Just diagnosed with osteoporosis. Please help as feeling overwhelmed

[4Tornot4T]

Hello, I've just been diagnosed with osteoporosis in my lower spine L1-L2 and am feeling absolutely devastated and very tearful. My T score was -3.9 which seems to be very bad. The other areas seem to be OK although I have osteopenia in my hips. Osteoporosis runs in my family and I had an early menopause so was at risk but I still feel in shock. I'm 58 now and lead a reasonably healthy lifestyle. If anyone can give me any advice I'd be so grateful. I previously posted in general health but another poster suggested menopause would be a better place. Thanks in advance.

I hope you are ok and you will be in shock. Have they offered you any medications, hormones to help with this. Once you start treatment you will feel better and it sinks it and you can manage it. Take care of yourself and am sure other posters will have more useful advice.

I had it at 49, after starting menopause at 42.

I lead a reasonably active lifestyle, what with being a Head Gardener at a city farm, but was in so much pain by the end of the day i couldn't climb the stairs.

I had been on HRT at that point for a few weeks, as I'd proven to my doctor how little sleep in was getting, and how many steps in was doing to show that this wasn't just me being whingey.

I was also prescribed calcium tablets, which i took but in the past blood tests it didn't show my calcium levels as down so I'm didn't take those for long.

I did more weights, I tried to think of every activity to see where I could build strength, and what with the HRT and eating calcium rich foods, by the next scan my osteroprosis had done done, well the bone density had gone up.

I am still petrified of jumping though, I can't forget the pain I was in when I finally got the doctor to relent and give me the HRT.

Thank you for replying. It sounds awful and I'm sorry for what you're going through.
Did HRT improve your bones? My GP thought I'd need something stronger as it was more serious but I'll try anything. My calcium levels are OK but my vitamin D is low so not sure what the best option is.
I'm terrified though as -3.9 sounds terrible and is class 4 osteoporosis.

Hey there, hope that your doctors are able to help you through this.
I think understanding what is going on medically is really important, so if you have the time take a look at this, or do your own research, I just recommend this video because I like this doctors accent.

Hi AlisonDonut. I've just seen that your bone density went up. That's fantastic. You must be relieved. Do you mind me asking what your T score was? My GP has just talked about stopping mine getting worse and said its unlikely to improve as I'm post menopausal but I'd like to try if it's possible.

First hugs, must be a huge shock. Second, I really recommend Margaret Martin (melioguide) who has books and various online resources on movement for osteoporosis including strength and mobility programmes tailored to your activity level and fracture risk. She also has tips on how to move in a way that protects your spine, which includes various movements that you should avoid (no crunches or plough poses!). There are also some great resources online including the Royal Osteoporosis Society. It is possible to increase bone density with focussed work - the LIFTMOR study is quite inspiring!

There are various medications and it's worth reading up on them and understanding their limitations as there are some that you can only take for a certain period of time. I've not looked into this in detail as I have osteopenia so am all about the lifestyle changes.

If you can get sufficient calcium from your diet I understand that is better than taking supplements because it's difficult to absorb a big dose all in one go - Sources include green veg and oranges, not just dairy. I monitor my dietary intake through food logging and take a small dose of calcium as a top up if I end up having less than usual. Also look into vitamin K2, D3 and magnesium which support bone growth.

There are some interesting podcasts out there which are worth a listen though as ever there are a lot of crank theories out there - some weird stuff about alkaline diets that doesn't seem supported by the evidence. Anyway, good luck!

Thanks unablemitigate. I'll take a look at it. My GP was helpful although rather blunt in the delivery but I guess there's no way to soften the news. I'm trying to do my own research to understand what's happening and did ring the Osteoporosis Societ helpline who were fantastic.

Thanks UnaOfStormhold. Your post is really encouraging. Thank you. I just can't stop crying at the moment but hopefully it will sink in and I'll be able to be more focused on what to do.
I have had lower back pain for a while and pushed to get a scan - thank goodness as it is better to know (although doesn't feel that way at the moment).
I do eat well but a food diary is a good idea. I tried calcium supplements a while ago but they made me feel so ill I had to stop them. I think I'll also need to rethink lifting boxes/cases etc too to protect my back.
I'm so scared I won't be able to live a normal life anymore and it's yet another condition I have to worry about.

I genuinely can't remember. I have moved countries since then and know I haven't got that info in my medical documents as I refiled everything just the other day.

What I remember is the whoosh of relief that my pain was diagnosed and I could work on it. I felt like my bones were losing strength and indeed they were. It was hard to describe to people just how it felt.

I did a lot of small bounces by lifting my heels up and letting gravity drop me down again, starting off gently of course. I already had an old German drawing board for a desk and I found out that you could manoeuvre it to make a standing desk, so I did that when i left the gardening job and went back to corporate work, which wasn't that long after getting the diagnosis.

I would also step side to side during every team meeting (the job was working at home so had lots of meetings online). I'd try not to sit until I had to, due to pain or exhaustion.

We had a treadmill and I'd do a fair amount of walking on that, it was in the same room as my office so I did often take a 5 minute walking break during meetings whilst everyone else went to make a drink.

And yes HRT saved my life, bones being the main symptom for me.

