Recently diagnosed with osteoporosis and I am terrified

Posted by drterri @drterri, Nov 3 9:03am

Hi, I was diagnosed with severe osteoporosis in my spine and hips about a month ago and I am now living in fear. I feel like I'm made of glass and I'm afraid to move. I walk around stiffly, afraid to bend, afraid to twist, stepping carefully to avoid falling, scared to drive or ride in a car in case I get in an accident. Note that I am actually doing everything I need to do (taking care of myself and my house, working full time, going out with friends) but I am doing it all in a constant state of anxiety. Every so often I go down a very dark path, mentally, and decide it would be better to just end it before it gets worse. I have been able to talk myself out of it every time, thankfully, by thinking about how sad my family would be without me. Will I be able to get past this and live my life without fear again? I'm 62 and figure I have another 20+ years on this earth. I have been looking forward to spending my final years peacefully, enjoying life but at this rate, that isn't going to happen. Any positive stories or encouragement would be much appreciated!

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

They are putting dates on posts but not on recent ones. Looking back through this thread, the dates jump from Nov 9th to 4 days ago.

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Profile picture for drterri @drterri

@lilac2025 I just posted this a couple weeks ago! That's too bad they aren't putting the dates on these. I had my first appointment with the therapist and it went well! This particular therapist does Zoom appointments, so theoretically you could see her if you wanted to! And yes, it just seems like it's one thing after another. Besides the osteoporosis, I also have neuropathy issues in my left leg and foot and I also had a tooth removed and a bone graft put in place! This happened before I was diagnosed with osteoporosis. I have heard that osteoporosis meds can badly interfere with bone grafts, so now I'm going to have to figure out what to do about that! I have not started the medication yet.

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@drterri OP meds can also affect the jawbone and therefore the teeth….people focus on just the bone density, but many people with OP have numerous other issues and take many meds, so that is important to take into account…also, sometimes more meds are needed to deal with side effects from the OP meds…it’s complicated and takes patient research so we can advocate for ourselves as we work with our doctors.

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I totally empathize, but I’m here to tell you, it gets better! I was scared, too, when I found out. I was more careful about everything. How I bent, how I moved — it’s all part of the shock before you ultimately adjust and adapt. Knowledge is empowering! I bought books on the subject, (at least 2-3) listened to experts I located on YouTube, such as Margie Bissinger, Sarah Mapes, Brick House Bones (Lisa Moore, physical therapist) - and there are so many others, such as Dr. Lucas. I went to a physical therapist to make sure my form at the gym was right. I was nervous about my workout at the gym!!! I’m over that now. Physical therapy gave me the confidence I needed. I recommend it! It truly does get better in how you feel and move in the world. And, my osteoporosis is NOT mild - but I’m not letting it take over my life & my mind. Strengthen those muscles which support the bones and help strengthen them. It’s all about not falling, so adding balance exercises will help. How are you doing now??? I was very upset when I found out. I felt very alone, too, because finding an expert in the healthcare system at least where I am, is like finding that “needle in a haystack”. My primary doctor (who is great), didn’t even know how to interpret the bone marker blood test, which I had to research and ask for on my own. That’s why I turned to Mayo Clinic for support because it’s easy to feel alone as you go through the maze of trying to get support and figure out how to help yourself. I’m glad you found this website, too! I hope you are feeling much better and not as scared now? Personally, I’m going a more natural route for the time being through diet & exercise with the support of my primary doctor for the next two years before I get another DEXA, but it’s a very individual decision on how to move ahead. I wish you well. Deep breaths. You’ll be okay! Hugs!

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The best thing you can do is move and excersize. Walking, bike, light weights. The more you move the better. The more stress you give yourself the worst. I have been living with rheumatoid arthritis, osteo, osteoporosis, lung disease for 38 years and im 70. I e had multiple surgeries and take drugs for the rheumatoid. You need to stay positive. I go to the gym at least 3 days a week, I recently retired at 68 and I have a positive attitude. Don't be afraid, be pro active and do anything for your body that will help you feel better. I try everything.
Hope this helps.

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Profile picture for momamia @momamia

The best thing you can do is move and excersize. Walking, bike, light weights. The more you move the better. The more stress you give yourself the worst. I have been living with rheumatoid arthritis, osteo, osteoporosis, lung disease for 38 years and im 70. I e had multiple surgeries and take drugs for the rheumatoid. You need to stay positive. I go to the gym at least 3 days a week, I recently retired at 68 and I have a positive attitude. Don't be afraid, be pro active and do anything for your body that will help you feel better. I try everything.
Hope this helps.

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@momamia WOW, thank you for the wonderful encouragement! In the few weeks since I wrote the original post, I've started feeling a lot better, mostly thanks to hearing from people like you who are living their best lives in spite of medical challenges!

