I had a DEXA scan a few weeks ago and the results came back saying I have osteoporosis in my spine. This was a complete shock. I am not in any pain however there are indications of possible vertabral fractures. I’m desperate to find out quickly what is going on with my spine and feel I cannot move forward until know. The presence (or not) of fractures will influence what treatment to have. Plus not knowing whether there are unhealed (or healed) fractures is affecting my confidence going about daily life. I’m frightened that if I move in the wrong way or too much I’ll make things worse and have stopped doing the things I usually do.
It would be really helpful to know from others how they got their vertabral fractures diagnosed. X-ray or MRI or Vertabral Fracture Assessments? How/where did you get them done (NHS/private)? Were they adequate or did you need to be referred for further tests eg. If the X-ray wasn’t adequate did you have a MRI next? Is it better to have an MRI if there is suspected nerve damage? Any experiences and insights in regard to how difficult or straightforward it was to find out about your spine fractures and navigate the system really.
Hi Bex so sorry to hear what you are going through and I know from my own experience it’s a really upsetting and scary time when you get a diagnosis of osteoporosis. For me I knew I had done something terrible to my spine immediately. I was picking up a three year old and felt a sensation like elastic snapping in my back together with excruciating pain. I was told it was either a facet joint sprain or a pulled muscle. I couldn’t get in or out of bed and had to sleep in a chair for weeks. Couldn’t get in or out of the car and at times literally could not put one foot in front of the other as the pain was so bad. I was referred to Musculoskeletal who insisted it was muscular and I stressed I thought it was far worse. Over the course of two years the same sensation happened half a dozen times and months of pain and debilitation recurred and when eventually I noticed prominent spinal vertebra showing my GP sent me for xray. This showed fractures and a subsequent MRI confirmed 7! I then had a DEXA which showed a spinal score of -4.2 which confirmed Osteoporosis and I’m now on Romosozumab self injections to build new bone. My story I think resonates with others in terms of the pain and slow recovery but then there are others who seem to suffer much less following fractures. To me this says that everyone is different and I think in the absence of imaging it’s impossible to say conclusively if you have or have had fractures. Why are fractures suspected? As you say treatment will be determined by whether or not you have had any so I think that’s the starting point for. you so you can get answers and take it from there. Take care and good luck
Hi Piglet, thank you for your message. I’m so sorry you’ve had an awful time of it. Unfortunately it does not surprise me that you weren’t listened to as this happens a lot. The consequence you suffered in pain for a long time. How are you feeling now? I hope the Romosozumab improves your bones. My physio suspects I have fractures and nerve damage. And I too have a prominent spinous process. But I’m not in pain like you were so my emotions have swung from being upset and scared to sort of denying a bit that there is anything major wrong. I think I need a scan done so that I and the medics know where I am. I’m not that keen on too many X- rays and was hoping that could be skipped and just go straight to MRI but I guess that’s not how it’s done.
Hi Bex, I am in a much better place thanks as my fractures are all now finally healed and the awful pain has gone. I still struggle emotionally though with a height loss of 4 inches and changed body shape. I’ve always been a slim size 10 and now my waist has completely disappeared due to the compacted spinal structure after compression fractures. I’ve had to accept that this is me now and I have to stop grieving the ‘old me’ .
I do agree that you probably need some imaging and MRI is preferable as you are not subjected to any radiation during MRI but it is more costly therefore sadly not always a first line choice over Xray. I think with the weight of your Physio’s opinion it might be enough to sway the justification for it to be done. I really hope so as you need to know one way or the other for ongoing management. I feel really strongly that had I been listened to right back at the beginning my story might have been different. I might have known straight away that it wasn’t muscular pain and was in fact a fracture and could have had a DEXA scan at that earlier stage and perhaps not have gone on to suffer multiple further fractures. I think this is the point you are at now so it’s vital for you to get answers. As much as none of us likes to make demands I think that when the situation dictates it we should do so. I have learnt that to my cost and sadly can’t go back 4 years. You really need to push for the imaging and the answers you need now so you now where you are at. Let me know how you get on.
