Hi - I've just signed up with the site following an osteoporosis diagnosis. It was one of those 'accidental' diagnoses. I had a heavy fall onto my back at the start of January and x-rays showed a wrist fracture and a vertebral fracture. Because I'm 62 I was offered a DEXA scan to see if I had any bone thinning which may have contributed. I took it up, thinking I would be fine, and it's come back with a T score of -4.2 for my lumbar spine and -2.2 for my hip.
I'm so shocked. Until my ridiculous fall, I've been fit, healthy, active, had no fractures and never had to restrict what I do (I know I'm very fortunate in this). And now I'm in complete limbo, worrying what I should stop doing (pilates, dog walking, running, you name it) and feeling like I'm old before my time and every pain is a fracture (even though I'm not in pain aside from some occasional backache). I didn't have HRT when I was going through menopause - the GP persuaded me not to - and I wish I had but that ship has sailed now, I think. I'm due to start on Alendrolone this week and, despite the side effects people talk about, I think I have to give it a go.
That's quite the brain dump. How has anyone else managed with a shock diagnosis - thinking you're fit and able and then maybe you're not? Do you keep going with the exercise and activity or scale it back until the drugs kick in?
Thanks for listening/reading!
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TerriersAll
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Yes, I think most of us probably get a bit of a shock when we discover we have osteoporisis. It’s just not the sort of news anyone wants to hear.
I fractured my wrist in January 2020 - just before Covid which made life very difficult. At that point I had to stop my Pilates until the plaster came off but as soon as that happened I saw my Pilates teacher who is also a physiotherapist to get the go ahead to start again, I did three one hour Pilates sessions every week. I have always walked a lot so that wasn’t a problem.
I fractured my sacrum a year later - another freak fall - that was incredibly painful and walking was very difficult - I thought I’d end up having to use a mobility scooter for the rest of my life but I kept going and fortunately things improved, I already had Nordic walking poles that I used and they were very good. I kept going with my Pilates sessions though.
The only exercise I don’t do now is cycling, I used to do a lot of cycling and I used to fall off regularly which was one of the reasons I was surprised to discover I had osteoporosis. I thought because I’d always been fine when I feel off my bike my bones were fine.
I would do whatever exercise you are used to doing and want to do and if anything causes pain don’t do it. Watch how you lift or carry things. Have a look on here there is a lot of information about exercise and moving theros.org.uk/information-a...
Hi TerriersAll. Just like you I was very active running at least 10 km twice a week, long distance hiking etc. It was whilst I was hiking Hadrian's Wall that I skidded and landed on my back. I felt ok after a couple of weeks so went running again but obviously I had some hairline fractures which running made worse. Thankfully the fractures were small enough to not show up on Xray, but I had to fork out for a private MRI to get a diagnosis as I just knew it was more than an adductor strain (gp diagnosis) Like you, following a Dexa scan, I was shocked to discover that I have osteopenia. My results are not as bad as yours, but because I've had fractures, my risk is considered higher. I dithered for months about whether or not to take Alendronite. To cut a long story short, I've decided to take it for 3 years then get another scan, then hopefully take a 'drug holiday.'I've recovered well from the fractures and in the New Year, joined a local gym where I work with weights and, joy of joys, run on the treadmill. I go hell for leather on the treadmill and run 5km twice a week. It feels great to get back to some form of running again and it's given me the confidence to carry on doing something I love. The sports centre I go to, also has a hockey pitch with that special soft surface, like children's playgrounds. I'll start to run outside on that soon to reduce the impact of running on concrete.
I'm going on a bit here but it's my enthusiasm for being active! Don't lose hope. If I was to offer any advice it would be safer to start getting active again under the guidance of a good physio and follow a personalised plan. Re Alendronite I haven't had any side effects yet after 2 months. I'm following a healthy diet and take vit d+vit k supplements. Good luck, take care, do your research and find what works for you. x
Yes it is a shock, I also went from being an active fit and healthy person to a sofa slug in the course of the few seconds it took for me to fall downstairs. That's 5 years ago, every one is different but I couldn't possibly run, I would ask your Dr if you could see a physio, have you seen the consultant yet?
The physios wouldn't let me do anything other than hydro therapy but I'm in the peculiar position of having fractures that just will not heal. And unfortunately, surgically there's nothing they can do.
As you say it's a brain dump, that's a jolly good way to describe it.
