Osteoporosis support?

[StongerOldBones]

Hi everyone,

A couple of months ago I had a Dexa scan and got diagnosed with osteoporosis. It would be great to connect with other women to talk about osteoporosis - how we manage it, how we can avoid it, what to do about diet, medication and exercise.

I'm 63 years old and I was sent for the Dexa scans after a broken shoulder (nearly a year after!) I was surprised when the scans came back positive because the doctor said it wasn't a typical osteoporosis break. And I've fallen over hard three or four times a few years ago, no bones broken. So it's been a big shock to realise that I'm going to be managing this for the rest of my life.

So far I've been prescribed Alendronic acid each week. I've taken it twice following all the instructions about empty stomach and not eating or drinking anything but water for half an hour. Not had any side effects so far. (My sister gave me a smart bit of advice not to start taking it just before I went away on holiday in case it made me feel ill!)

The GP also prescribed vitamin D but not calcium. I'm trying to keep my calcium intake up - I've started taking a supplement and would appreciate recipe suggestions!

I still work fulltime, in a very sedentary job. I've started trying some of the exercises on the Osteoporosis Society website but it would be great to talk about other women's experience of exercise. Is anyone using a gym, or a personal trainer?

Anyone else like to share experiences or ideas or just chat about osteoporosis?

Great post OP! I had a surprise diagnosis of osteoporosis a couple of years ago following a fall and breaking a bone. I was quite indignant as it was quite a hard fall and I considered myself quite healthy but the dexa scan confirmed it. I'm now late 60's.
Looking back, my gran definitely had it and was very hunched due probably to spinal issues.
I've been on Alendronic acid and calcium since with zero side effects ( I was already taking vitamin D) I also did lots of research and improved my nutrition with daily prunes and vitamin supplement targeting bone health. I manage my diet carefully, eating lots of calcium rich foods, luckily I like dairy and oily fish.
I cut back on alcohol too and went on HRT (privately) although the jury is out on the benefits at my age. I've joined a gym and do lots of weight bearing classes, weight training etc. I also do yoga and Pilates for posture and balance. I can honestly say I have never felt better so am grateful for the diagnosis in a funny way. I've made loads of friends at the gym- I chose a nice one with lots of opportunities to pamper so I'd be more inclined to go.

I was diagnosed a couple of years back. It runs in the family and I had been on steroids partly due to breast cancer treatment and partly due to rheumatoid arthritis. I had to push hard for a dexa scan and when the results came backthe rheumatologist could not have been less interested or helpful. I haven't had anything from GP either.

I found the Royal Osteoporosis Society very helpful. There are some informative videos on their website about how the treatments work and their nurse helpline is great.

To be honest it comes fairly far down on my tediously long list of medical conditions but the main effect is that I am ultra cautious about risk of falling.
I take alendronic acid. Do see your dentist first as they will monitor you a little more. I've had some gastric problems recently but I'm keen to stick with the AA as the infusions are more of a risk of side effects.

I've looked into calcium and nutrition (the ROC nurse was helpful on nutrition). Main change at first was to increase my protein intake.
There is evidence that calcium supplements contribute to heart disease and do little to help bones. So I have been tryng to massively increase my dietary intake of calcium.

Hello @Hopefullyyours

Nice to hear from you. And very comforting to hear such positive results from your story.

I've never really been a big fan of sport or exercise(!) and I know that needs to change. I swim every week but that's no help. I tried jogging a few years ago and I quite enjoyed it but that's how I had those falls so I stopped. I do like walking and I can do short hill walks locally.

I got the diagnosis just before the last physio appointment for my shoulder so I asked the physio about it and she gave me some exercises I can do at home, like wall pushups and leg lifts, and some weights. She also said she will refer me for some sessions at my local gym. I haven't heard anything yet (not surprising with Xmas) but if I don't hear back I will get in touch with the gym myself and see if I can book myself a few private sessions with someone who knows about osteoporosis.

I also like oily fish but I worry about bringing sardine sandwiches to work :-) I like milk and youghurt but have to limit cheese.

Interesting that you've tried HRT, I had a fairly late menopause (mid fifties) so I never tried it.

Do you do a gym class for the weights?

I'm having a dexa scan in the next couple of weeks. I have a strong family history and other risk factors, I'm only 41. Is a dexa scan just to diagnosis osteoporosis or can it see other things

Hi Stronger!
I lift a few weights in the gym but find that boring and prefer my aerobic dance classes twice a week which include weights. I have never been one for exercise but have discovered the key is to find something you love. I recently retired from full time work so have lots of time on my hands

The best thing for bones is impact exercise. So walking is better than swimming and dance is good. I walk a lot and do a dance class, my best intentions have been hampered by a slipped disc though.
I never took HRT because of the risk of breast cancer. I knew nothing about it's protective effect on the bones(though it didn't help my mother). I then got BC anyway and they won't give HRT to anyone with a cancer history.