Hi Bex, sorry to hear of your diagnosis, I totally understand that you want to have a clear understanding of what’s going on with your spine in terms of fractures. It is interesting that you had a Dexa scan first, as this kind of referral before an X-ray or MRI is quite precious to the NHS, I assume based on cost. When I was first diagnosed it came via my chiropractor as I found her to be far more helpful & informative than my GP. Fortunately, I was on private health insurance then so no cost to me for the MRI. A couple of years later I was once again in extreme pain & was just told to take paracetamol - which didn’t really help at that stage. By this time I had retired but I chose to pay for an MRI, for which the GP gave me a referral. The results confirmed my suspicions & my treatment addressed accordingly. Whilst I object to having to pay for the MRI, I would have had to wait a long time on the NHS but at least for around £300 I knew what was happening to my spine & could address my lifestyle, diet & medication accordingly, although I do appreciate that not everyone can finance such a diagnosis. I have learnt almost everything that I know from the Royal Osteoporosis Society, their videos, their factsheets, newsletter, nurses & this forum. I wish you well on your journey.
Hi Piglet I was diagnosed with osteoporosis in March 25, initially doctors said it was muscular strain should get better in 12 weeks I contacted the doctors after 7 weeks with unbelievable pain I have never experienced such a pain doctors advised to wait 12 weeks as muscular strain can take that length of, I decided to have private MRI which confirmed I had 3 spinal fractures doctors did not listen and didn’t want to spend the money. I have sever spinal bone density of -4.25 doctors put me on Alendronic Acid following October 25 I had further 2 fractures in my spin was referred to rheumatology got the appointment in June 26 I was shocked when they advised me both my hips are -4.25 which doctors did not advised me of it. Now I am waiting to change my medication from Alendronic acid to Teriparatide daily injection for two years I am still waiting for the board to agree as the medication is expensive I am so worried as I can live a normal life thinking I may have more feactures, I am in a lot of pain and still get muscular spasm between my spine when doing light house work i have to redt evety 20 minutes even when getting ready in the mornings I was first have a rest then get changes. Dose the muscles on thd back supporting the spine get strong? I am doing exercises but its not improving i am so low emotionally it does get me down I have list 3inchs from my hight lost my waist have pouched stomach had to change the style of my cloths its so depressing.
Hi Player, your story echoes mine in many ways. One thing that I’m aware of in general is that until I was diagnosed myself, I knew very little about Osteoporosis. What that shows is that there is so little awareness and knowledge about the condition. We have smears and mammograms but I for one had no awareness of the need post menopause to protect my bones by ensuring adequate Vit D3 and calcium. Also my medication for under active thyroid and my mum having OP meant I had perhaps a greater predisposition to it but it was never on my radar or mentioned at ‘well woman checks’
I do hope the funding you need for your medication is agreed. My NHS Rheumatologist had to put a request through for my Evenity (Romosozumab) but she said it was a medication I needed to prevent any further fractures and it just had to go through the appropriate channels. Fingers crossed all goes well and you hear soon.
Oh and meant to say, the awful muscle spasms you are experiencing sound exactly like the ones I had in the first 6 months or so after each fracture but I’m pleased to say they did eventually settle down and I am pain free now. It’s very hard to see the end point though when you are in the thick of it. My fear of more fractures in the early days was so high that I thought every cough or sneeze might cause another one. I was fearful of the even light housework but as time has gone on the fear has lessened. I know my limitations now though and won’t lift anything other than very light bags and I don’t lift pans or dishes in and out of the oven. My husband has taken retirement from his self employment a couple of years earlier than planned so that he is around to help with things I once did myself without thinking. Every cloud…..
