Hello

[Js706]

Hi,

I’m sure a lot of this will have been discussed before on various posts but I haven’t had a chance to have a proper look through the forum yet.

I’m 26 and have been on high dose steroids for the last few years. I’ve been on adcal and vit D during that time but not bisphosphonates (despite me asking about it!) and over the last few years have had at least 3 rib fractures from very low impact activities (coughing, bending to lift things etc).

I had my most recent dexa scan a couple of months ago and found out yesterday when checking an appointment time on my GP records that I now have osteoporosis in my spine (not overly surprising I guess given the rib fractures and the fact that I’ve lost about 4cm in height in the last 3 years) and my left hip is osteopenic. My right hip bone density has decreased significantly from baseline in 2018 but is still in the normal range thankfully.

Then to top it all off I’ve had bad back pain this week after my computer chair broke and tipped me on the floor and it turns out I also have a T12 compression fracture.

Just feeling very sore and sorry for myself and at a bit of a loss!

What are people’s best tips for dealing with fractures and just grotty spines generally?

[veriterc]

Don't worry about asking - new people come on this forum all the time. At you in the UK? Because from the treatment you are NOT getting it sounds so i.e.your doctor should have explained about having the different conditions, no leave you to find out from a report. I've had same problems, so I joined the Royal Osteoporosis Society, took advice from them, found out name of top Consultant in my area, and insisted I get an appoointment with them. Your GP has to refer you if you ask. Good luck

[Js706 in reply to veriterc]

I am in the UK. Yeah... I won’t lie it’s all been a bit rubbish. Although I do have an appointment with my respiratory team on Monday, so I assume they would have gone through the dexa report then - I just happened to accidentally find it sooner (which I guess was lucky because everyone I saw on Friday said they wouldn’t have bothered sending me to a&e for an x ray if I hadn’t told them the dexa report!)

[veriterc in reply to Js706]

Just because you are seeing one team, DON'T expect them to consult with other teams - the NHS hasn't worked out how to do that yet! I speak from experience, and went over to Europe for a lot of treatment (I had a job that took me there) because their national health systems are more joined-up. You could ask your team "who is best person for me to see about xxxxxxx?" - I often found that useful,

[veriterc in reply to veriterc]

Incidentally, I have written about what I found out about Osteoporosis etc. on aftercancers.com