Thanks @Pifful I'm sorry about your health problems and the rheumatologist doesn't seem to care. I haven't talked to my GP at all(!) just the practice nurse for a blood test and pharmacist (and the physiotherapist) I do worry more about falling now, especially as I seem to trip over very easily. Trying to keep going though. I use walking poles.

I have some of the leaflets from the osteoporosis society. Trying some of their exercise videos too.

Interesting video you linked about calcium supplements and heart disease and Vit K.

I'm around your age and was diagnosed a few years back via a Dexa scan. I decided not to take the alendronic acid and Calcium/vit D combo to see if I could improve matters by exercise and diet alone. I had a repeat scan recently and my numbers very slightly improved. The exercise was Pilates and walking so nothing drastic. My thinking was that you're only supposed to take alendronic for five years at a time so I thought I'd save it till I'm too old to exercise at the intensity needed.

I always seemed to fall really easily too and put it down to clumsiness, but my Pilates teacher says as we age, our back muscles need exercise to help keep us up upright as we tend to stoop with age. My posture has certainly improved and I haven't fallen over for ages. The dance classes help with coordination and yoga and Pilates promote good balance. Luckily I enjoy the classes. think the stats are that lots of people will have osteoporosis in later life so the key is to maintain bone health as much as possible and work on fall prevention. ROS are a great source of support and will give you reliable information because like yours, my GP was pretty unhelpful.

Why ARE they so reluctant about offering DEXA scans? It's not as though it's a huge radiation dose or anything.

I found out I've got coeliac disease a few years ago, and the coeliac clinic told me their procedure was to check bone density a year after diagnosis (since coeliacs can have vitamin and mineral deficiencies, sometimes resulting in bone issues). Unfortunately, I had to move area before the scan happened, and in the new place there was no coeliac clinic — instead I had to lobby my GP hard for a scan, which was eventually VERY reluctantly granted.

I don't have osteoporosis, but apparently do have osteopenia, which wasn't something I'd really expected to hear in my thirties — and TBH the doctors were about as helpful as it sounds like your doctors were. All that happened was that a short text message (that read like it was auto-generated) arrived, telling me I have osteopenia of the hip, with a link to the osteoporosis charity you mentioned. No exact test result numbers (not even through my online GP or hospital records). No offer to discuss. Absolutely nothing. Just, basically, "Yeah your bones are dodgy. Maybe look at this website if you want."

Thankfully, the charity nurse helpline you mentioned really IS good, and a truly lovely and obviously very knowledgeable nurse was able to talk me through what it actually meant, and help me feel better and better-informed.

I know I probably don't belong on this thread really, as osteopenia doesn't come with the same risks and doesn't merit drug treatment, and I'll clear off after this, but I just wanted to sympathise with how hard you've found it to get assessment and medical input for osteoporosis. I feel like I've had a glimpse of how this stuff is maybe not taken as seriously as it should be. It almost seems like the NHS just shrugs sometimes and goes "female? crappy bones? yeah that happens sometimes, but meh, whaddayagonnado, eh?"

Hi @Raxacoricofallapatorian You definitely belong here if you want to be! Hearing about osteopenia in your 30s must have been scary. I have no idea if I had it or not when I was younger and I guess one worry is it could go on to develop into osteoporosis.

I'm taking the drugs but diet and exercise and diet must matter too. I don't get another scan for 5 years so there's no real way of knowing what's helping or not. We all want to stay strong - I want to enjoy my retirement when I get to it!

One of the things that bugs me is that exercise that's good for some things is bad for others, running is meant to be good for bones but people a bit older than me are giving up running because of joint damage.

Yes, balancing all the different risks and benefits is a bit of a nightmare, and only seems to get harder with every passing year and every new diagnosis. I thought I was doing myself a world of good when I took up running, until it went wrong, and the sports physio scolded me for ever having taken up running with hypermobile knees that I had no idea I had 🤣

5 years is ages! Mine was just over three years ago, and I've got another scan next week — not on any particular schedule, but because my gastro consultant requested it. I suppose it's done differently depending on the underlying reasons, maybe? I suppose they must've worked out some kind of optimal monitoring (or optimal for the system, maybe…), but it's a long long time for you to wait to find out if what you're doing is working.

Edit: there's also balancing medications on top of everything else, which is a pain — e.g. my doctor told me to take vitamin D as I was in the deficient range, then urgently contacted me to tell me not to, because of a hypercalcaemia risk when combined with a medication I have to take for something else. Except I was already taking a vitamin D supplement because of the osteopenia 😐🤣

I was diagnosed with severe osteoporosis at 41 after having a baby. A few things to add to PP that might help:

A physiotherapist said to me 'your bones aren't crumbling, they are real, growing, living tissue' which made a huge difference to my mindset and how I saw myself after diagnosis.

