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DEBDREAMS's Photo DEBDREAMS SparkPoints: (110)
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3/11/13 5:10 A

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Fran,
Thank you. emoticon
Deb

LONG35 Posts: 10,325
3/11/13 4:34 A

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Deb, I will check on the medi for you tomorrow. As long as she takes the medi, she remains in remission. Now and then she has a minor flare up - sore throat, achy, etc. She increases the dose for a short time, and all the symptoms go away again. She hates to take pills, so she will sometimes decide to try to wean herself off of it - next week she is symptomatic again. The doctor told her sometimes this disease goes into remission - they don't know what causes it, nor do they know what causes it to go into remission - so she keeps hoping.

I'm old, and I work, and I'm leaving town for 4 days this week (I'll have my computer with me). If I forget, remind me. It's 1:30AM here, not sure how good my memory will be in the AM.
Fran

DEBDREAMS's Photo DEBDREAMS SparkPoints: (110)
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3/11/13 4:24 A

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Fran, thank you for your answer. Sometimes, I can keep it in check; however, I just recently had a flare-up. I would like to what the medicine is that she takes.

I have been to a specialist, but insurance would not pay for all those visits and supplements. I had to turn in all the paperwork myself, which was a pain in the neck. It was so bad then, all I could do all day was sit or lie down. I felt like I had the flu all the time.

I imagine your daughter feels like she lives on a tightrope too. One goes from being dependable and active to never knowing what the next day will be like.

LONG35 Posts: 10,325
3/10/13 10:58 P

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Deb, my daughter has CFS. It is debilitating! Have you found a doctor who knows how to treat it? She hand half a dozen doctors give her half a dozen different answers, none of which worked. She finally went to a doctor at UCLA who has been studying CFS for 30 years. He put her on a very old medicine that they have almost stopped making several times, and it has her symptoms, for the most part, gone. I wrote down the name of the medi, but I can't find it. If you think it would be helpful I will ask her again.
Fran

DEBDREAMS's Photo DEBDREAMS SparkPoints: (110)
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3/6/13 4:03 P

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Hi. I am here, because I do not want to give up. I haven't been able to leave the house or even do anything, except minor things -- like washing a load of laundry for about a month and a half. I have Chronic Fatigue Syndrome, Fibromyalgia, and some other physical issues. Today, I thought where can I go to have people that actually talk to you and support you, as well as me giving back -- and I thought of Spark People. Right now, I am not even worried about my weight: my eating is under control, although I need to lose some weight. I am so tired of being the way I am. I don't know how much I can change, because of illness. That is why I put DebDreams. I dream of having my life under better control. emoticon emoticon emoticon

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