Understanding advice for dealing with osteoporosis and navigating info

Posted by galactica @galactica, Apr 23, 2023

I am looking at where I went wrong following the advice to exercise, eat well and take supplements. I did all of that - religiously for 9 months and I failed and in looking and how that could have happened I have been revising my actions and the advice I followed and what went wrong so I can correct it and hopefully help others. I am embarrassed to say that it was just not obvious to me.

I was told that walking is great for osteoporosis - so I did a lot of walking. Working up to 10k steps a day - But I am now learning that walking, just walking does not build bone density if it’s leisurely, even if for long duration. It has to be at a significant pace. And of course stair climbing and the elliptical but the heart rate has to rise to a particular level as well. Find out what that is for your body.

Weight bearing exercises - that is not enough. The exercises have to specially and safely address the spine and other bones and they have to be done properly or one loses the benefit of the exercise. I needed more of some exercises and fewer of the others and squats, for example, I was not doing them properly even though I had trainers watching me. My exercise physiologist helped me with proper form.

A wide variety of vegetables is recommended - but there are fruits, vegetables and nuts that are high in oxalates. If, like me, you have an issue with oxalates or are consistently eating a high oxalate diet - spinach, Swiss chard, rhubarb, almonds, prunes - like I was - day in and day out - oxalates bind to calcium and are excreted through urine.

I was eating copious amounts of rhubarb, Swiss chard, collards, sweet potatoes, almonds, almond flour in my crackers and foods. I thought I was eating calcium rich foods that were helping me but they were making me worse. Nobody told me this could be detrimental to my particular bone health.

I know look at not only calcium content but how high the oxalate content is. So I am actually absorbing the calcium intake in and it is going to my bones. It bears looking into this. My calcium oxalate level on the 24 hr urine test was 396. I brought it down to the normal level of 21 by changing my diet alone. No medication. However I had to be diligent and I am now navigating getting enough nutrients and calcium while regulating oxalates.

It’s not enough to “eat a lot of green leafy vegetables and have your plate look like a rainbow of colors”. Because many have high or moderately high oxalate content and either need to be boiled and the water drained in order to reduce the oxalate level, or avoided altogether depending on your situation. It’s important to read up on and understand how oxalates affect bone health and I had to figure this out the hard way because no one told me, not one doctor. Until it was a problem. With osteoporosis and bone health in general, I think this is a critical piece of information. I dont understand why this is not included in the general information.

The other part of the equation is our digestive system. I realized that if my digestive system was not absorbing nutrients properly, no matter how much or how nutrient dense my diet is, if my body is not absorbing and redirecting g these nutrients to the parts of my body that need it, the benefit is greatly reduced. The digestive system has to be healthy and able to absorb the nutrients you put into it. I thought just eating a pristine healthy diet would fix this but sometimes one needs a little more support in this area.

I wanted to mention this because for me, I realized that it was not enough to know what to do, and all I was told and all I read was what to do. I know now it has everything to do with how and to ask questions and when told I am making myself crazy (vs being given answers to my questions) to go elsewhere. I am learning to ask the how’s and the whys these things are happening and to research as much as I can instead of just following what I have been told to do, which is just not enough, at least for me and my body.

And I also believe that there is this assumption that everyone with osteoporosis is going to take medication so maybe it’s not important to know. And that the medication will just fix the bones. But it is important to know. So important, whether one takes meds or not, doctors and healthcare providers have to go a big step further to offer more than the status quo of walking, weight bearing exercise and eating leafy green vegetables, as do the sites that put out information on bone health.

This is what I am learning.

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

I think loss of estrogen is the most important factor and for me, no amount of dietary or supplement or exercise approaches made up for that. We are living a lot longer. Osteoporosis was not as common when people died much earlier.

If someone has osteopenia or very early osteoporosis, I do believe the more holistic approaches can do a lot of good, as can learning how to move safely, doing tai chi for balance, and so on.

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@windyshores

I think loss of estrogen is the most important factor and for me, no amount of dietary or supplement or exercise approaches made up for that. We are living a lot longer. Osteoporosis was not as common when people died much earlier.

If someone has osteopenia or very early osteoporosis, I do believe the more holistic approaches can do a lot of good, as can learning how to move safely, doing tai chi for balance, and so on.