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Profile picture for lilac2025 @lilac2025

I totally empathize, but I’m here to tell you, it gets better! I was scared, too, when I found out. I was more careful about everything. How I bent, how I moved — it’s all part of the shock before you ultimately adjust and adapt. Knowledge is empowering! I bought books on the subject, (at least 2-3) listened to experts I located on YouTube, such as Margie Bissinger, Sarah Mapes, Brick House Bones (Lisa Moore, physical therapist) - and there are so many others, such as Dr. Lucas. I went to a physical therapist to make sure my form at the gym was right. I was nervous about my workout at the gym!!! I’m over that now. Physical therapy gave me the confidence I needed. I recommend it! It truly does get better in how you feel and move in the world. And, my osteoporosis is NOT mild - but I’m not letting it take over my life & my mind. Strengthen those muscles which support the bones and help strengthen them. It’s all about not falling, so adding balance exercises will help. How are you doing now??? I was very upset when I found out. I felt very alone, too, because finding an expert in the healthcare system at least where I am, is like finding that “needle in a haystack”. My primary doctor (who is great), didn’t even know how to interpret the bone marker blood test, which I had to research and ask for on my own. That’s why I turned to Mayo Clinic for support because it’s easy to feel alone as you go through the maze of trying to get support and figure out how to help yourself. I’m glad you found this website, too! I hope you are feeling much better and not as scared now? Personally, I’m going a more natural route for the time being through diet & exercise with the support of my primary doctor for the next two years before I get another DEXA, but it’s a very individual decision on how to move ahead. I wish you well. Deep breaths. You’ll be okay! Hugs!

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@lilac2025 Oh my goodness; your comments are so helpful and encouraging! I am feeling a lot better since I wrote the original post, thanks to reading comments about what other people have done and how they're living a good life despite their diagnosis. I joined the group with Dr. Lisa and it's been fantastic. I started seeing a great physical therapist and she's convinced me that I can move without being afraid. I started seeing a mental health counselor who specializes in the challenges of aging. One thing I'm really lacking though, is knowledge about the various medicines, treatments, etc. I am scared to look into the details because I know I'll freak out over the side effects (I have generalized anxiety disorder and tend to be kind of a hypochondriac - if I hear about a side effect, I will experience it just because my brain tells me to - that's something else I'm working on). I don't even know my DEXA score because I'm afraid to know. Confronting those issues will come with time, I think!

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I understand 100 percent how you are feeling. I have been putting off the drugs for a few years and just keep researching and continue with exercise, balance work, weights, etc, so important!! I was a Physical Therapist Assistant for years and know how important this is for our bones but still I have Osteoporosis(frustrating). Hang in there and continue to enjoy your life and find the right balance of what you need. I continue to seek out specialists and listen to podcasts from the experts.

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Profile picture for lilac2025 @lilac2025

I totally empathize, but I’m here to tell you, it gets better! I was scared, too, when I found out. I was more careful about everything. How I bent, how I moved — it’s all part of the shock before you ultimately adjust and adapt. Knowledge is empowering! I bought books on the subject, (at least 2-3) listened to experts I located on YouTube, such as Margie Bissinger, Sarah Mapes, Brick House Bones (Lisa Moore, physical therapist) - and there are so many others, such as Dr. Lucas. I went to a physical therapist to make sure my form at the gym was right. I was nervous about my workout at the gym!!! I’m over that now. Physical therapy gave me the confidence I needed. I recommend it! It truly does get better in how you feel and move in the world. And, my osteoporosis is NOT mild - but I’m not letting it take over my life & my mind. Strengthen those muscles which support the bones and help strengthen them. It’s all about not falling, so adding balance exercises will help. How are you doing now??? I was very upset when I found out. I felt very alone, too, because finding an expert in the healthcare system at least where I am, is like finding that “needle in a haystack”. My primary doctor (who is great), didn’t even know how to interpret the bone marker blood test, which I had to research and ask for on my own. That’s why I turned to Mayo Clinic for support because it’s easy to feel alone as you go through the maze of trying to get support and figure out how to help yourself. I’m glad you found this website, too! I hope you are feeling much better and not as scared now? Personally, I’m going a more natural route for the time being through diet & exercise with the support of my primary doctor for the next two years before I get another DEXA, but it’s a very individual decision on how to move ahead. I wish you well. Deep breaths. You’ll be okay! Hugs!

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@lilac2025 hi, thanks so much ! I love your post, as I am taking a similar path…I must say that getting a cancer diagnosis a year ago, followed by an osteoporosis diagnosis a few months ago, has been a lot to process…and my PCP really didn’t want me adding those strong meds at this time…if I could keep cancer at bay, I think I can summon the grit again to do my part to deal with OP, which requires a more proactive response from patients than many other conditions…upward and onward…wishing you all the best !

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Profile picture for drterri @drterri

@lilac2025 Oh my goodness; your comments are so helpful and encouraging! I am feeling a lot better since I wrote the original post, thanks to reading comments about what other people have done and how they're living a good life despite their diagnosis. I joined the group with Dr. Lisa and it's been fantastic. I started seeing a great physical therapist and she's convinced me that I can move without being afraid. I started seeing a mental health counselor who specializes in the challenges of aging. One thing I'm really lacking though, is knowledge about the various medicines, treatments, etc. I am scared to look into the details because I know I'll freak out over the side effects (I have generalized anxiety disorder and tend to be kind of a hypochondriac - if I hear about a side effect, I will experience it just because my brain tells me to - that's something else I'm working on). I don't even know my DEXA score because I'm afraid to know. Confronting those issues will come with time, I think!

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@drterri -You mention "fantastic Dr. Lisa group." How can I check out/join Dr. Lisa group?

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Profile picture for tonilynn @tonilynn

@drterri -You mention "fantastic Dr. Lisa group." How can I check out/join Dr. Lisa group?

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@tonilynn Dr. Lisa Moore, DPT - Osteoporosis Physical Therapist https://share.google/hu8LvRrud1I4tvwXS

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