I have just been diagnosed with osteoporosis after having back pain and not been able to walk far since last October. My story sounds very much like all your stories. I was sent to physiotherapy around December time and he just sent me home with a list of excersise to do. I suspected it was worse and asked if I could have a mri as it shows alot. He said to me it won’t show anything!!!.it got to February and I was still bad, went back to my doctors and demanded a mri. Low and behold it showed 2 fractures of the spine. I didn’t get the mri till March. They suspected osteoporosis which I had never thought of. Put me in for a dexa scan which I finally got on the 14 July. It was confirmed osteoporosis on a high scale. I am now waiting for them to decide what treatment, he said something about injections. I am very scared of getting any more fractures although I think my others have healed a bit as I am not in as much pain. I also have had body changes,my tummy sticks out more and I can’t seem to stand up straight. I think mine were caused by a sneeze or cough as I remember getting a pain. My whole life has changed and can’t hardly go out. My advice to anyone is get a mri scan as soon as you can, they try to put you off but it shows alot. Karen
The more stories like yours and mine Karen the more there is a common thread that more awareness is needed and more importantly we need to be taken seriously when we present with these acute symptoms. Globally We are actively encouraged to be responsible for our own health and mindful of changes but then when we are dismissed it’s a hard pill to swallow. MRI’s etc are expensive and are not routinely ordered but when we are saying we think something is really wrong we need to be listened to. I worry looking back that pre diagnosis the exercises I was given for a ‘muscle pull’ by physio could have actually made my (then unknown) fractures worse!
After lifting a heavy plant pot I suffered extreme pain and was unable to move for several hours.I went to A and E the next day and was told by a nurse practitioner that it was muscular ( even though it flagged up on my records that I had osteoporosis. After four visits with the muscle skeletal team ( who insisted it was muscular) I went private to see a back surgeon and paid for an MRI. I’d had eight compression fractures and was told that I was extremely brave in coping with the pain etc.
I eventually got referred to a Rheumatologist on the NHS and was diagnosed with severe osteoporosis and since then suffered more thoracic fractures. I’m now on Teraparatide daily injections and am in my third month of having them. As I am still in so much pain and unable to stand or walk for long I am being referred to a spinal unit for hopefully being a candidate for Vertabrae Augmentation, this hopefully will reduce my pain and fingers crossed recreate some space in my torso having lost four inches, it’s so hard to accept our changing body shape having spent all of my adult life working hard to maintain my size 12 figure. It’s so hard to accept the change and challenges that come with an ever growing waistline and protruding stomach.
Reading these blogs re affirms how common these incidents are and like the previous members I can’t help wondering that if we were treated and listened to in the early stages then subsequent fractures could have been prevented. I sincerely wish you all the very best in your recovery, staying positive certainly helps and I truly believe things will improve over time for all of us. Having access to this forum is invaluable, it’s so encouraging to hear other people’s stories and in feeling that you are not alone. Let’s all keep the faith, there’s still a good life to be had albeit a slightly different one.
Hi Bex and welcome to the community. Sorry that you’re feeling so anxious but I think it’s a feeling that we’re all familiar with. Personally, I try to remember that I’m the same person as before and more or less continue to do the things I enjoy.
Every step of the way, I’ve had to do my own research and pay to get scans etc. A GP was convinced that the fractures I had in my pubic bones were due to strained adductor muscles. My physio recommended that I saw an orthopaedic specialist. X rays didn’t show anything but an MRI showed three minor fractures. I’d skidded hard onto my back a few weeks previously but thought I’d just bruised. I returned to running then felt something ‘give.’
So often we’re sent away with a diagnosis of muscle strain and advice to take Ibuprofen that the more I read of these cases, the angrier I feel. Osteoporosis /osteopenia is so common that I’m shocked at the apparent ignorance amongst GP surgeries… or is it a money saving exercise as women of a certain age are not a priority. I better step down from my soapbox.
