I've just registered with Health unblocked. I am a 65 year old female recently diagnosed with osteoporosis in December 2023...after all investigations Xrays and DEXA scan x12 compressed vertebral fractures were identified. I have had a zoledronic infusion, prescribed Evacal D3 and due to commence romosozumab injections. I have a resulting kyphosis.
This has all been a total shock and my journey familiar to others I'm sure. It would be great to share my experiences good and bad and learn from others too.
Written by
Almonds123
To view profiles and participate in discussions please or .
We just wanted to wish you a warm welcome to our community here, thank you for joining us and sharing. You mentioned feeling shocked in your experience, this is so very understandable considering everything you have had to process with your diagnosis. We just wanted to let you know that we do have lots of information (including videos) about living with osteoporosis on our website: theros.org.uk/information-a...
As it can feel isolating sometimes, we really hope you can connect with the wonderful members of our community and continue to share your story.
I have just registered and was diagnosed with osteoporosis following months of exceptional pain after a MRI 5 compression fractures also kyphosis, I have a very protruding tummy which causes me distress because it is so uncomfortable especially in the evening. Nice to connect with you
Hi SG i thanks for replying it is great to connect, My kyphosis and protruding tum cause me distress too. I think by the end of the day my back is tired and I feel I'm stooping forward more. I've experimented with different clothes to try to flatter my new shape.
Hi Almonds and welcome to the group. Goodness I thought I was bad enough with seven fractures but twelve my goodness you must be suffering. I find it hard to do things. I only do what is necessary. I’ve got a cleaner and an ironing lady otherwise I get my food, wash up and do the washing. The washing is quite easy but the washing up is really painful.
Hi Mavary thanks for the contact and your kind words. I am doing more now than I was 6 months ago. I don't do hoovering or mopping though ,my husband does those chores. We've always shared housework. I'm considering a lighter cordless hoover possibly at some point?? But not taking any risks. Only doing what is necessary sounds sensible.
Hi almond. You are lucky that you have someone to help you. I’ve got a GTech cleaner which I can use if necessary. I won’t let the cleaner use it as they don’t last too long. Just using it occasionally it should last me for years. My Sister had one and it only lasted about a year to a year and a half. She was using it all the time. I wouldn’t use the big cleaner because of my back.
I too have just registered with this group and what a revelation to find others feeling the same as me.
It took me 6 months a private clinic and a private MRI to get diagnosed with two spinal fractures following a faint (caused by a virus) onto a ceramic bathroom floor in November 2022. I was presenting with severe pain in my side and a swollen abdomen - subsequently I realised these were muscle spasms. It was a physio who identified the painful area in my spine corresponding with the area of abdominal pain and pointed me in the direction of the private clinic - the wait for an NHS MRI at that time was several months.
Following diagnosis I was put on Alendronic acid by the GP and that was it - no referral, no follow up. Thank goodness for the ROS, their website and their specialist nurses whom I have cried to on the phone as felt abandoned by the NHS. 18 months on and the pain has eased somewhat and I am learning to manage the flare ups with muscle relaxing medication and coming to terms with what I can no longer do, but exploring things I can still do.
A recent Dexa has identified -3.5 in my spine with a high risk of fractures and a loss in height, hence the tummy issue mentioned by others. I am booked for a private REM scan in September so will be interesting to see the results of that.
Hi Granniebythesea that's a great name, wish I had chosen Nanabythesea haha.
I've had a long frustrating and expensive journey too. Been seeing a chiropractor privately for 10 years off and on but this didn't help my pain in September 2023. My GP referred me for a physio assessment ,who I saw 3 or 4 times. I requested an xray or MRI as I had no diagnosis and my pain was severe but this was declined by GP and physio did not think it was likely to be helpful??
I had to ask a GP to refer me for a private MRI. But I had to see an Orthopod consultant privately for this to happen and a further follow up appointment with the orthopod to tell me I had x3 compressed fractures identified on the lumbar MRI. I was then referred to Rheumatologist who I chose to see privately as the wait would have been months and possibly longer in my area. So mid January I had an appointment and commenced Alendronic acid and the rheumatologist requested a DEXA, scan, a full thoracic and lumbar spine xray and a series of blood tests.
I had a virus late January and required x2 courses of antibiotics for a chest infection, the copious coughing exacerbated my back pain. My pain had predominantly been in my lumbar area but my pain was severe and mainly in my thoracic region now. The full spinal xray identified x12 compression fractures. There was an overlap with the lumbar MRI showing further fractures had occurred since December 2023. Perhaps x4 were older but x8 were considered acute. Due to the further fractures and increase in pain I was given zoledronic infusion. Because I had seen the Rheumatologist privately I had to pay for the treatment.
Like you SG I felt let down by the NHS. I had been a nurse for the NHS for 40 years. But I felt I had no option other than to seek private care input as my condition required immediate attention. My DEXA scan results show severe bone loss and I meet the criteria for a concurrent treatment. I am due to commence romosozumab injections next week.
Like you I have also found the link with the ROS invaluable. I had nearly phoned the nurse helpline several times in distress but held back. I have been upset about my kyphosis and protruding tum. I try to remain positive and active. I can do a lot more now than I could 6 months ago. Stiffness and pain are ongoing but manageable. I have a routine of stretches and resistant band exercise but am frightened to commence any impact exercising just yet. Walking being my main exercise really.
I had not heard of a REM scan before and had to look it up. I hope it goes well for you. Thanks for the contact.
Oh my goodness I’m so sorry to read all of this, puts my issues into perspective ….. 😢😢 I wish you better times going forward.
I saw my GP yesterday who has now referred me to a specialist so that’s progress - hoping to discuss this new drug that’s been approved by NICE. The GP told me not to waste my money on a private REMS but I’ve already booked it as interested to see the results and talk through my condition with a spine expert.
If you look at the Osteocare.co.Uk website you can see they have mobile clinics all over the UK for the REMS, which has been used un the US for sometime.
I’ve realised that these days with the NHS you have to do your own research and be proactive with your health - it’s not the fault of the GPs - they are just over run and cannot provide the care we used to expect from them 30 years ago, sadly.
I totally agree,its not the NHS professionals fault but the system.Pointing fingers doesn't help. But when I look back over my experience I think there where several opportunities when the possibility of osteoporosis was overlooked. This includes chiropractor, physio and gp.
I was originally 5ft 4in but now 5ft 1in...
I have advised my sisters to also be checked. My elder sister's DEXA result identified she too has osteoporosis. Fortunately no symptoms. My younger sister has not had a scan yet.
My daughter who is 39 has been advised to take calcium and vitamin D by chiropractor. She has a 6 month old baby and had back issues post pregnancy. Fortunately after manipulation she feels well.
Proactive screening needs to be available for everyone.
I was diagnosed with osteopenia at much the same age as your daughter is now after my maternal grandmother and subsequently my mother were diagnosed with osteoporosis. I was given calcium with vitamin D and monitored by UCH in London with regular Dexa scans until I’d gone through the menopause. I think this early intervention might have staved off full blown osteoporosis until the ripe old age of 67 so I hope it’s the same for her 🤞🤞
am also booked for a private REM scan, here in Canada - in Sept. It is my own cost for this test, but I really want to get a better picture of my bone status.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Improved t score for osteoporosis.
Diagnosed with osteoporosis at age 32 - anyone else in similar situation?
Rescanning
