I found out I had osteoporosis in 2018. I had a hip replacement, but was left with unbearable back pain. Eventually after many fruitless doctors visits I had a MRI scan, this showed I had five spinal fractures. It took many months for the bad pain to go, and it has left me with mobility problems. I also had to take early retirement on health grounds, so it was life changing. I think I am still shell shocked now!
On the plus side, I do still have a good life. I use a rollator to walk, and although it does restrict me, I have still managed to go on holidays, meet friends etc. Although osteoporosis can be lonely, most people do not really understand what is wrong with me, and why I am not fully mobile. I have never met anyone else with osteoporosis that has broken bones like this, so that is why they have joined this group.
Welcome to the group no one really wants to be part of and I’m not surprised you feel shell shocked. Your life has changed completely. It is really good that you can still see a positive side to life.
I think you will find lots of people on this site who are probably in a similar position to what you are so hopefully they will come along and comment.
You might be lucky enough to live in an area where there is an ROS support group where you could meet other people in your situation. Some of the groups look to be very active and have interesting looking meetings but it depends a lot on where you live.
I’ve just had a thought - you could also ring the ROS helpline just to talk over your circumstances with their nurses. It might be worth doing that too.
Spine fractures are the very worse pain so I really feel for you! I had one November 22 and I really don't want another so I can only imagine how having 5 would feel! I nearly gave up totally so it's good to hear you are still getting around. Its dreadful when you know what the pain feels like but it takes so long for anyone to listen to you, it was only my rheumy that listened to me and got me an x-ray. My GP and a & e said I'd pulled a muscle for 4 weeks when I knew it wasn't that! I wish you well and hope your pain calms down very soon. X
Thank you, and I’m so sorry you’ve had a spinal fracture too. Not being listened too by doctors is the worst thing isn’t it! Even after my MRI results my GP gave the impression that he thought I was making a fuss about nothing. It’s taken years for me to get proper information, so thank goodness for the ROS. I wish you well, and thank you for replying x
A physio rang me from my GP's the other day and said I'll send you some gentle exercises specifically for spine fractures by email. The ones she sent me were off the ROS website would you believe! I'm doing them every day now as I just didn't know which ones I should and shouldn't be doing. Hopefully they will help strengthen the muscles in my back as she said after compression fractures youre back muscles loose strength from resting and not being able to move so your bones are taking all the weight and movement hense still having pain nearly 2 years on. I just wish they'd have told me this 18 months ago.
I haven't had a fracture but spinal stenosis and found exercise can help. My physio told me not to do ones which aggravated pain, but the other ones are good for strengthening core muscles. I see ROS have a range of exercises for doing different things.
It’s crazy, but thank goodness for the ROS. They have given me the support that I couldn’t get elsewhere. Those exercises have helped me a lot. I’m not completely pain free now, but they did help to improve the pain.
We just wanted to pop in to wish you a warm welcome to our community 😊 Thank you for your kind comments about our helpline, we are so glad to hear that it has helped you! The way you describe the experience as life-changing I'm sure will resonate with lots of our wonderful members. We really hope you find the support and connection you are looking for here.
In case anyone is coming across this thread, we do have lots of information (including videos) about living with osteoporosis on our site: theros.org.uk/information-a...
No, and I’m mystified myself! There’s no family history of it, and my sister remains unaffected. I’ve always eaten properly, and have always been overweight. I have had Type 2 diabetes for twenty years, but I don’t think any of the drugs I have had for that would have caused it. Annoyingly a few years before I had the fractures, my company arranged for us to have “osteoporosis scans” with a private company that came to the workplace. With hindsight I think that was useless, they just scanned our forearms, and my results showed no signs. So I had thought I wasn’t in any danger.
I’m under the NHS in the Uk, so we don’t get to choose what we get tested for, sadly. I have had separate blood tests for thyroid disorders, and full blood count. I take prescription vitamin D and calcium supplements.
They need to rule out hyperparathyroidism as a cause and you CAN ask for specific tests to be done on the NHS. Hyperparathyroidism causes osteoporosis, it caused mine and following a small op, my bone density has improved to the point that i no longer have osteoporosis !
I've asked for parathyroid tests on a couple of times and they've been willing to do it. Some doctors will say that your calcium level is fine, therefore they won't test the parathyroid, in which case you need to enlighten them about normocalcaemic hyperparathyroidism, where parathyroid levels can be elevated despite normal calcium! My GP has also agreed to test my Vitamin D and calcium levels twice a year so I can monitor these, which is just as well, because on two occasions my blood D level has suddenly shot up too high, meaning I've had to reduce my supplement intake.
Thank you, that’s really interesting, and something to look into.
Dear Hidden. I am so sorry for the pain you have experienced and your now somewhat restricted lifestyle. As you say, so many people are not able to appreciate how life changes after suffering compression fractures of the spine. I had an accidental fall which resulted in a broken hip and a resulting Dena scan revealed that I had osteoporosis. Two years later after experiencing sudden and extreme pain in my back resulting in a visit to A&E, a diagnosis of 3compression fractures was given. The extreme pain has gone, but I live with daily chronic pain and discomfort. I also, oddly, have some pain in my right side if I walk any distance or stand for any length of time……possibly nerve pain from my partial T12 fracture, but who knows? Some people have noted that the way I walk has slightly changed. My reply to that is that I am grateful that I can still walk! Keep strong and make use of the really good information provided by the Royal Osteoporosis Society. Best wishes to you.
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OSTEOPOROSIS THE FORGOTTEN DISEASE YOU ARE ON YOUR OWN.
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