Hi everyone, I thought it might be a nice idea to start a discussion where people can share their experiences to date of being a younger person with osteoporosis. There’s no obligation to share, but I’m sure many younger people with osteoporosis would value hearing from people who have gone through similar things to them.
For me - I’m Jim, I’m 36 now and was diagnosed with osteoporosis when I was 27 following a spinal fracture while I was on holiday in Portugal. I remember being so confused as to how I could possibly have osteoporosis – a condition I associated in my mind mostly with older women. It turns out that a drug I received as a teenager – corticosteroids – to treat some other health conditions had probably contributed to me never building up the bone mass I should have done in my youth.
After my diagnosis I was prescribed alendronic acid, a bisphosphonate, and I took up running to try and build up my bone density. For a long time, though, it felt weird to tell people that I had osteoporosis, as they were often just as confused as I was!
These days, I’m far more confident talking about osteoporosis and my other health conditions, which is why I decided to get involved with the Royal Osteoporosis Society. Thankfully, my DEXA scans show that I’m not losing any more bone mass, so while I don’t know what the future holds, I’m less anxious and more at peace with living with this condition, and doing what I can to spread the word that, yes, you can be young and male and have osteoporosis, and no, it’s not the end of the world!
Please feel free to share your own experiences if you’re comfortable doing so, as I’d love to hear them.
Hi Jim, thank you for sharing your experience. It has helped me to feel less ‘unusual’. I was diagnosed in my early 30’s but I had to fight to get treatment (Risedronate and now Ibandronate) because I didn’t meet the NICE guidelines because of my age. I fractured my hand, and that made Osteoporosis a reality. Prior to that, although I had a diagnosis, there was little information available about what that meant for my future, i.e. how having it in my thirties will impact me in my later life. I hope things improve for younger people in the future, that they will get support and treatment - something that I think is lacking.
Thanks for sharing your experience Minnie. Impact in later life is also something I worry about - I’m relatively healthy now, but I hope I’ve got at least another 50 years ahead of me and I expect at some point in the future it will be inevitable that I have further fractures, even if I do everything right to strengthen my bones. I find communities like this one helpful though to keep me optimistic about the future!
Loved reading everyones stories, I’m 24 with osteoporosis was diagnosed at 22 still all very new to me and something I am deciding I need to learn more about!
Wow, thanks for sharing your stories. This helps more than you know, you are all so brave. I’m Esther, 35 female, living in London, and just been diagnosed and currently in month 3 of crutches with my second femoral stress fracture in 3 years (this ones a bad one). Long story cut short, history of severe eating disorder, which lead to fracture number 1. I then tried to get healthy, but never had doctors look at my bone health, and thus now I’m healthier and competing in ultra-cycling races and found a huge passion for cycling, only to have another stress fracture (throw in some rib fractures along the way too) as I just never got my energy balance right and wasn’t doing an impact sport or the strength worth to support my bones. I’m about to start teriparatide and have a lot of work ahead of me. Right now, I’m just really wanting to get back to being able to walk, and try and raise awareness of the impact of ED and RED-s on bone health, even if it’ helps one other person it would be worth it. I would love to learn about how others learn to live normally again, right now I’m terrified of being injured again and have no idea how I’m going to get over that, especially in sports. Hope you are all well, and looking forward to the Vit-D filled spring which is around the corner!
Thanks for sharing your story Esther. Very sorry to hear that you’ve had a bad fracture recently. Do come join our next younger person’s online session on the evening of Tuesday 3rd March, as there are definitely some people who attend who have similar experiences to you.
Hi all, I’m Bethan I was diagnosed with osteopenia in my lower back and left hip at 41. I went for a scan as my mum has severe osteoporosis and five fractures in her mid back without ever falling. Im having difficulty sleeping due to discomfort and was wondering if anyone has any hints or tips please? Can’t sleep on front, back and left hip is just too sore after a while so any tips at all gratefully received as it’s getting much worse. I’m on calcium and vit d and next due dexa in 2029.
I’m new to the ROS having just found out on Wednesday this week that I have osteoporosis. This was one week before my 50th birthday so technically I have just been able to sneak into your younger person’s group. I am happy to leave once I hit 50 next week if those are the rules but it’s just that I am a fit, healthy, very active 49yr who had just spent the best part of the long weekend learning a new hip hop dance routine and a lot of the material for osteoporosis seems so alien as it is largely aimed at more senior people. Not a great birthday present to learn about the diagnosis and a t-score of -3.9 after randomly asking my GP for a Dexa scan when being referred for blood tests due to multiple silly infections. I only asked as an aside as I had read about Dexa scans in a newspaper article a couple of days earlier. I have spent the last couple of days feeling a bit sick knowing what I have been up to and all kinds of heavy lifting and HIT classes in complete ignorance of the state of my bones. I think that I’m still in that initial shock phase. However, treatment started and now onwards and upwards as I’m determined to find things to be able to carry on having fun in life albeit with some adaptation (and no hip hop dancing!).
Hi Senay, I’m nearly 51 and in the young person’s group so although you may be one of the older (and wiser ) members you are most certainly very welcome. Thanks for sharing your story. Can you join us for the 1 hour online meet up tomorrow evening?
Hi Sam,
Wonderful and thank you for the welcome into the group. I have secured a ticket for the event tomorrow and look forward to meeting you all tomorrow
Kind regards
Senay
) members you are most certainly very welcome. Thanks for sharing your story. Can you join us for the 1 hour online meet up tomorrow evening?