I've had therapy with the Osteoporosis psychologist that has been immensely helpful to me. Entertaining friends and family and travelling was our life and it's been a massive lifestyle change for both myself and my husband.
She gave me the tools so that I can learn what to leave, how to decide what things matter most in life, What's the worst thing that can happen if you don't do xxx and how to concentrate on the things that matter.
So I don't always make the bed, and the world didn't stop turning!!😅
I've now got a cleaner, it's nothing to be ashamed of, I do realise that not everyone is in the position to have a cleaner etc, but if you can have one it's so much easier. We don't spend the money on trips, days out, now so ...
It's not an easy journey, that's for sure! But this is such an empathetic community you know if you're down someone will pick you up
I didn't talk about the mental struggles until I'd seen the psychiatrist, she helped me to open up to family and friends and I've found it easier to accept. I'd literally built a wall round me and retired into it, it's hard to explain. Yes I can manage, I'm fine thank you but no thank you - you get the gist!!
Now if folk offer to make us a dinner or do anything to help I accept, I've found it's a lot harder to receive help than to offer it!!
I've learned, or hope I'm learning to accept help graciously rather than grudgingly. It's a lot to learn and deal with at the same time. Sorry for the long spiel!!
Great reply and advice CinnamonRose and thanks for having the strength to show your vulnerability. I remember sobbing when my MRI showed an osteoporotic pattern of fractures, believing that my life was over. The subsequent Dexa wasn't too bad and, although I know it doesn't give the full picture I realised my hard fall was a cloud with a silver lining... it gave me the chance to act now. Let's all hope for new drugs and more funding for this condition. Governments should realise to invest more now will save the NHS from us aging baby boomers!
My advice, as always, is get to see a rheumatologist for best advice. They may recommend Teriparatide first as my consultant did. Also there is a similar drug to alendronic acid called Zoledronic acid which is by annual infusion which avoids any gastro impact. Many people cannot tolerate the tablets.
I had a Zoledronic acid infusion first one nearly 5 months ago and since then I have struggled with constipation. I have ibs but it was calm before the infusion. I was told it would bypass the stomach but since then they have said it is on the uncommon side effect list. I have to wait for it to wear off now. I took Alendrolic acid tablets and had the same problem with them. Many people are fine with the infusion but there are a few who can have stomach problems with it. It is so important to look after your bones and like I say many people are absolutely fine with it.
It might be worth considering getting an Echolight scan. I had a Dexa scan last December and the scores were spine -4.2 and hip -1.2. The Echolight scan showed spine -1.9 and hip -2.7! I was about to start on medication but am now managing with more calcium in diet and weight training. It has been a big wake-up call, though! I hope your Dexa scores prove to be incorrect too.
Hello Happy Jumper, thank you for your post. I am wondering what is an Echolight scan as I have not heard of such a thing before and am reliant upon Dexa scores to inform future treatment. Thank you.
Hello Ketchikan. I went to Mayfair Health in London (mayfairhealth.co.uk/service... but I believe there are other places in the UK where you can have this scan. It cost £200. If you Google it you will learn more about the test. It isn't available on the NHS yet.
Thank you so much for all these messages. And while it’s reassuring to know I’m not alone, I’m so sorry to read of how this blasted condition is hurting so many people. The next step for me is to try the meds and get some more insight from the medics - trying to remember that up until my diagnosis I didn’t feel the need to act as though I was made of glass. I’ll keep you posted. Take care.
Hi TerriersAll. From info gathered on this forum the more 'jarring' exercise the better for bones. It stimulates the osteocytes to produce new bone apparently!! I've read that heel drops help so I do those daily - was doing 10 2 or 3 times but I've upped that to 50. Until a month ago I was playing tennis but have given up as I've arthritis in my neck, knee and thumbs which just made it difficult. I'm 76 so have had a good innings. Pickleball has lessened the sadness of losing tennis and is less strenuous. It's so frustrating isn't it?
I had one of those unexpected falls dog walking, talking and not concentrating. Result broken pelvis and wrist and 3 weeks away from moving from Surrey to Devon on my own! It took me a year to get a DEXA here but was then diagnosed with the dreaded O. I tried Alendronic and Risedronate each with disastrous results. I had my first infusion a year ago of Zolendronic Acid and am due my second which I am having to chase up with the NHS. I did not expect to be running around trying to get my second infusion. I thought it would be handed to me on a plate! I started weights in a wonderful class of like minded 60/70 year olds and we have enormous fun building up our bone strength. I am as fit as I have ever been now and I have just turned 71. I also do pilates, yoga and aqua when the outdoor pool opens.
