Osteoporosis

I was diagnosed with osteoporosis about 8/9 years ago (maybe more ) I ve lost height but apparently that naturally happens anyway but in a lesser way I m told I have it in my lower spine and hip but never had any hip pain and can still touch my toes with straight legs and sit cross legged without any pain or stiffness I ve had about 6 infusions over these years which have only helped about 9% so I m not sure whether to continue I am discussing it with the hospital in a telephone consultation in June
I do get back pain, but I volunteer 20 hours a week (on my feet the whole time) I have an allotment do lots of gardening I swim, walk and get on with stuff I m 80 maybe if you are a lot younger it is more scary
I personally try to forget it most of the time I just feel I could have so much worse things
I m not being over positive just want to show it’s not necessarily anything to be overly scared of ( I m much more scared or dementia)

This has been talked about often on here and I have seen there are other posters who lead a fairly ok life with it

On denosumab injections 6 monthly. Have not had dexa for years. I have asked and been told no point. My cervical spine is a problem ... pain and numbness in R arm. Can't engender any interest from anyone except physio. I just try not to letbit get me down.

I'm osteoporotic too. Have been on Alendronic acid for years with breaks inbetween. Doesn't seem to have been much of an improvement so now changing to Denosumab six monthly from May. The consultant told me I had a 50% chance of hip fracture without treatment which is scary. Like BluBelle I'm 80 and lead a busy, active life and try and put it to the back of my mind.

Don’t be too upset lots of us here with it. I’m on calcichewD and raloxifen I walk a lot. Volunteer with small children. Try to do exercises and recently bought a skipping rope. My skills are appalling.
Years of other meds including on/ off steroids probably caused mine but a few years with above regimen and I’m hopeful.

I was diagnosed with Osteoporosis early in 2019 when I had a stress fracture to my spine following a fall, from standing. Never had a Dexa scan, anytime I have asked told 'No Point' as 'anyone of my age (78 then), with a stress fracture undoubtedly has Osteoporosis.
Been on Alendronic Acid weekly since then, and Adcal twice a day. Thought that would end after five years, but the was told that 'at my age' I should have it for seven years.

Yes, I have lost height, have very limited mobility - so use a mobility scooter or electric wheelchair when I am out and about. Still live totally independently and have a very active social life.

Like Bluebelle the thought and idea of any sort of Dementia scares me, but osteoporosis in old age is perfectly copable with (well, it is for me).

My osteoporosis was discovered by chance, when I was called in for a UK Biobank re-survey.

That was 3 years ago and I have yet to see a doctor. After another DXA scan, a doctor rang me and said that I had osteoporosis and they would put me on Alendronic, which they did - and thats it. It was sign off and you are on your own.

Recently after a muddle of misdiagnoses, including a misdiagnosed stroke, I have finally been diagnosed with cervical spondylosis, which is exactly the same problem that Luckygirl3 has. I have it in both arms.

Apart for the mild twinges in my arms, I otherwise have no symptoms. like others I have always been, and remain physically active, have a healthy diet.

I do Tai Chi, and I would recommend it to anyone, older and wanting to keep fit, you do gentle exercises that do not put a strain on any part of your body, but are remarkably thorough in keeping you fit.

Like Bluebelle and Kiwiqueen123 mst of the time I forget I have got it. The only time I think about it are when I take my weekly alendronic acid and on threads like this.

My mum was on alendronic acid for years without a break at the time when you took it for life. Her spine was still 'shot to pieces' when she died. She was, and I am, coeliac. Perhaps it doesn't work for coeliacs. I've got severe osteoporosis in my spine and 1 hip and osteopenia in my other hip. I took Fosamax for a few years but gave it up as it wasn't working. I declined the infusion - mainly because the appointment never arrived and I changed my mind. I have a vibration plate and use it a lot. Hopefully it will work....

