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 Help my 17 y/o Daughter - Is this a Fibro/CFS thing? 
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Post Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
My daughter is 17 and was diagnosed fibro over a year ago. We haven't been able to find a doctor to help us and so it's largely untreated. She is taking Gabipentin at night and Prozak for depression.

She hasn't been able to do much activity-wise. Yesterday, we went to Target and she got halfway through the store and had to sit down because she was weak, dizzy, felt nauseated and said her arms were hurting. She was very pale and clammy. This happens anytime she walks very far at all. She could barely make it out of the store. We've been to the ER for things like this with no significant issues found. She's basically been homebound for over a year with minimal ability to do anything outside. No on should be homebound, especially a 17 year old!

I feel completely helpless and have had no doctors offer any good advice. She recently saw a GI, had her gallbladder removed because it was overactive, and was diagnosed IBS and Lactose Intolerant.

Basically, she's in constant pain (hip, back, leg, jaw) is gaining weight, becomes extremely faint and pale when she does much activity, she even has to lay down for about 30 minutes after she showers.

Does this all sound fibro related, specifically the Target incident? What should I do to get this kid a life again?!


Mon Aug 18, 2014 1:14 pm
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Post Re: Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
Is there a children's rheumy in your area, I know they are hard to find. That is who diagnosed my daughter

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Thu Aug 21, 2014 2:47 pm
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Post Re: Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
Hi Robyn,
Yes, she was diagnosed by a Pediatric Rheumatologist who was fantastic but she left the practice. Then we saw another doctor in that practice, the only Pediatric Rheumatologist group in Austin, and he took her off the Gabipenton and would not try her on Cymbalta. He doesn't have any Ped Fibro experience at all. He was also kind of an ass and really upset my daughter about her weight issues. I refuse to subject her to that again so I called and asked if we could have an appointment with the other doctor in the group. They said it was their policy not to allow patients to switch doctors. I escalated up to the clinic manager and she was firm that it was policy that they cannot allow switching. Even if we only saw him one time. Even if he was an ass. Even if he didn't have any Fibro experience. SO, we're stuck until she turns 18 in February. I called again today to see if she could get in to see the other doctor, who has good reviews and has Fibro listed as one of the illnesses he treats (the other doctor does not.) It's been at least 8 months since we saw them, maybe even a year. Nope, still won't do it. They suggested I drive to San Antonio (1.5 hour drive) or Houston (3-4 hour drive.)

THIS IS A CHILDREN'S HOSPITAL, supposedly there to help children and they're sending me to San Antonio!? I'm so frustrated, I just want to cry.


Fri Aug 22, 2014 10:52 am
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Post Re: Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
I should add, her psychiatrist was really surprised he took her off the Gabapentin so she ended up prescribing it for her restless leg syndrome and for anxiety hoping it would also help her sleep and help with the pain.


Fri Aug 22, 2014 10:54 am
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Post Re: Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
What is the Guaifenesin Protocol?


Mon Aug 25, 2014 11:42 am
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Post Re: Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
Thanks, I'll look into it!


Mon Aug 25, 2014 2:08 pm
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Post Re: Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
I would recommend looking very thoroughly into it. I have heard some, like fibromom, who get miracle results. However, for some it makes things much worse. Only you and your daughter can decide what is best for her

I know it's hard watching your child suffer with this. My daughter has been ill since she was 4. :hug

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Wed Aug 27, 2014 6:11 pm
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Post Re: Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
I thought I'd share that I finally found a good fibro doc! I call every Rheumatologist on my insurance, that's about every Rheumy in Austin, and none of them would take a 17.5 year old. I finally gave up and called a doctor's office nearby and asked if anyone in their practice worked with people with Fibromyalgia. They did! So we went in and I literally cried from relief. None of the "it's because of her weight" or "are you sure it's not just anxiety?" and looks of disbelief when we listed the symptoms. No one looked at us as if we were drug seekers. (I swear, I think over half of the doctors we've seen think that.) Instead both the doctor and the nurse sympathized and got her on what appears to be an actual action plan. I'm hopeful for at least a small portion of her life back!


Fri Aug 29, 2014 2:28 pm
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Post Re: Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
I am so glad you found a doctor for her. Best of luck to you both

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Sat Aug 30, 2014 9:41 pm
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Post Re: Help my 17 y/o Daughter - Is this a Fibro/CFS thing?
Hello :wel

I'm sorry your daughter has had so many challenges. It's hard as an adult to wrap our head around it.
:luck

I would think a sleep study might give you more information to proceed further.

I can not support or advise on any medical interventions. I can sugguest that you try a search or check the sections available here at FT This is clarified under the rules section

We are here for support and feel free to ask questions or vent.

Welcome to our home

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Respectfully Gauchi


Sun Aug 31, 2014 8:30 am
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