I am new to the group but have had osteoporosis for many years. I have had two previous episodes of back fractures but the current one is the worst. I am 63years old and have taken prednisone since the age of 10 due to my rheumatoid arthritisI I currently have have six back fractures L1-5 and T10 I believe they are all compound stable fractures but I have been referred to Addenbrookes for confirmation of this. I’m currently receiving conservative Care.
the most difficult manoeuvre for me is moving from lying to sitting which is unbearably horrifically painful and I recently fractured and fractured other vertebrae doing this manoeuvre
could anybody tell me how much time elapsed on bed rest before they were able to reasonably comfortably move from lying to sitting?
This would give me some hope that I will recover as at the moment I can’t see any light at the end of the tunnel
I would also like advice on any medication for my bones as I was taken off denusumab injections in sept and am only taking Adcal at the moment!!
When you were taken off denusomab did no one tell you it was important to go straight onto a relay drug to avoid rebound fractures? If you weren’t told that then I think you should have been your consultant should have had some sort of ‘exit strategy’ for stopping denusomab. It sounds as if you might be in limbo at the moment. I would want a definite plan.
You could contact the secretary for the rheumatology dept and tell them you stopped denusomab in September and are currently only taking Adcal. You could also speak to your GP about what is happening. Also you could contact one of the ROS nurses and ask for advice or ask to speak to the hospital’s Fracture Liaison Service and see what they have to say.
What is meant by conservative care? Are there plans to restart you on osteoporosis meds?
I think the most pain free way to get from lying down to standing is if you can roll onto your side while on the bed and then drop your legs over the edge of the bed. Once you are sitting on the edge of the bed you can stand well that’s how I do it.
I hope you can get some answers about your condition.
Dear Lizzzie2 this is really helpful advice I will add go to my list of contacts as I have been trying to contact my rheumatologist without success so far. And I was thinking of making contact with the FLS so will do this too as I know they have one at addenbrookes
I do use the method you describe for sitting up but can’t do it without additional support from someone else have you heard of any equipment that can help?
And how long are people on bed rest for before they can get you with too much pain or break more vertebrae’s?
Thank you again for your advice it jabs beeb very helpfully kind regards
Well, they have or used to have a helpline where you could speak to a Royal Osteoporosis Society nurse about your situation and who would help with any queries. I’m not sure if it is still running
I did find this for you - about the Cambridge local group where you can meet other people in the same situation.
Not sure if it is run by the fracture liaison service or by the ROS or by someone who has osteoporosis and just wanted to start a group. Here is what I found on the ROS website
Did your doctors not give you any advice about stopping denusomab without offering a follow up drug or mentioning rebound fractures? I wonder why they didn’t?
Sorry, I don’t know of any helpful aids when it comes to getting out of bed. I would definitely try and make contact with the fracture liaison physiotherapist who could perhaps help you with that.
I imagine the FLS would also be able to advise about bed rest etc. I always tended to avoid lying down for me it wasn’t all that helpful although I did like lying on the floor with my knees bent, on my yoga mat I still do that and I roll over onto my knees and use the furniture to help me up if I need a bit of help but I imagine with your #vertebrae you might not be able to do that.
How long are they going for the conservative treatment?
I like you was fracturing vertebrae when going from lying to sitting.
The way I solved it is I purchased an orthopaedic arm chair. The chair is operated by remote control. It tilts quite a way back, on the press of a button the seat raises up enabling me to get to a standing position. I slept in this chair as the foot rest also raises level with the seat for about two months until my vertebrae were stable. It might not be ideal but it solved my pain issue when going from laying to sitting.
I have just finished a two year course of daily injections & had my first six monthly injection a week ago. Some side effects but persevering with them.
Re laying down, I’ve not laid flat for 5 months, I have L1 - L4 fractures, stable base plate fractures. I’m propped up in bed, with a pillow under my knees, then roll to a sitting position. I use a walking stick to help me then stand up out of bed.
Sadly I’ve not been started on any medication or physio, I’m still waiting to see a GP to get a referral to the FLS.
I’m 55 and stunned how badly woman with osteoporosis are treated. Thank goodness I found this forum!