It’s never your fault . This is devastating news for you, I’m so sorry. We women are not looked after well enough by the medical establishment I fear. However there are many things you can do and getting to grips with the fear is one of them. Pursue your medical options and treatments . Bisophosphonates of some description will reduce spinal fracture risk by 75%. They are not nice to take and can have side effects but at present the balance of risk is that you should take them as spinal fracture or compression is worse . Ask to see or pay to see a specialist osteoporosis physiotherapist so you can have the right level of weight bearing exercises . Muscle will protect your spine. Keep as active as you can. Eat plenty of protein and calcium. Look up the impact of taking Vit K2.
Seek support and advice from the Royal Osteoporosis Society - their helpline is wonderful and they’ve got a great web site with lots of information .
I am in the same situation as you and was devastated by my own diagnosis but I refuse to let it define and dominate my life . One last thing - have a full dental review before you launch into any treatment as dental health is really important and if you were thinking of ever having g implants do it now before you start on any bisophosphonates or soon after . Good luck .

I have an unexplained fracture and have to go for a Dexa scan, goodness knows how long the waiting list is here.
Other joints are painful too but getting any information from the surgery about what to do in the meantime was quite difficult.

Thank you marymary62, I've been taking vitamin D since this was diagnosed but had not heard of vitamin K.

The Royal Osteoporosis society is wonderful
I have been diagnosed and had a few questions
Knowledgeable nurses on phone to answer any concerns
Up to 50% of over 50s have it so its one of those things we live with

I'd had two fractures before this but no-one ever picked up on it. Last time I fractured ribs but couldn't even get past the receptionist at the surgery, so it didn't get reported.

Milliedog

My mum was on alendronic acid for years without a break at the time when you took it for life. Her spine was still 'shot to pieces' when she died. She was, and I am, coeliac. Perhaps it doesn't work for coeliacs. I've got severe osteoporosis in my spine and 1 hip and osteopenia in my other hip. I took Fosamax for a few years but gave it up as it wasn't working. I declined the infusion - mainly because the appointment never arrived and I changed my mind. I have a vibration plate and use it a lot. Hopefully it will work....

My mother was also coeliac and had broken her wrist several times from minor falls over the years. Eventually she was found to have osteoporosis and was on trials for osteoporosis drugs at Harwell for some years (I don't know the name, but it was the one where you had to stay upright for some time after you'd taken it).
Because she was on the trial she had regular bone scans and I understook that the drugs did halt the progress of the disease, though she had shrunk significantly by the time she died she never developed any other symptoms.

cc

It’s alendronic acid that you have to remain upright for half an hour after taking it.

I truly don’t find it heartbreaking or devastating MaryMary
I don’t think it’s changed my life much at all I m as active as anyone and more than many much younger without it and although I be had falls I ve not broken anything since I was young and in my thirties
There are so many much worse things to have
Rowantree stay active eat well and forget about it We all have aches and pains in various places as we get older

I’m 62. Osteoporosis has been identified! My Mum has had it for approx 10yrs. She has a very curved spine and this impacts her breathing and her internal organs. I went to the GP for a pain in my left upper arm and whilst checking into that I requested a scan. My main exercise is walking daily. I would join a gym, but so expensive. I am worried that I will have the same problems as my Mum. Haven’t started any medication as yet. Does anyone here a have any suggestions for alternatives to pharmaceuticals?

I fractured my spine on 2 nd January but thought I had just pulled a muscle as I had been coughing a lot. After an x ray and a Dexa bone scan I was told I have osteopenia and given alendronic acid tablets. I’ve been taking them for three weeks now with no apparent side effects. My back aches if I stand or walk for more than a few minutes. I’ve found that aquarobics is the only pain free exercise I can do. I’ve been taking strong co codamel most days but their effectiveness seems to have diminished. I’ve always been a keen gardener but now I can’t do any. This has all been a complete shock and I am worried that the back pain is chronic. I am going to a physiotherapist this week. I don’t believe there is any fault involved - I just wish there were more checks on our bones as we get older.

