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.

Profile picture for jenatsky @jenatsky

I hope you’ve done some research on osteoporosis to know what it is. It’s not as bad as you think it is. After all there are approximately 10 million people in the U.S. with an additional 44 million having low bone density. The vast majority of us are living life.

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@jenatsky thank you so much! This is very encouraging!

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Profile picture for nannygoat5 @nannygoat5

I, too, was in depression after my diagnosis exactly a year ago. I saw a personal trainer who scared the living cr*p out of me. She told me to not bend over, how to change the way I vacuumed…..! I talked to my MD, and my endo and they were, like, she’s nuts!

I have been drinking a lot of milk, avoiding spinach and almonds and foods with calcium blocking oxalates. I take algae cal vitamins, and I MOVE my body. I run, I walk, I am lifting more weights (I stayed with a DIFFERENT PT and learned correct techniques) I don’t do crunches and yoga forward falls and chest flies.

I stated taking fosamax 3 months ago. My Dr knew my upset so agreed to have a follow up DEXA after only a year. I improved! My arm is still bad (-3) but, frankly, I’m super skinny and small boned. Most importantly, my spine improved 5%! My hip is -2.4.

I will warn you that people mean well on this forum but they can be super gloom and doom (otherwise they wouldn’t be on a forum if their meds are great, etc). Don’t be discouraged by reading all that. I have had zero problems with fosamax except impatiently waiting thirty minutes for my coffee.

One year later and I don’t dwell on it it I was super sad a year ago. You’ll be fine! XO

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@nannygoat5 this is probably the most encouraging thing I've seen since I was diagnosed. Thank you!

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Profile picture for drterri @drterri

@nannygoat5 this is probably the most encouraging thing I've seen since I was diagnosed. Thank you!

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@drterri
I was 65 and I’m fit and active so I was shocked. My endo and my daughter in law who is an endo and my MD were all so encouraging. They all stated that most patients do very well.

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I can relate to this post. I am also 62 and just last week received my bone density test results saying I have osteoporosis. I have yet to meet with my GP to go over my test results. Does your GP typically refer you to a specialist? What questions should I be asking my doctor?

I was totally shocked with this diagnosis and also am getting in my head fearing the worst for my future years. I’d love hearing from others on what happens during your initial diagnosis and how you moved forward including any issues you had with meds and life style changes, which types of doctors you trust in your treatment. Thanks in advance

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Profile picture for lanig @lanig

I can relate to this post. I am also 62 and just last week received my bone density test results saying I have osteoporosis. I have yet to meet with my GP to go over my test results. Does your GP typically refer you to a specialist? What questions should I be asking my doctor?

I was totally shocked with this diagnosis and also am getting in my head fearing the worst for my future years. I’d love hearing from others on what happens during your initial diagnosis and how you moved forward including any issues you had with meds and life style changes, which types of doctors you trust in your treatment. Thanks in advance

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@lanig yes, my GP referred me to an endocrinologist, who got me scheduled for Evenity injections. I just went along with what she said because I didn't know what else to do. I have since learned that many people say you can build your bones back up with good diet and exercise, but I really don't think that's true in my case. I have had a good diet and been a regular exerciser for many, many years. If it didn't work for me up to this point, I don't think it's going to work for me now. Think if I am going to improve my bone density, it's going to have to be through medication.

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Profile picture for drterri @drterri

@lanig yes, my GP referred me to an endocrinologist, who got me scheduled for Evenity injections. I just went along with what she said because I didn't know what else to do. I have since learned that many people say you can build your bones back up with good diet and exercise, but I really don't think that's true in my case. I have had a good diet and been a regular exerciser for many, many years. If it didn't work for me up to this point, I don't think it's going to work for me now. Think if I am going to improve my bone density, it's going to have to be through medication.

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@drterri thanks for the info, my GP called me to schedule an appointment to discuss but I have asked them to refer me to an endocrinologist as I’ve had the right half of my thyroid removed (50% chance the small module I had there was cancer, it was not thankfully but my last blood work showed elevated TSH levels) figured it would be best to address both issues at the same time, so I’m hoping to get a referral.

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Profile picture for drterri @drterri

@lanig yes, my GP referred me to an endocrinologist, who got me scheduled for Evenity injections. I just went along with what she said because I didn't know what else to do. I have since learned that many people say you can build your bones back up with good diet and exercise, but I really don't think that's true in my case. I have had a good diet and been a regular exerciser for many, many years. If it didn't work for me up to this point, I don't think it's going to work for me now. Think if I am going to improve my bone density, it's going to have to be through medication.

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@drterri
Might want to compare what your 'good diet' and 'regular exercise' looks like when compared to a targeted diet and targeted physio often discussed in connection with osteoporosis. For me, it was surprisingly different. I learned to like prunes.

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Profile picture for lanig @lanig

I can relate to this post. I am also 62 and just last week received my bone density test results saying I have osteoporosis. I have yet to meet with my GP to go over my test results. Does your GP typically refer you to a specialist? What questions should I be asking my doctor?

I was totally shocked with this diagnosis and also am getting in my head fearing the worst for my future years. I’d love hearing from others on what happens during your initial diagnosis and how you moved forward including any issues you had with meds and life style changes, which types of doctors you trust in your treatment. Thanks in advance

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@lanig PCPs usually refer OP patients to endocrinologists… my PCP felt my case not too bad and that I could hold off on the strong meds,given other recent health issues…so I have an experienced OP-PT and do what walking and exercises that I can…take carefully researched supplements with calcium, D3, and K2– and adapted my diet moderately…each of us is different—some people have many problems/meds and others are quite active…one thing is important- be careful how you move to avoid fractures-maybe do less multitasking… balance training can be a big help !

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Profile picture for drterri @drterri

@sueinmn thank you so much for your helpful reply!
I am under the care of an endocrinologist and I will be starting Evenity in December.
I am also starting mental health counseling in a couple weeks, with a practitioner who specializes in the challenges of aging. I'm looking forward to that!

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@drterri Hi. I'm on here trying to learn from others since my diagnosis of osteoporosis last April. I've never heard of a mental health counselor who specializes in the challenges of aging. That's so wonderful to know people exist like that out there to help us navigate life as a senior. I'm not sure what year your post was, as they don't seem to be putting the year on it, but if it's in 2025, I wish you well! I hope she or he is very helpful to you. I'm on the young side of being a senior. This has been my first year of being 65, (new to Medicare), and will turn 66 in December. But since then, I've had one too many health surprises that relate to getting older in some way -- and it's been rough. I can totally see how a specialist in helping others cope with the challenges of aging would be extremely helpful! How is the Evenity working out? Any side effects? The counseling?

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Profile picture for lilac2025 @lilac2025

@drterri Hi. I'm on here trying to learn from others since my diagnosis of osteoporosis last April. I've never heard of a mental health counselor who specializes in the challenges of aging. That's so wonderful to know people exist like that out there to help us navigate life as a senior. I'm not sure what year your post was, as they don't seem to be putting the year on it, but if it's in 2025, I wish you well! I hope she or he is very helpful to you. I'm on the young side of being a senior. This has been my first year of being 65, (new to Medicare), and will turn 66 in December. But since then, I've had one too many health surprises that relate to getting older in some way -- and it's been rough. I can totally see how a specialist in helping others cope with the challenges of aging would be extremely helpful! How is the Evenity working out? Any side effects? The counseling?

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@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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