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Child with Fibro...
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An_200154 posted:
My 13 year old was recently diagnosed with Fibromyalgia. She has been to countless doctors for pain. When she was 7 years old she was diagnosed with OCD and has had many other infections and kidney stone surgeries 4 times. The joint pain started shortly after she had been in the hospital for a stomach virus. She woke up one morning with pain in her hands so bad that she couldn't write or pick up anything. Heat seemed to help some. Then she was hurting in her elbows. Some days she was hurting in her knees and still others and worse of all in her hips. The pain was not relieved with aleve or advil. She would just sometimes just cry because the pain was so bad. A lot of friends and family didn't believe her, because she does have some good days that the pain is very managable. I think thats the toughest part for her that some people don't believe her. The pain has made some of her OCD issues come back. Does anyone know any teenagers that have Fibromyalgia that might would email her?? Frustrated Mom..
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trgonzalez responded:
I don't know of any teenagers. I was 20 when I was diagnosed. I just wanted to give a show of support. It's not an easy condition since many believe that it doesn't exist. Best of luck on finding the others you are looking for.
 
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hlmjangel replied to trgonzalez's response:
that was my frustration, when i was young, dr's said, 'growing pains' or 'wanted attention' or 'period pain' no one, not even parents took my 'hell' seriously, i covered it up with drugs / alchole, anything that would stop the fybromyalgia nightmare. when i had my daughter, i chose to get help sober and straight, still years screaming out 'listen to me' then diagnosed ptsd, (i wittnessed my sisters horrible death), at 15, she was 16, when id bring that up, treated for ptsd, but!! fybromyalgia was first to hit / last to acknowledge, i hate it so much, i rarely have what i call 'good days' & iv tried everything i was told to and read, it got so bad i damaged my capilareries, because had heat beads so hot, eventually couldnt use anymore, the hurt from the heat was better than this chronic aching / lethargy / my 'mind' wanted to do what my body couldnt, i dont care how possitive one can be, with me im done!! im relying on new medication, first time since i was little, im being treated for what iv suffered / suffering, ''fybromyalgia'' still working on the ptsd, that will never leave me either, but this medication aimed! at fybromyalgia has given me ''hope'' 16 out of 18 tender points affected, hope is all i feel iv got left at my age, dont want to put people on a downer, just needed this desperatly to talk to other sufferers.
 
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THinMA responded:
Hi I am the mother of a 14 year old who was diagnosed four months ago with Fibromyalgia. It has been dibilitating for her. We are currently homeschooling because her condition has been so bad. She danced for 10 years and had to stop that also because of the Fibro. She also uses a cane to help her walk. She's a few different medicine's but they really don't seem to help. She is going to be seen in the Pain Clinic next month. We have not met any other teens with fibro although we do have a relative that has it but she is so much older than my daughter. We love to talk to other moms with teens that has Fibromyalgia.
 
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ZackKels replied to THinMA's response:
Its so good to finally get to talk to someone with the same experience. I also home school my daughter. I still get people that make comments about it, that its just in her head or that the doctors just say that because they don't know whats causing the pain. Does your daughter have trouble with TMJ also? My email address is lorikearney@wcps.org I would love to be able to talk to you some more and I know my daughter would love to be able to talk to your daughter.
 
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ZackKels replied to trgonzalez's response:
Thank you for your support and yes you are right it is not easy to find the support.
 
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marysxx responded:
So sorry.


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