You can make huge improvements taking your current treatment.

Get into the habit of doing actions like dancing and stamping your feet when doing normal functional things- I have two young children so I don't go to a gym, but I do a lot of walking with the buggy and stamping my feet for impact, jumping up and down making dinner etc!

Always protect your back - not just lifting correctly but avoid pushing against things (like the push/pull action you would use to wedge a suitcase into a tight space). Spinal compression fractures are a risk with osteoporosis diagnosis, not just from falling.

My bone density is now back to within normal range :)

Great thread. Thank you OP for starting it.

I was in a similar position- diagnosed a few months ago very unexpectedly (I'm only mid fifties).

I had lots of good advice on my thread here which might be useful:

www.mumsnet.com/Talk/menopause/4908322-osteoporosis-diagnosis-please-help

dancing and stamping your feet
@iammother I was told about this by the ROS nurse. Heel drops are an exercise you can do any time. I aim for 50 at a time.

The exercise was Pilates and walking so nothing drastic.
@spiggydit I do pilates and while it's great for strength and balence it doesn't do anything for bones, you need impact. Something that jars your skeleton (not easy with back problems).

Why ARE they so reluctant about offering DEXA scans? It's not as though it's a huge radiation dose or anything.
@Raxacoricofallapatorian It was timing. I had breast cancer treatment in 2019 which caused a flare of RA requiring steroids in early 2020. It was the early days of pandemic and hospitals were cancelling everything.

@StongerOldBones I was originally told 5 years before another scan and my GP wouldn't repeat it when I asked last year. However I saw my rheumatologist recently and he was happy to arrange another. I have it later this month. It will actually be a bit nerve wracking to see if it's got worse as my T scores were T score in spine was -3.9 and femoral neck was -2.9.

The ROS nurse told me that the alendronic acid slows bone loss rather than improves it. Some bone loss with aging is normal and if a repeat scan shows little or no deterioration it's doing it's job.

@Pifful There are several academic studies that have shown Pilates improves bone density as well as a number of related benefits for those with osteoporosis.

Interesting to hear about pilates, as that has tempted me for a while, and I currently do tai chi. I was diagnosed with osteoporosis 2 years ago after a wrist and hand fracture, which is probably quite late as I have been fracturing for a while. I'm also coeliac and lactose intolerant. I have a fairly active job, so that helps.

@CrepuscularCritter I've done pilates for many years, long before I was diagnosed with OP. There are a couple of moves I now avoid to protect my spine but otherwise I find it beneficial all round. Not convinced it does anything for bones directly it certainly helps the muscles that support your bones and most of all it's good for balence so helps prevent falls. If you do Tai Chi I think you may enjoy pilates. It does vary depending on the teacher. The first time I tried it was probably 30 years ago and loathed it with a passion. Then I took it up again in a different class 10 years ago and really enjoyed it. I hate yoga so don't be put off if you don't like yoga. There are similarities but no "woo".

Hi @rainraingoaaay As far as I know the Dexa scan is just for bone density so it either says you're OK, or you have low bone density (osteopenia) or very low density (osteoporosis) They did two scans, one on my lower back and one on my upper back, and one was osteopenia and the other osteoporosis (I forget which was which blush)

Hope you get good results for yours.

Hi @JenaWren I'm sorry I missed seeing your thread before I started mine - you have some really good information on it! Thankyou for the heads-up.

How are you doing now?

It's always good to have a thread of your own for support. Mine was a while ago now.

I'm getting my head round things a bit better - it took me a while to process everything and work out what the best course of action would be.

Now I'm taking the alendronate as advised. I've also started HRT for other post meno symptoms and benefits. I'm also building up my bone strengthening exercise and making sure I get enough Vitamin D and calcium.

My goal is for all that to become routine so I can forget about it until my next bone scan.

On good days I'm grateful for the opportunity to do as much as I can to stay healthy and strong.

On bad days I miss the me of 6 months ago who didn't have to deal with it all.

Fortunately, there aren't many bad days anymore and I'm surprisingly ok.

@Pifful It's good to know that different teachers may be better suited for me trying pilates. I will have look to see what is available locally.

I have it. Took AA for 3 years but stopped of own accord. Didn’t agree with me. I take Vit D and calcium plus on hrt. I do Pilates, weight training and walking, I’m 58 and pretty fit.

last time I had a follow up scan I’d improved my bone density. So can be done.

I’ve read anacdotal evidence from women on a menopause Fb group where hrt has reversed their osteoporosis. Also read good things about it on Estrogen Matters.

Glad you're doing OK @JenaWren I'm still very much getting my head round it.

Silly thing - I want to do heel drops but I live in a first floor flat and I do worry about the downstairs neighbours!