What has been the most frustrating about being diagnosed with osteoporosis?

A common frustration we've heard is not being able to do the same workouts as before or having to modify yoga poses.

What have you found most frustrating since being diagnosed?

Share your experiences and interact in the comments below!

[christy81256]

I do yoga every day. My osteoporosis is pretty bad I do all yoga poses. So far no problems. It helps me improve my balance.

[MClem in reply to christy81256]

Hi Christy,

It sounds like you are doing a fantastic job working on your yoga poses and your inner chakras! I think it is wonderful when people like you do not let osteoporosis deter you from doing things that enrich, not only your bones but also your life and your overall health and well being. Have you seen the list of helpful articles on Yoga found on our website? If not, you don't have to navigate through our website to search for them, here is a link - americanbonehealth.org/?s=yoga

Namaste,

Martha

[christy81256 in reply to MClem]

Thank you for the website references. I used to be obsessed with my osteoporosis but decided I can’t let it rule my life anymore. I just st try to be careful and like my doc said just do no fall. I don’t snow ski or ride horses r those types of things which could be high risk f taking a tumble but I won’t second think every single move I make. Stupid maybe on my part. I no longer work so I enjoy yoga and Pilates better than hugging my couch all day. I have no aches and pains except when I lift weights too much. I think yoga has helped me and Pilates are helping my weak core. Just live life the best way I can. Thanks again I enjoy reading all the posts and personal responses!

[MClem in reply to christy81256]

Likewise. We love reading compelling stories like yours!

[walkmax in reply to christy81256]

Interesting. I was just diagnosed and was thinking about doing Yoga, but I've read you really have to be careful and adapt the program. No toe touching, or twisting, and keep your back straight. I'm getting confused and frustrated and am not sure what exercise plan to follow.

[kate93105]

Good morning EmelyWendell,

I am so happy to have found this group. The middle of last year I suffered a compression fracture of my T7 vertebrae. It was one of the most painful things I have ever experienced. Shortly after I visited the office of my surgeon. A few days later I went in for a kyphoplasty. Simply put, the surgeon "glued" my vertebrae together with a surgical cement. A few days later I started feeling much better.

About a week after the kyphoplasty, I fractured another vertebrae. Go figure!! More painful than the first. I had another kyphoplasty on T8.

Now I am lying here waiting for my surgeon to return from vacation so I can have my 3rd kyphoplasty. I am beyond tears and in great pain again. I found out I have severe osteoporosis and am taking medication each week to strengthen my bones.

I am a cancer patient and the chemotherapy and radiation treatments I underwent made my bones look like Swiss cheese. I am still being treated for lung cancer but have been switched to immunotherapy - keytruda.

Sorry this is so long. Thank you all for providing this platform. Take care and have a wonderful day.

Kathie

[MClem in reply to kate93105]

Dear Kathie,

I am really sorry to hear about your spine. It is sad to hear such devastating news, but I am glad that we are able to provide a platform for you while you are, believe me as I say this, doing such an awesome job handling the treatments you underwent and the surgery that you are about to go through! We truly hope that all goes well with the procedure. We hope that you continue to keep that strong, admirable quality of having the self-efficacy to believe that you have the ability to cope. We want to be there for you and support you along the process, so please do not hesitate to call our hotline number - [phone] to speak to one of ABH's wonderful Bone Health Specialists, Shelley Powers!

Moving forward, I highly suggest that you read this insightful article about tertiary prevention - americanbonehealth.org/blog...

I think the article may provide you valuable information for post-op.

I wish you all the best!

Sincerely,

Martha

[christy81256]

Hi another frustrating think about osteoporosis is not knowing if all the drugs out there is the best way to go. Like Boniva, actonel etc. or do f it is better just to do Calcium, D3 and wight bearing excercises. Some articles say natural approach is best and the prescription drugs out there just make bones more brittle. Who to believe the doctors, the drug companies.....?

[MClem in reply to christy81256]

Hi Christy,

It is great to hear back from you again!

To address your concerns on choosing the right treatment, I highly suggest you read the three following articles published by American Bone Health:

1. americanbonehealth.org/medi...

2. americanbonehealth.org/medi...

3. americanbonehealth.org/medi...

