Hello

[Feline4]

I have several fractures, lost 3.5 inches and in a lot of pain. I feel quite isolated these days with my life changing so much. It all seem hard to cope with. I try my best to stay as active as I can and stay cheerful. I'm very pleased to have found this wonderful online group.

[Fruitandnutcase]

Welcome to the group Feline4. Osteoporisis is a daunting thought isn’t it. I’m sorry to hear you feel alone and also that you have lost so much height but it’s good that you are keeping going and staying active.

When I was first diagnosed my husband said that I was still the same person that I was before I was diagnosed and he was correct and you need to remember that you are.It is a daunting thought though.

The ROS has support groups in some areas - might be worth checking to see if there is a group near where you are where you could make contact with others in a s8milar situation.

theros.org.uk/search?Search.....

PS - Did you choose your name because you have 4 kitties?

[rockingseventies]

Hello Feline 4 (great name!). There are people in this group who are really knowledgeable and have their personal experience to share so I hope you will find it useful as I have. Sometimes we just need to be able to reach out though when we are struggling and know that there are others going through something similar who will understand. We're here for each other x

[Craftycreator]

I do hope you get good medical and social support from friends and family. Osteoporosis can be isolating because you simply cannot do so many things you used to do. I do hope you find a support group in your area too. I think you have to go through a sort of grieving process before you can adjust to your life after crippling fractures. This takes time, but do try and keep moving and do what you can. Don’t be afraid to reach out to others too. Sending very best wishes to you.

[Granniebythesea in reply to Craftycreator]

I felt quite emotional when I read your reply as you’re absolutely right about going through a grieving process - I hadn’t really thought about it in those terms until you articulated it… I’ve certain been through the dark times of reflecting on all those things I can no longer do but now try and focus on trying different things I can do, which has certainly helped lift my mood, it’s def o good to have kindred spirits on the group to reach out to.

[CinnamonRose in reply to Granniebythesea]

That's just it, the grieving process.I've had a therapy session with the Osteoporosis Psychologist and just one session has helped me tremendously.

Xx

[Fruitandnutcase in reply to CinnamonRose]

How did you find your Osteoporosis Psychologist? I have never heard of that before but grieving for who you were before definitely makes sense doesn’t it.

[CinnamonRose in reply to Fruitandnutcase]

I'm under the team at RUH, Bath. The Osteoporosis nurse is really good, she got me in for hydrotherapy which is the tops, couldn't recommend it enough!When she phoned about the Zolendronic Acid infusion we were talking and she suggested it and actioned it

I didn't wait long at all.

Being able to talk to someone freely, knowing that they won't be hurt/take offence, being able to say how you really feel, instead of, thanks very much I'm fine, don't worry about me🤷🏻

It makes a tremendous difference, I've been married for 45 years and the change of life style for both of us is huge, it's been as hard for my husband and family watching me suffer as it has been for me.

They've all had to adjust as well.

It's no longer we'll go to dad and mum's for dinner, it's we're coming and will do dinner for you.

It's accepting the change

I always try and put on a bright face and not let it get to me when I can be screaming inside.

To be able to tell someone is such a relief.

Every one copes in different ways, I've always coped, always managed, kept house and garden, we did loads of entertaining/socialising

And now I've realised I've built a wall, don't want to go to friends, don't want them to see me like this, don't want to admit I can't do what I used to do

I'm being open and honest here as I suspect there's lots of fellow sufferers that are in the same boat.

Learning to let go, to find joys in simple things and writing down something good that's happened, even if it's only I got up and made the bed!!

Or the sun is shining, someone messaged, I phoned a friend

Birdsong

It helps.

I'll be re-reading this as a reminder on a regular basis

Practice what you preach girl, she says to herself! 😅

Sorry, rather a long speil!!

[Granniebythesea in reply to CinnamonRose]

This therapy sounds ideal - I’m pretty sure there’s nothing like that here in Chichester though - I haven’t even seen a specialist… just given the Alendronic acid tablets by the GP and basically left to get on with it.