Corcho, you are so right. It’s such a huge problem particularly amongst women post menopause yet there seems to be little understanding or recognition of it. In defence of GP’s, I guess that given that they are just that, general practitioners and therefore they are not experts in any field including Osteoporosis but maybe that is where the problem lies. There needs to be better awareness of this condition so that GP’s too are more aware of symptoms that may just indicate that OP may be a cause of symptoms. It seems that muscular problems seem to be the ‘go to’ diagnosis without the necessary investigations that might actually reveal the real cause of the issues and enable us to get the targeted treatment needed much sooner.
So sorry you’re having all this, I too was diagnosed in March with Osteoporosis after just twisting slight. I went to an Osteopath who after checking me out and asking what I could do said I should get a scan as he couldn’t do anything for me. He guessed what had happened and even stayed in touch with me to find out the outcome.
I had a Dexa scan showing I had 2 fractures in my spine -3.2 and possibly others in a similar condition. One hip isn’t good either.
Since then I’ve fractured a chest bone which gives me pain along with my back. My shape has changed so much and I’ve put weight on due to not being able to do what I did previously
My GP was so disinterested when I said the hospital said I should be referred for bone health, absolutely nothing done until I insisted on a referral. I’m now awaiting a phone call from an Endocrinologist regarding Zoledronic infusion after being unable to take tablets.
They are very reluctant to offer this even though it’s only administered once a year for three years.
I really think they don’t like older people.
My appointment is August 19th so I’ll see what they say.
Thanks as you for your message. I’m sorry to hear that you like many others have experienced painful spine fractures.
I am not sure why DEXA scans are not more accessible. I believe they are cheaper than MRI’s. If younger people (especially menopausal women) could access them and have a warning of their bone health they could address their lifestyle and diet and possibly prevent or at least delay developing osteoporosis.
Thank you for your welcome and positive message. My summer has been ruined somewhat due to this diagnosis. When I get a scan and know what’s going on hopefully I will know whether or when I can return to my usual activities. In the meantime I’m being very cautious. Have you returned to running or any other activities you enjoy?
Yes Bex. I’m running again although I limit it to 10k. I’m also doing weight/resistance training in the gym which is something I never fancied doing but it has helped me to feel stronger and more confident. As soon as I recovered from my fractures (which I admit were pretty minor) I worked with a physio for a few sessions to get me started in a safe way. Now I go to the gym twice a week and work with a personal trainer just once a month to teach me the safe form and keep me motivated. There’s hope after diagnosis and I do understand that initial feeling… I cried like a baby.
It’s great to to see so much interest in this subject.
It appears that most of you who have replied think that MRI’s are the best way to find out about vertabral fractures and prefer them to X-rays because X-rays don’t always show all fractures. Whereas I think GPs tend to refer patients for X-ray first before MRI. I assume this is down to cost but also because MRI scans could show something that looks sinister (that actually isn’t) and lead to unnecessary invasive and risky tests and patient anxiety. So I guess this is something to consider before getting an MRI done and weighing that up against the radiation from X-rays.
For those who went private it sounds like they haven’t regretted spending the money because the MRI was very helpful. It would be interesting to know what type of MRI you had - full spine (cervical, thoracic and lumbar) or just thoracic and lumbar? Or maybe you had separate thoracic and lumbar MRI’s at different times? I’m not sure whether osteoporosis affects the cervical spine.
Your story sounds similar to mine, although my parathyroid hormone levels are high and the osteoporosis is almost certainly in good part due to this and that’s another issue. (It’s worth having these checked btw). I was totally shocked by the osteo score, as I’m fit and active. I also want to know if I’ve had fractures yet. With my low score, I should have, but I’ve not been aware of any. Like you, it would affect my decisions. My GP has said they don’t do this unless there’s a suspected fracture. I’m now thinking about paying for a scan. I’m not changing anything I do in daily life, by the way. I still cycle, carry my double bass around, run after my dog and do the impact and weight bearing exercises to quite a high degree. But like you, I do think about the risk, and I’m just a bit more careful in things like going downstairs! I slid all the way down the stairs on my back a couple of years ago. You’d think that would have broken things. But I was fully recovered in a couple of weeks.
I better step down from my soapbox. 