I think that three articles mentioned above can help provide you an overview about the major key components that will help you take control of your bone health. If we take a closer look, of course, there is more to it than it seems. When weighing the benefits, risks, and costs associated with taking osteoporosis medications, you must discuss the following topics with your healthcare provider:

1. The drug’s mechanism of action (MOA) or how it works to produce an effect on your body

2. How the drug is administered (i.e. oral, IV, subcutaneous)

3. Consider all the benefits, risks, and costs that can be appropriately supplemented with an adequate yet nutritious diet and a monitored yet a healthy and active lifestyle. You can work with your healthcare provider to refer you to a Registered Dietitian (RD) and a Physical Therapist (PT) who have past experience working with individuals with osteoporosis.

4. Lastly, consider the side effects and rare events that are commonly linked to your drugs and what they may curtail.

They should all come in full circle to aid you in preventing bone loss.

We hope that this helps and we wish you all the best!

Sincerely,

Martha

[poddysss]

Well I've not taken my osteoporosis seriously until my latest scan sooooo the biggest frustration is fear, I feel as though I'm into the realm of don't dos rather than the i cans. I can't see how well I'm doing. I can't see the scale of bone building like you can see the scales when you lose weight.

I'm slowly getting my head round this with you guys help

Thank you

[christy81256]

Yes exactly. I see where you are coming from. All they say is well keep taking Boniva. You are too young not to be taking something. So I just keep taking Boniva because my doc pushes it just like all my other doctors have. They really push when it comes to meds. I had quit a few years back I am so confused as to what to do. . I do take calcium and Vit d. I do see my vit D score improve so at least I feel progress but with the osteoporosis all I hear is you need to keep taking Boniva. So frustrating!

[yogalibrarian in reply to christy81256]

I hear from a lot of people that they don't want to take the medications. But consider this.... If you had high blood pressure, diabetes, or had a heart attack, would you refuse the medications that your doctor prescibed? All of those conditions can be disabling (or deadly) if not treated. Osteoporosis can also be disabling or deadly.

One of the psychological challenges of treating osteoporosis is how long it takes to see the results on a DEXA.

Another challenge is that we all probably know someone (or heard a story about someone) who died of a stroke or heart attack or whose health declined due to diabetes. I think fewer of us recognize the stories of the consequences of untreated osteoporosis.

Please continue to get enough calcium and vitamin D — and consider your doctor's advice about continuing Boniva.

[Met00 in reply to yogalibrarian]

That's an interesting comparison, yogalibrarian. If I had a heart attack, I'm pretty sure I'd accept prescribed medication, but if I had diabetes or high blood pressure I'd want to address it through natural means - diet, exercise and supplements, exactly as I'm doing now for osteoporosis. I'm not totally anti medication, for example, I take painkillers and antihistamines when necessary, but if it's possible to improve my health without medication that's definitely my first choice now!

[yogalibrarian in reply to Met00]

Diet and exercise are my first choice too. (Personally I don't think supplements qualify as "natural.") But high blood pressure, diabetes, and osteoporosis are chronic conditions usually requiring long-term management. If they are not severe, they might be managed with diet and exercise. (But there can be long-term consequences for that strategy. My grandfather managed his diabetes for many years with diet and exercise--avoiding medications. But there was significant nerve damage from that approach.)

Many people are not compliant when taking their medications. And they are even less compliant when sticking to the rigorous requrements of managing a chronic condition with diet and exercise.

[Met00 in reply to yogalibrarian]

Actually, I was thinking of type 2 diabetes, I'd definitely take meds for type 1. I'd also consider meds if my alternative approach didn't work. For example, at the moment I'm refusing osteoporosis meds (took risedronate for a year, but it aggravated my IBS so I stopped nearly 3 years ago), but I'll definitely reconsider if I fracture, and perhaps also when I'm older and the risks are higher.

[christy81256]

I understand what you saying but osteoporosis meds have a lot of controversial information. Some say the affect your teeth if you have dental work , some say they make your bones more brittle and so on. So I really see no difference in my bones. They are no better now after years of taking meds. At least with high blood pressure pills or cholesterol meds your numbers usually improve. There is so much information telling us about all the long lasting bad side effects. I don’t know this is all very scary. I think of this each time. Take another Boniva.

[Siamang]

I listen to my body but still do yoga, pilates and gym classes plus aquarobics. My frustration is the fatigue and loss of flexibility at the end of the day. It’s staying active that energises me but I’m definitely a morning person.