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I do agree that loss of estrogen is critical.

I miss my estrogen so much 😭😭😭😭😭😭😭😭

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Well done! You are doing good work gathering all the knowledge you can. When I was first diagnosed, I did not do that and am on Prolia which is helping, but I may not be able to get off it now. Over the years I have tried to get more educated, and ask questions. I know I am doing better at exercise than diet, but working on both. It is good to keep learning for sure! I did not know about oxalates either so will now check on that as well. I have learned that I don't absorb nutrients as well as most people, so try to watch that and take supplements as necessary.
Thanks for sharing!

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Thank you thank you thank you! Finally - someone has addressed the WHOLE problem when it comes to eating and this disease. I had part of my colon and my gall bladder removed about 6 years ago. Since then I have also had problems with mal-absorption. I have found that patches applied daily have delivered results as far as keeping my Calcium and D3 at an acceptable level. 12 months of testing before Evenity injections showed a consistent level of Calcium so that solved my problem as far as G.I. issues. Right now I'm weighing the pros and cons of doing the Reclast infusion next month. I had an adverse reaction to Forteo in the past so I'm leery of anything that will stay in my symptom for 6 months. Thanks again for bringing up this component of Osteo care.

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To your point - if it’s not being discussed or mentioned here - I question whether women are getting all of the information they need or if physicians assume because meds are the only way that nothing more needs to be said or done.

I am by no means saying its done with malice. I think that we as women unfortunately need to work harder, dig deeper to understand our situations and not be afraid to ask questions. And there is also the issue of even being aware of what questions to ask. And, I’m some cases, not backing down if our concerns are being dismissed. It helps us know how to better navigate this journey and know what to expect and how to manage the unexpected or at least prepare for it, of course going in with the best possible attitude and outlook.

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@galactica

Thank you for your share.

In addition to all of the experiences that make up our individual bodies: oxalates, overactive parathyroid, cancer, stress, etc.

What I am realizing for me is that a healthy, optimally functioning digestive system is very important. I don't believe I am getting nutrients from even the healthiest foods, calcium and mineral supplements to my bones and the rest of my body and brain, if my digestive system is not working properly to break down, absorb and effectively release these elements into the body.

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"optimally functioning digestive system is very important" could be a direct response from my sister who was a Registered Dietician for 30+ years (Michigan State and internship at Mass General). Because of her I'm on Tymlos as her advice was that anything that would disrupt or hurt the digestive system would prevent healing.
It is now on the record that there two of us with osteoporosis who believe that the digestive system is important!

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@sarahstuart

"optimally functioning digestive system is very important" could be a direct response from my sister who was a Registered Dietician for 30+ years (Michigan State and internship at Mass General). Because of her I'm on Tymlos as her advice was that anything that would disrupt or hurt the digestive system would prevent healing.
It is now on the record that there two of us with osteoporosis who believe that the digestive system is important!

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Make that three of us!

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@sarahstuart

"optimally functioning digestive system is very important" could be a direct response from my sister who was a Registered Dietician for 30+ years (Michigan State and internship at Mass General). Because of her I'm on Tymlos as her advice was that anything that would disrupt or hurt the digestive system would prevent healing.
It is now on the record that there two of us with osteoporosis who believe that the digestive system is important!

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Me too!!! I have had digestive issues for years that keep getting worse. Tried everything I can find and still have issues Such a shame because I know his important good gut health is.

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@galactica

To your point - if it’s not being discussed or mentioned here - I question whether women are getting all of the information they need or if physicians assume because meds are the only way that nothing more needs to be said or done.

I am by no means saying its done with malice. I think that we as women unfortunately need to work harder, dig deeper to understand our situations and not be afraid to ask questions. And there is also the issue of even being aware of what questions to ask. And, I’m some cases, not backing down if our concerns are being dismissed. It helps us know how to better navigate this journey and know what to expect and how to manage the unexpected or at least prepare for it, of course going in with the best possible attitude and outlook.

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Absolutely agree!

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@candy209

Me too!!! I have had digestive issues for years that keep getting worse. Tried everything I can find and still have issues Such a shame because I know his important good gut health is.

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I am learning that the more I read the more information I have and I am able to start connecting the dots.

Tenacity is serving me and I have a better sense of where I’m going with all of this.

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