady
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Thanks for sharing pink... :)
I've always likened the pain to a giant toothache that travels throughout the body coming and going at will. Nearly everyone has had a bad toothache, so they can relate to what that type of pain feels like. I believe it is helpful to give people a picture of the pain in terms they can relate to. It's a bone deep nerve pain, sometimes feeling like a broken bone. And sometimes the pain can be so sharp and sudden that one's legs buckle beneath them, causing falls. But because the pain symptoms wax and wane, people are more likely to see the person with fibromyalgia on a good day and they figure they must be okay not realizing the consequences they might pay the next day. I believe this leads to a lot of misunderstanding about the level of disability the condition may cause. I also believe there is sort of a stigma associated with a diagnosis of fibromyalgia, which is a shame. People with fibromyalgia may suffer greatly with the added humiliation of sometimes being thought of as a hypochondriac.
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RE: Anybody out there with fibromyalgia? - 7/25/2010 9:23:41 PM
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Adrenalinejunkie
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From: Tennessee -- America at it's best
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quote:
ORIGINAL: BugLady
So when people do ask you to describe the pain, how do you describe it?
I usually tell them I don't know how to describe it (I'm HORRIBLE with words). Though, I do remember when the pain started in my hands and fingers I would tell people that it felt like having your fingers slammed in a car door or hit by a hammer, only without the pressure and burning.
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