Support for the youngsters (diagnosed with stage 4 at 54)

Hi Simran, I was diagnosed with osteoporosis last year in October and at 32 I was shocked. My doctor and me believe it came due to my deporevea birth control but they can't 100% confirm. It came to a shock and it came with a lot of feelings. Anger depression being the hardest ones. It doesn't help that anytime I talk to a provider I get " your to you g for this" speech. I know I'm too young for this but this is my life. It took me 6 months to see a specialist and 2 months of testing and reviews to get treatment. I just started my treatment this week and it's been hell to try to get people to take me seriously because of my age. Things I can say have helped me. Find a groups or a therapist so you can vent, having this is exhausting and you need to have someone to talk to. Second, write down how you feel and what hurts, when you go to the doctor there going to ask so many questions and it's hard to remember with so much going on. If you write down things it makes it easier to remember what you wanted to talk about. Last thing I can advise is trust your body, everyone is different and what works for someone else doesn't mean will work for you. I wish you the best in this journey , know your not alone!

I was diagnosed with osteopenia at 53 and osteoporosis at 57. I've been on some kind of treatment for 7 years now and fractured a vertebra at the start of 2024 so was in severe osteoporosis at age 62.

My father went through the same thing in his 50s and 60s but unfortunately never received any treatment as there wasn't much available at the time. He was very frail and stooped by the time he passed away at age 75. I do think my osteoporosis is genetic as I don't have any other risk fractures other than being female and going through menopause. I was on HRT before diagnosis so even that didn't help.

I would recommend finding a good doctor to help you navigate this. An endocrinologist specializing in osteoporosis would be my recommendation.

You might find podcasts and books with Dr. Keith McCormick to be helpful. He is a former Olympic athlete who was diagnosed with severe osteoporosis in his 40s even though he is very fit and healthy. He is 71 now and was able to stabilize his osteoporosis with medication early on but has been off meds for years.

It can be a shock to discover that your bones are not as strong as you thought they were but learning about diet, exercise, medication, and hearing positive stories from people who live with this disease has helped me a lot.

Thanks so much, Kay and so sorry you are going through this.

I did a quick scan of studies and it looks like Depo Provera is correlated but a few articles say BD should improve after stopping Depo.
https://pubmed.ncbi.nlm.nih.gov/40372778/
https://pubmed.ncbi.nlm.nih.gov/36699167/
I think what has been hardest is that I look fine so everyone treats me that way while internally I am always a little or a lot anxious about fractures. My PCP and gyno were unhelpful. I am frustrated that the axis I referred to above around depression and anxiety has not come up. I had to do that research on my own. Fortunately, I do have a great therapist.

Oopsie, thank you so much for sharing. I really needed to see this: "I was on HRT before diagnosis so even that didn't help." Of course everyone is different, but I had been diagnosed with osteopenia in my 40s. I had no idea I'd fall off the estrogen cliff in menopause and have kind of been torturing myself with that "what if" around what my T-scores would have looked like if I had gotten on HRT while I was in perimeno.

I have actually started working with an Ayurvedic doctor because the treatments offered by my doctors can only be taken for a few years and potential side effects seemed really awful. I figure I will start here and then see where my scans are in a year. I am going to get Dr. Keith McCormick's book "The Whole-Body Approach to Osteoporosis." Thank you!