Positive vibes ONLY thread

Posted by nannygoat5 @nannygoat5, 1 day ago

POV: I’m often left stressed and scared after reading this forum. It occurred to me that most of the people posting here have had bad experiences and wonder if people who have good experiences aren’t on a forum? I was listening to a podcast and the person casually threw out that she had OP and had a year of a certain medication NBD all good. She’s not a spokesperson for drugs and it was good to hear. If 75% of women have osteoporosis/penia surely there are good results out there? My PT, Dr and my endo were all like why are you so upset? You’ll be fine! But after I spend time here I’m faced with gloom and doom and feel awful. Hit me with your good stuff!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

My good news is that I have not fractured again since my vertebral compression fracture 16 months ago. The percentage of people who fracture within 12 months is 10 to 20% and 31% fracture again within 5 years.

I did a long stint of back rehab to strengthen my back muscles and am 98% pain-free now and getting stronger and feeling better every day.

I had really lost all hope when I was diagnosed with a compression fracture and envisioned a life of pain and fragility. I'm happy to say that I feel much more positive about the future.

I made many lifestyle changes including improving my diet as much as I could, adding a few more supplements, and educating myself from top to bottom on osteoporosis in menopausal women.

My foray into anabolics didn't work out but I am willing to wait and see and try them again in the future.

I realize there are a lot of negative stories here but I am grateful to those who share them because it gives me a complete picture of a range of experiences. I never assume I will face the same issues because my situation (as are all of ours) is unique.

A positive attitude is definitely helpful because stress is a factor in how we do with this disease.

Hoping to hear more positive stories. Good idea for a thread.

Edited to add: I view my fracture as positive because it drove me to really examine what was going on in my body. Prior to that, I completely ignored my situation and dismissed my osteoporosis as something I didn't need to consider.

REPLY

Looking for positive vibes only please

REPLY

nannygoat5,
I had my first dxa at 50 because my mom and her doctor made me. I knew then, 23 years ago, that I would have osteoporosis. All three of us had been watching the research and waiting for the FDA to approve Forteo. Shortly after my Dxa in 2002, Forteo was approved. It was wonderful for mom; she never had another fracture. She was able to continue after two years because her doctor already knew about the genetically-flawed Fischer rats. Two plus years ago with my dxa and the same physician warning me, I looked carefully at all the choices and easily chose Forteo. I even ventured away from this revered physician to be encouraged by younger fellows to use the new pharmaceuticals. I injected the first time without trepidation. And repeated those injections for two years without side effect. My first year dxa only revealed changes in fracture risk. The second year dxa moved my lowest lumbar score from -3,3 to -2.6. I'm into my third year of Forteo without experiencing a single side effect. I've had such luck; and incredibly wonderful mother, an excellent endocrinologist and a miracle drug.
Forteo was the first medication to address the osteoblast--increasing their number to build new bone. The osteoporosis medications before Forteo stopped the building of new bone by stopping the osteoclasts, and interrupting the normal process of bone building. (is this negative???) Thank goodness for those medications they've prevented a lot of fractures ( does that fix the negativity?}
Thanks to John Parsons pharmaceutical research scientist who simply would not give up on the idea of using pth to increase bone density. Cheers to all researchers everywhere.

REPLY
@nannygoat5

Looking for positive vibes only please

Jump to this post

nannygoat5, woe betide you if you avoid the generous warnings in those "negative" posts. They are all positive for health. I don't think Connect would be valuable without them.

REPLY
@nannygoat5

Looking for positive vibes only please

Jump to this post

Was that addressed to me? It’s hard to tell since you didn’t reply directly but this post is the only one after mine. I’m sorry if you didn’t find my post positive. I will bow out of the discussion. Cheers!

REPLY
@gently

nannygoat5, woe betide you if you avoid the generous warnings in those "negative" posts. They are all positive for health. I don't think Connect would be valuable without them.

Jump to this post

But I’d like positive thoughts. Plenty of negative on here!

REPLY

Nannygoat5 this is an open public forum and you cannot control who posts or what they say as long as the post fits with forum guidelines. Everyone has a different perspective of life and what it brings them and we should be pleased that they are willing to share with others. The more input we have the more choices we have to consider. This is not the place to have expectations that privacy or exact wishes potentially cannot be met. It’s just my opinion too.

REPLY
@julese

Nannygoat5 this is an open public forum and you cannot control who posts or what they say as long as the post fits with forum guidelines. Everyone has a different perspective of life and what it brings them and we should be pleased that they are willing to share with others. The more input we have the more choices we have to consider. This is not the place to have expectations that privacy or exact wishes potentially cannot be met. It’s just my opinion too.

Jump to this post

Well there are plenty of negative posts on here so that’s obviously available. I’d like to hear from people with good results and experiences. If there aren’t positive outcomes what is the point?Thanks!

REPLY
@gently

nannygoat5,
I had my first dxa at 50 because my mom and her doctor made me. I knew then, 23 years ago, that I would have osteoporosis. All three of us had been watching the research and waiting for the FDA to approve Forteo. Shortly after my Dxa in 2002, Forteo was approved. It was wonderful for mom; she never had another fracture. She was able to continue after two years because her doctor already knew about the genetically-flawed Fischer rats. Two plus years ago with my dxa and the same physician warning me, I looked carefully at all the choices and easily chose Forteo. I even ventured away from this revered physician to be encouraged by younger fellows to use the new pharmaceuticals. I injected the first time without trepidation. And repeated those injections for two years without side effect. My first year dxa only revealed changes in fracture risk. The second year dxa moved my lowest lumbar score from -3,3 to -2.6. I'm into my third year of Forteo without experiencing a single side effect. I've had such luck; and incredibly wonderful mother, an excellent endocrinologist and a miracle drug.
Forteo was the first medication to address the osteoblast--increasing their number to build new bone. The osteoporosis medications before Forteo stopped the building of new bone by stopping the osteoclasts, and interrupting the normal process of bone building. (is this negative???) Thank goodness for those medications they've prevented a lot of fractures ( does that fix the negativity?}
Thanks to John Parsons pharmaceutical research scientist who simply would not give up on the idea of using pth to increase bone density. Cheers to all researchers everywhere.

Jump to this post

Thanks for your inspirational story!

REPLY
@nannygoat5

Well there are plenty of negative posts on here so that’s obviously available. I’d like to hear from people with good results and experiences. If there aren’t positive outcomes what is the point?Thanks!

Jump to this post

So you don’t go down the same rabbit hole?
Saves a lot of time knowing what you don’t want so you can focus on what you do want to do. There are lots of positive outcomes posted here. Osteoporosis doesn’t have a lot of positive outcomes YET, because it was always thought to be and old person’s problem. Now they are really Doing research, but it takes time to know what works and what doesn’t. Look how cancer used to be a death sentence. My how that has changed. We will get there. Have heart.

REPLY
Please sign in or register to post a reply.