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Old 06-17-2007, 01:39 AM   #1
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Osteoporosis/osteopenia and Osteogenesis Imperfecta

Ok I’m a little nervous about this so bare with me for it is my first time using a message board like this. I have Osteopenia and Osteogenesis Imperfecta (O.I). I’m 21 and I think I just need someone to talk to about it, someone I could relate too. I have questions and concerns and no one to really talk to.
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Old 06-17-2007, 09:50 AM   #2
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Re: Osteoporosis/osteopenia and Osteogenesis Imperfecta

Hi Jess- Welcome! No need to be nervous , you have come to a very good place. The people here are helpful, and kind. I don't know about Osteogenisis Imperfecta. I do know about osteoporosis which I have, and it is a more advanced stage of osteopenia. Perhaps there are others on this board who have knowledge of OI. If so, you will be hearing from them soon. Until then, maybe you could tell us more about your situation.

 
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Old 06-17-2007, 04:22 PM   #3
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Re: Osteoporosis/osteopenia and Osteogenesis Imperfecta

Hi Osteoblast

Thank you for welcoming me. O.I is a genetic disease in which I got from my father. He has O.I along with his brother and mother. Out of all his children I am the only one with this disease. I was also diagnosed with Osteopenia earlier this year. Iím in pain everyday from my ankles to my back and everything in-between. Iím also loosing my hearing which is part of O.I. these things scare me but I cant tell my friends and family that because they will be even more scared for me than they already are. I have only met my dad once about 4 years ago. When I have questions about new pains and concerns I try to get a hold of him but itís hard to do that so Iím kind of counting him out of the picture. I take bayer back and body when my pains get bad which is most days. I try exercising and eating right but sometimes I feel like exercising hurts me more. Can anyone recommend something that would be good and less stressful on my body? I was thinking of yoga or tai chi.

 
Old 06-17-2007, 05:03 PM   #4
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Re: Osteoporosis/osteopenia and Osteogenesis Imperfecta

Hi Jess~~ Welcome... Just about everyone here has either osteopenia or porosis, do you have any specific questions, that we could help with?

I'm afraid I don't much about OI either, do you have a Dr that is treating you for both problems? Have you tried any other type of med for your pain like the anti imflammatory type (celebrex, motrin, advil)? Some people find that these can help. What does your Dr say, do they have any ideas for controlling the pain?

Usually osteopenia/porosis doesn't cause pain until you have a fracture so I'm guessing the pain is from the OI?

Do you have your t-score results? If so could you post those, that way we would have a better idea where your at on bone density.

Exercise is essential for osteopenia, but with your OI, I'm not sure if you have physical limitations or not. If not, walking is a good weight bearing exercise, and if you are able you could add weights to that. If you are interested in yoga/tai chi, that's good too.
Below is a good link on osteoporosis, and hopefully it can answer most of your questions.

[url]http://courses.washington.edu/bonephys/index.html[/url]

I think there is a section on OI in the above link, so maybe that will help some. Have you tried you local library or the Internet for more info on it? Check out the section on vitamins, in the link, it will explain what you should take for your bones.


If you have any more questions don't hestitate to ask, someone is usually around.

 
Old 06-17-2007, 07:03 PM   #5
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Re: Osteoporosis/osteopenia and Osteogenesis Imperfecta

Jess: Sorry to hear about your problems having someone to talk to about your OI . We can help with being a support group online. It sure would be great if you could find a support group through your doctor or local hospital.

My osteoporosis presents me with certain physical limitations, and I can't do the yoga anymore that I used to enjoy so much. I have been advised not to bend forward/backward or twist my spine. As you can see then yoga is out. But I have found a tai chi dvd. put out by Scott Coles that is perfect for me. I will be able to tell you more about it tomorrow but I wanted to let you know about this. You can go to Amazon and read about the dvd. I love it.Not only is it great for my body but it is very beautiful and very soothing music. I read at amazon that someone said Scott Coles was a hunk-that's not a draw for me , but for some it may be. Let's say he has an athletic build.Part of the cd is filmed at the beach- so it feels like a get away.

I think you'll be glad that you found this place. Take care.

 
Old 06-18-2007, 10:59 AM   #6
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Re: Osteoporosis/osteopenia and Osteogenesis Imperfecta

Hi Jess: Here's a link on OI that might help...

[url]http://www.niams.nih.gov/bone/oi.htm[/url]

 
Old 06-19-2007, 10:19 AM   #7
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Re: Osteoporosis/osteopenia and Osteogenesis Imperfecta

thank you guys so much for the information you left for me. i have a problem, i just moved from california to colorado. my doctors are in california. i have not yet been able to begin seeing doctors here in colorado springs. i just started working 3 months ago so in another 3 months i will be able to get their benefits which will be great for me. at this time i do not have my t-score. i'm hoping to get all my up to date information when i start seeing new doctors. it's nice to know that my pains are more than likely from O.I and not Osteopenia which i was worried about. I will look into the DvD for tai chi. i think i will enjoy it. i also am looking into the web sites posted. i again thank you guys for your concerns.

 
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