Hi @4Tornot4T I understand that it’s a shock to you but I have had osteoporosis for nearly 30 years since my mid thirties and can reassure you that I live a pretty normal life! Yes bungee jumping and skiing are best to be avoided so if you are keen on those or similar activities you’d have to make adjustments but otherwise day to day you’ll be fine - I’d advise you to avoid heavy lifting. Your GP should prescribe medication and as you’ve said the Royal Osteoporosis Society are really helpful- there are quite a few local support groups so you could look into that too?

Thank you so much for all your helpful information. I'm really so grateful and I don't feel so utterly hopeless now. I did feel as though my lower spine was becoming more knobbly and it did ache more - just kicking myself I didn't get a scan years ago to try and prevent this.

I'd suggest you read all the info on the Royal Osteoporosis website- mases there- and they also have a nurse helpline so use it. (I think you have already?)

Presumably you are going to be referred to a rheumatologist?
This isn' t something where you're going to be left to sort it out yourself.

You will need to take one of the many drugs there are.
The most basic is a bisphosphonate taken daily as a tablet.
Other treatments include injections ( 6 monthly, daily or once a year.)

Your GP must send you to a specialist- from your posts it sounds as if this isn't in the plan?

I have a friend who has severe osteoporosis and I've been supporting her with her treatment for some years.

Yo u don't need to take calcium if you can get it from your diet- and that's quite easy to be honest. Three portions of dairy a day usually does it- milk, yoghurt, cheese - but also there's masses of calcium in tinned sardines, chick peas, salmon etc.

Taking calcium tablets is now not recommended as the calcium can harden the arteries and increase risks of heart disease.

You could also consider HRT as this is recommended as treatment for young women (under 60) either on its own or alongside the other drugs.

Exercise with weights will help- but you need to do the right ones. The NHS and the ROS has videos of exercises to help build bone in the spine, hip, etc.

I have it mildly but I can’t take HRT and I’m also on medication that slowly wrecks your bones. I do weight bearing exercise. The one to do above all others are weighted squats. Skipping is also very good. Or any form of jumping. If you can hang from a bar in the gym and drop, that’s good. Also, abductor and adductor exercises - you can use a machine at the gym for those. A weighted vest can be useful too to increase your weight.

Thank you DiamondLily. Your post is really encouraging. I don't ski anymore and too scared to bungee jump (saw people do it in NZ and it looked terrifying) but I am reasonably active - mainly walking with our dog. I do end up lifting stuff that is too heavy so I'll have to watch out for that.

Your GP should prescribe medication

Perhaps!
But not necessarily the right ones.

The issue with this is GPs aren't 'allowed' to prescribe some of the stronger drugs and stick with the basic bisphosphonates.

There are many other drugs that are more effective and you really need to PUSH for a referral.

For example, women with 2 spinal fractures are eligible for other drugs (injections or an annual transfusion with a drug) which GPs cannot offer.

Do your own research and talk to the ROS then go to your GP and ask to be referred to a specialist. If there is a long waiting list you can always pay (if you can afford it) for a private appt with any specialist of your choice, and then get the drugs on the NHS.

Have you had your vitamin D level checked? It's really important for bone health and it's recommended that if you have bone issues that you keep it well above the bottom of the 'normal' range. I take a high dose of vitamin D after being diagnosed with osteopenia in my 30s and my done density has improved significantly.

Oooh- not too sure about this @Dewdilly

The OP needs advice because anyone with spinal fractures has to be very careful. Skipping or anything that jars the spine can cause a domino effect of more fractures.

The exercises that are usually suggested are more Pilates type, using bands or weights, or seated.

@UnaOfStormhold you mention alkaline diets as weird- I’ve got a nagging worry about fizzy drinks. Are they supposed to be bad for your bones/teeth due to ph? I can’t find a sensible source to work it out!

Thanks everyone. I'll definitely ask for a referral. My DMum has offered to pay for any referral/meds I need if I can't get them on the NHS.
Has anyone had the infusions? They do sound better as bisphosphonates do seem to have a lot of side effects. Mu mum is on them and it's making her hair fall out and I really could do without that on top of everything else.

The person I know has had no side effects. She was on daily injections (at home) but was changed to an annual one.

Be aware that some are only licensed for certain levels of osteoporosis - I'm not sure from what you have said if your T score applies only to the lower spine- the 2 last vertebra- or it's a result calculated over the whole of the lumbar region.

If the rest of your spine and the total T score for that is normal, then it's not too bad.

Fizzy drinks are very bad for bones.
The phosphoric acid in them leaches calcium out of bones.

Yes I have heard things about fizzy drinks not being great (and to be honest it's worth giving them up anyway because they contribute to other problems too!) but some people extrapolate that a low acid diet generally is good, which is a much more drastic intervention and the evidence I've seen isn't great quality and normally advanced by people without something to sell.

Thanks JinglingSpringBells. That's very helpful to know. I'm not sure about the rest of my spine the results say: 'there are moderate changes at the level of L3-L4 which will cause moderate elevation of bone mineral density cslculstion and overestimate the lumbar spine BMD results' .. it goes on to say they took L1-L2 as it more accurate. So it sounds like my whole spine is knackered. Doesn't sound good does it?

My femoral neck mean T score is -1.4 which sounds a bit better.