Recently diagnosed with osteoporosis and I am terrified

Posted by drterri @drterri, 3 days ago

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 gravity3 @gravity3

@oopsiedaisy

That is great. What will be next for you after Evenity?

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@gravity3 I will have a conversation with my endocrinologist in April but her initial suggestion was Prolia. I told her I was uncomfortable with that so she suggested Reclast as another option. I’ve since learned that two shots of Prolia followed by Reclast are sometimes used after Evenity and I might be willing to do that.

I will not go on Prolia for the rest of my life at this point. I am 64 and anything could happen in terms of being able get Prolia regularly for the next 20 years.

Thank you for asking.

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Once you learn how to move and practice it will become natural. I had to modify my yoga practice and train myself not to bend forward with a rounded back. Now my movements are second nature. Check out Margaret Martin’s “Melio Guide” online. She is a physiotherapist who specializes in osteoporosis and teaches people exercises and how to move safely while building or maintaining bone mass. I’ll add a https://melioguide.com/

You aren’t alone and there are many good resources in this comment thread to help you get up to speed 0n how to care for yourself.

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Profile picture for denisejones00 @denisejones00

Get on your computer and research a product called AlgaeCal Calcium. You can reverse Osteoporosis!

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I don’t believe that is true. If you could reverse osteoporosis the manufacturer of AlgaeCalCalcium would be a billionaire ten time over. No doctor I know agrees with you.

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Profile picture for drterri @drterri

@barbyb50 Thank you so much for the encouragement! I really need to read things like this to keep me from feeling so alone and afraid.
Does your trainer specialize in working with people with osteoporosis?
I have been an avid runner for many years and have run several marathons, countless half marathons, 10s and 5k races. I have a shelf full of medals. Now I'm afraid to even walk 😀 It's confusing because some people say it's OK to continue running and others say it increases the risk of stress fractures, so walking is the exercise of choice. I've been walking and that's been going OK.
I live in a northern climate (Minnesota) and the thought of trying to navigate through life on snow- and ice-covered sidewalks is terrifying. It's going to be an extra long winter.
Thanks again! Your response was very helpful!

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@drterri
The trainer has experience with older people, and has been open to learning more!
Winter scares me too! We are in St. Louis, and have our share of ice and snow! It is terrifying!
Always glad to answer and share experiences!

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Profile picture for oopsiedaisy @oopsiedaisy

Please try not to go to that dark place. Many of us here have been dealing with this diagnosis for years and quite a few of us are living good lives even after experiencing an osteoporotic fracture. I am one of them - two years ago I had a vertebral compression fracture even though my T-score wasn't that bad. I went to the same place you did, convinced that I would now start fracturing regularly since I'd been on Fosamax for five years and even that wasn't enough to prevent me from fracturing.

I learned so much from the good people here and from other sources. I have not fractured since and am back to doing everything I used to do before the fracture. I walk, I run, I lift weights, I ride a bicycle, all without fear. I see a great endocrinologist now and have been on anabolic medication for over a year. I am on Evenity right now and will finish up a year of that in April.

I feel great and am no longer scared about what the future might hold. I know this can be scary but I take comfort in the fact that I am doing everything I can to prevent another fracture and that there are lots of people who go on to live a full life.

Wishing you the best and hoping that as you gain more knowledge about this condition you will regain your confidence.

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@oopsiedaisy this is so helpful; thank you so much!

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Profile picture for z3french9 @z3french9

Once you learn how to move and practice it will become natural. I had to modify my yoga practice and train myself not to bend forward with a rounded back. Now my movements are second nature. Check out Margaret Martin’s “Melio Guide” online. She is a physiotherapist who specializes in osteoporosis and teaches people exercises and how to move safely while building or maintaining bone mass. I’ll add a https://melioguide.com/

You aren’t alone and there are many good resources in this comment thread to help you get up to speed 0n how to care for yourself.

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@z3french9 thank you! I got on the mailing list for Melio Guide!

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Can you provide your DEXA score?

Check out New Chapter Bone Strength calcium supplements, which is sourced from algae but I have found it to be cheaper than AlgaeCal (on Amazon).

In addition, I use AlgaeCal Collagen powder with "Fortibone", which is supposed to help bones.

I am 75 and also have severe osteoporosis, worse in my spine. I am also fearful, but so far have not fractured. I am careful with my movements, to keep my spine straight and not twist. I can't take two of the bone building drugs (Forteo and Tymlos) due to parathyroid issues. That leaves Evenity and bisphosphonates. At this time, I have decided not to take either of these medications, due to side effects and absolute risk of bisphosphonates. (Evenity must be followed by a bisphosphonate.).

Go to Facebook and check out Brick House Bones for info on osteoporosis and exercises.

Good luck.

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I suggest finding a physical therapist who specializes in osteoporosis. They can give you exercises to strengthen your bones and ways to improve balance and prevent falls.

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Profile picture for gently @gently

drterri, it's just that drug sequencing for Evenity can put you on a path to Prolia. It is significant in agreeing to Evenity to you know the direction. While Evenity is amazing in the amount of bone it adds, it also comes back off in a year after treatment without a follow-up medication. If you have messaging service with your physician, you might ask so that you would understand their thinking. If it is to be Prolia, you'll want to know as much as you can about Prolia and as much as you can about Evenity, of course. You might want to look at the side effects and adverse events with Evenity. You might rather just trust your endocrinologist.

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@gently would reclast not also be an option?

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