Hi keep positive thinking. There's a lot of people in similar situations here, they are really good in giving advice and support. Any questions or worries, just come to us and we'll help. I've only been on the site a short while but had so much support already. Take care
Hi TerriersAllThere's definitely a theme here, how shocking and scary the diagnosis is. I had mine last summer -3.1 hip and -4.4 lumbar (I was 70 and active). ROS has loads of information and fact sheets. I started doing a lot of fact finding which resulted in me going for a REMS (Echolight) scan. It has to be done privately but it gave me such a boost re bone strength. I've stopped AA weekly effervescent tablet and am concentrating on exercise and diet, slightly hampered by dodgy hips. I spoke to my GP and he was interested and positive about my decision which was great. I told him that I've booked a further REMS in 2026 so we can review the situation then. All the very best for your journey forwards, I think the more info you can get the better and I've found loads on here.
The ship hasn’t sailed for you on HRT. I discovered I had osteoporosis last year when I was 62 (no fractures). My DEXA results were spine -3.8 and hip -2. After a great deal of research into the drugs etc, I found a factsheet on the ROS website about HRT saying it’s as effective as bisphosphonates - see page 2 right hand side strwebprdmedia.blob.core.wi...
Armed with a printout of the factsheet, my GP agreed that HRT was a suitable treatment as I still had some menopausal symptoms. No arguments nor anything about me being too old (I was 63 a month later). I’ve no idea if it will help my bones but my hot flushes have gone and it’s really calmed me down from my highly anxious state. I’m on the commonly prescribed Evorel Conti patches which are bio identical hormones which although not risk-free, don’t carry the same risks as the old HRT drugs made from horses urine.
Also, I agree with the other comment someone made about the Echolight REMS scan. Google a company called Osteoscan, run by Nick Birch. The REMS is an ultrasound scan. He has a base in Northants I think but travels around the country with his kit. You get a scan and a long appointment time where he gives advice, not cheap but worth it. Interestingly he said my DEXA couldn’t be right because of the discordance between the results. The REMS results were -2.9 spine and hips (both tested) were -3 and -3.1. The other thing about REMS is it shows your bone strength, something the DEXA doesn’t do.
There is a large discordance between your spine and hip so that would raise a ❓ in my mind regarding the accuracy of the Dexa. I broke my shoulder falling hard whilst walking the dogs and was diagnosed with Osteoporosis. I am very active ( walking and dancing) so was skeptical regarding the Dexa result and reluctant to take the medication without verifying the results. I had a Rems scan which confirmed the osteoporosis however Rems also measures bone strength and in my case my bones are strong.My breakage was just a freak accident and as I am petite with a low BMI my bones do not need to have the density of a heavier person . I declined the meds and continue to enjoy my life to the fullest but make sure to eat a healthy diet and supplement with vit D .
There is such a big difference in your two figures that I would want to get another scan, though you may have to pay for it. I have read that if there is more than 1 difference between hip and spine one result will be wrong as osteoporosis is a systemic (whole body) illness
Thanks again folks. The consultant seems to think it might be the hip score that is too low. Either way though, I definitely think the REMS is worth looking into. I’ve not had other fractures (as far as I know) and my accident was a slam dunk worthy of WWE. Let’s see…
I know exactly how you feel. I had a cycling accident and ended up with a fractured vertebrae. Sent for a Dexa scan about six months later. Didn’t hear anything from GP so presumed results were okay. Recent GP visit almost twelve months later and when GP looking at my records found that I had osteoporosis and should have started treatment. I was very shocked so much so I forgot to ask about the actual scores. I am now on alondrelone and not having symptoms from taking it but only had it for a month. I am 67 years old and was pretty fit but healing from the fracture was a slow process. I do Pilates and I am going to start some weight training to build muscle and bone but I also have a prolapse so worried about weights impact on that. Getting older is very demoralising.
I know what you mean. I had to nag the gp into getting my back looked at after my fall, then ended up paying for a private scan as the nhs had such long delays.
I found talking to the nurse on the ROS helpline very helpful re what exercise I should and shouldn’t do.
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L1 vertebral compression fracture 
Don’t give up be persistent !!
Recently diagnosed and have questions 
Any advice would be greatly appreciated!!
33% radius t score 4.5 