My mum was part of a long term clinical trial monitoring bone density in a large cohort of women. Designed to understand the progress of this women people age. I think Mum went for a DEXA scan in Oxford every three years for about 10 years. Then they lost their funding.
Such a missed opportunity to learn more about progress of osteoporosis. My mum has never broken anything (now 91). So they would’ve had no data on her without the trial. Osteoporosis was not taken into making clinical judgments about HRT for women like me (now 70). It’s another example of how research into women’s health is neglected. We are supposed to accept on this as a natural part of aging.

I had severe back pain 3 years ago and eventually after paying for an X-ray was diagnosed with osteoporosis in my spine, kyphosis and excessive lordosis. I had 2 spinal fractures and lost 10cm in height. I had a Dexa scan and was put on Alendronic acid tablets (Binosto). I’ve been taking them for 3 years with no ill effects. I have moderate pain in my back all the time. I also have arthritis and have had both hips replaced in the last 18 months. I haven’t actually seen my doctor since diagnosis. I walk with walking sticks or a rollator and get about as best I can. I walk most days and do exercises five days a week.
I don’t think enough publicity is given to osteoporosis, it’s not just an old lady problem! Men get it too as well as younger women. The Royal Osteoporosis Society is brilliant, there’s a lot of information on their website.

With due respect, I think that a lot of publicity is given to osteoporosis. The Queen is patron of the Royal Osteoporosis Society as her mother had it. The internet is awash with information. Personally I did not get on with the ROS site. This is no criticism of it, but it is very much aimed at people like those MaryMary knows who are scared or devastated, and personally I found its very comforting soothing, don't be scared style persona, very irritating, because I was not bothered a bit about the diagnosis. and constantly being reassured about something I was not worried about grates after a while.

While my diagnosis was a surprise, like Bluebelle, the disease causes me no problems at all. I have just spent 2 hours in the garden bending and stretching and weeding, and pruning, then came in for a rest because I was tired, no aches and pains at all.

M0nica good that your osteoporosis causes you no problems, out of 20 or so members of a local support group, only 2 of us have continuing pain/discomfort from their osteoporosis. So we’re very much in the minority! I have to say I wasn’t heartbroken or devastated by my diagnosis- annoyed because I thought I’d always done plenty of exercise and eaten a sensible diet, plenty of calcium etc.
I still do my own housework and as much gardening as I can, hope to do more when the weather improves. Having had both hips replaced, I’m a bit wary of getting onto my knees to do the weeding, but I will, when I can work out how to get up again!

RowanTree, I understand your reaction. I', 63 and was diagnosed last fall that my osteopenia had progressed to osteoporosis. It's not at all nice to hear that there is something chronically wrong with your body, no matter your age.

I worked as a clerical worker my whole career, and have a smaller bone structure along with early menopause and no hrt. These are all factors, so I knew at some point I would be affected.

I do my best to stay active, eat properly, take vitamin D and now have a whole body vibration machine as well as a weights routine.

They say around 10% of women over 60, and 20% of women over 70 will have osteoporosis, so you have lots of others to lean on. I hope that you have a good talk with your doctor, and on-line research like the Osteoporosis Society to gather as much information as you can to make the best decisions for yourself.

Last summer at the age of 77 I broke my foot and once I had recovered I was referred for a DEXA scan. I understand that this is routine for anyone over 65 having a fracture. Thankfully, my scan was clear with no evidence of osteoporosis.
I have also been told that when taking vitamin D supplements you should also take vitamin K2 as this is needed to direct calcium to the bones.

Autumnrose

Last summer at the age of 77 I broke my foot and once I had recovered I was referred for a DEXA scan. I understand that this is routine for anyone over 65 having a fracture. Thankfully, my scan was clear with no evidence of osteoporosis.
I have also been told that when taking vitamin D supplements you should also take vitamin K2 as this is needed to direct calcium to the bones.

I broke my ankle when I was 71, my ribs a little time later and no-one ever suggested a Dexa scan. Now a pelvic fracture.