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    Apparently it never gets better. You just learn to deal with it.

    I'm so sorry! Have hope. For us, it DID get better. It's not cured, but since that first diagnosis, it has gotten probably 80% better. To put it into metrics, from dropping out of jr. high, because an hour out of the house caused a flare that could disable my daughter for a week, we have...
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    feeling like a zombie and venting

    My teenage daughter was exactly where you are. You are saying so many of the same things. She got to where you are at, and she did decide to quit the medicine, and eventually, quit the doctor entirely. It was also impossible for her to move around and exercise. People who say that have...
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    Random Question

    I think reputation points represent how active you are in the community. I notice you have ten points, and you've made ten posts, so I suspect that's how you are getting them. Eventually, you'll probably be a "senior" member.
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    Heart

    Do you have your vitamin D, magnesium and calcium levels up? Getting low on those can contribute to heart palpitations. I have a friend who was having trouble, and started supplementing with magnesium and it cleared up.
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    Barred from exam

    I'm sorry that happened to you. My daughter's Homebound teacher said the same thing. I ended up taking her out of school and putting her in virtual school so that it didn't matter anymore what teachers or doctor's thought. It's a huge problem with this illness. I'm impressed that you could...
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    They know so little about us

    Imagine you are in McDonalds (because you are in McDonalds). They have maybe twenty food items. Their goal, when you come to the counter, is to determine which of the twenty food items to give you. Will it be an antibiotic? Steroids? Anxiolytic? Antidepressant? An opioid for pain (not...
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    Here we go again

    Keeping my fingers crossed for you!!! I think that, if you qualify for disability, there can be retroactive benefits. Also, I believe you can qualify for disability even when you qualify for SS. So, hang in there. There might be something worthwhile in this.
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    Don't know what to feel

    Strange and disturbing. Glad you didn't have any problems, but sounds like your instincts may be right on point. Sorry to hear you have to break in a new doctor.
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    pity party, temporary

    I"m so sorry. I wish I could help. My daughter has a funny story. She has days like that, and since she's a teenager, some of her friends like to roughhouse. So, she warns them on some days not to touch her. Her friend's boyfriend had been warned, one day, and he hit her playfully in...
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    FM/a blood test

    We haven't done that test. However, we did do the 23andMe genetic test, and ran reports for methylation and detox with the 23andme data through other sites like LiveWello, and got a lot of good tips of things to do from googling those results, particularly from discussions on Phoenix Rising...
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