why did nobody tell me this

[wecanhelpeachother]

I'm a bit annoyed and very worried.... when i was told i had O the rheumatologist just said 'you're already on HRT, that's what I would recommend, keep at it you're doing the right thing'. And that's all. He didn't tell me anything at all about how to manage the condition, I didn't even know about ROS until a month ago. Or what I should and shouldn't be doing. Maybe my fault for not being proactive. Anyway, because I have injured my leg and can't move (for the past 3 months) I was trying to make sure my muscles didn't completely disappear so I was lying on my bed raising my legs in the air. Somehow I got brave and ended up in the yoga 'candle stand' (can't describe it - but a web search will show you a picture).

Anyway now I have found out that bending the spine especially with any weight loading is a bad idea. I'm completely paranoid that I've managed to get a compression fracture without realising it. Of course I can't go to the GP and ask for an MRI 'just in case' if I don't have symptoms, I'm hoping that if I had damaged anything, I would have felt it at the time (I didn't feel any pain in my back).

I would love to find a physiotherapist with special knowledge of osteoporosis but it's not easy so far.

Anyway i hope everyone is ok and at least we have a bit of sunny weather in the uk this week.

[28Harvey28]

Hello. Diagnosed and no advice or signposting to information, help or support is sadly a story all too often heard. The good news is you have found this site and the ROS website. There is a wealth of information and advice on this and the ROS nurses you could talk to, or email. It is difficult to know whether HRT is the right treatment for you and I wouldn't try to offer advice on this. Treatment could take into account, age, severity of osteoporosis, health conditions and fracture risks. Having suffered with spinal fractures I think if you are not in pain then you don't appear to have caused any damage with the yoga exercise you performed!!! Probably not a good idea to try this again at the moment but who knows in the future. I hope your leg improved and you can become more mobile soon which will likely help you to feel stronger. Wishing you all the best

[dog45678]

Hello, I'm sorry you lacked support and guidance, and no it's not your fault for not being proactive. I know of a few excellent physios, depending on where you can get too. Have you thought of contacting Dr Birch for a REMS scan? He would be able to give you really valuable insite into your bone health.

[HampshireELM]

I can completely understand how you're feeling. I had a Pilates teacher who wasn't trained for dealing with people who had osteoporosis and I was still doing roll downs with her.

It might be worth having a look at the YouTube videos created by Dr Lisa Moore in the US - look up "YouTube brick house bones". She has done many videos and the right (and wrong!) exercises to do. She's recently done a longer one which you have to pay for called something like "Journey to Fracture Proof".

There's also a other physio called Margaret Martin who does work on YouTube.

I hope this helps.

[Meuslialways]

Sorry to hear about your Osteoporosis diagnosis and your Doctor, who is not helpful or knows about Osteoporosis which many dont unfortunately. My GP told me years ago that they spend 15 mins at Med School on Osteoporosis!!If you can afford it, book a private appointment with a Consultant who will put you on the right road. More than that phone the Nurses at ROS who are great and very knowledgeable.

I'm very lucky where I live in West Sussex that I have so much support on NHS and every 2 years from my Consultant privately.

Dont get down hearted as worrying wont help, think positive about what you have done and hopefully soon, can do. At 81 I am crippled with Osteoporosis but I want to live as I like living so have to think positive.

Good luck

[wecanhelpeachother in reply to Meuslialways]

I hope that when I'm 81 I'm as kind and selfless as you with helping other people.

[Teddysamson2]

Hello, Just for your reassurance after your yoga shoulder stand and fracture risk, this is how I fractured L1. All I can say is it was very loud and crunchy when it happened(!), and followed by severe pain. This is how I found out I had osteoporosis. I was told to avoid any kind of Pilates roll down or twisting side to side movements hope this helps. I take HRT and Risedronate for bone building, Rheumatologist is prescribing Romosozumab shortly due to my age and future fracture risk.

[wecanhelpeachother]

Honestly this is the most helpful board and community. Everybody is so kind and supportive. Thank you 😊I just wish I could sort out my weird ankle so that I can actually do the recommended exercise for osteoporosis. It's so frustrating to know that I need to do impact exercises but I also can't bear weight while the ankle is dodgy ( I was convinced it was a stress fracture but apparently it's not. Unfortunately that means there's no fix in sight. 😥 )

Thanks for your messages of encouragement. I'm going to check out all those resources now ....

[Graceissufficient]

Yeah, my compression fracture the pain was excruciating at first. You got away with it, and you will be careful now....

[Verauk]

Sad about your case and also as someone said here, that her Doc spent no more than"15 min" in Med School talking about Osteoporosis.

I suggest that you whatch on YTUBE videos of margiebissinger6980, they are all excelent and teachs a lot.

Good Luck

[Rusty4]

I’m sorry you have a problem with your ankle, but there are plenty of seated exercises you can do for osteoporosis. Google ‘chair yoga for osteoporosis’ or ‘seated exercises to strengthen bones’ Good luck!