I can so relate to everything you’ve said - occasionally if I’m having a particularly bad day I might open up to my husband (of 48 years) but tbh he must be bored with hearing about it by now and although tries can’t really understand what it’s like. I said to him I feel like my body has been taken over by aliens with pains and muscle spasms I never had before spinal fractures!

Like you I try and stay positive but keep looking longingly at my beautiful bike in the garage, and although I’ve never fallen off it, don’t feel I can risk riding it when I’ve been given a label “high risk of fractures”.

Stay positive - isn’t it great we have this forum to open up to each other ❤️

[Fruitandnutcase in reply to Granniebythesea]

Like you Granniebythesea I really, really miss riding my bike, unlike you over the years I have fallen off a few times - I’ve never damaged myself though which was why discovering I had osteoporosis came as a bit of a shock! I used to think ‘ no damage, yay, my bones must be fine’. Just goes t show doesn’t it. So, I think cycling is probably out for me too.

[CinnamonRose in reply to Granniebythesea]

Yes it is, it's a great comfort, I've not long joined but it's so encouraging to be able to have contact with others in the same boat. Friends sympathise and are kind but here you know they empathise, they know what you're going though🤗 🙏🏻

[Fruitandnutcase in reply to CinnamonRose]

Wow, that is so impressive. Well done you for taking control of your life and you’re right - appreciate the tiny things in life. Everyday life is full of them if you look and there are far more tiny, simple things than ‘major events’ in your life. For example I walked into town yesterday and passed two different ladies walking the other day and we smiled at each other - great big genuine smiles and it felt really good.

Hopefully you will come to terms with your ‘new body’ and work things out with the help of your wonderful osteoporosis psychologist and nurse.

[Pineau in reply to Granniebythesea]

Yes Granniebythesea, you're absolutely right about the grieving process, that's exactly what my counsellor said to me!! A friend sent me a diary, and I found it really helpful putting those negative thoughts down in writing at the end of each day, and then finishing with 3 things I was grateful for. I still do it, helps me stay positive

[Granniebythesea in reply to Pineau]

I love this idea and may steal!!

[Pineau]

Hi Feline4, I felt exactly the same when I got 4 fractures in a row and was in extreme pain. I couldn't face up to my changed body shape and especially all the things I would never be able to do again, and constant pain really wears you down, doesn't it. But fractures do heal, your pain will gradually ease and that will lift your mood considerably.I actually managed to get some telephone counselling through a local charity and it helped me enormously when I was in that black hole. Now, several months later, most of the pain has gone and I feel much better. So don't despair, it will get better and you will get through this.

[Granniebythesea]

I know how you feel - I did reach out and talk on the phone to one of the ROS specialist nurses, in my darkest times, which helped. It’s also very good to have this community of fellow sufferers who understand. Stay strong and seek out new activities that you might be able to manage - that’s certainly helped me move forward with my mental and physical health.

[Rooruby]

Hi glad you found this group. ROS have been so helpful to me helping me make decisions on medication etc. This group and everyone on it are also so helpful it makes you realise your not alone and many give you hope. I was a very active 61 year old when my fractures started I'm now over a year on and sadly still have fractures. My life has changed massively from being completely independent to having to ask for help which I absolutely hate. As time has passed I am beginning to accept more and try and do things I can do not ponder on things I cannot anymore. TBH acceptance was the biggest issue for me. Good luck with your journey and just take 1 day at a time

[CinnamonRose in reply to Rooruby]

I feel just the same xx

[Granniebythesea in reply to Rooruby]

Totally agree re acceptance - it was the hardest thing for me as everything changed literally overnight! 1 day at a time - great advice!

[28Harvey28]

Hello Feline4. I am so glad you have reached out to this group. I do understand how you must be feeling. It is so difficult to accept the massive changes that suddenly happen to all aspects of your life and that's ok to feel like that. Like others have said going through this loss process is difficult but in time you hopefully will find it gets easier and you will find things that you can do and enjoy. I have been going to a Chronic Pain Coaching group that meets monthly which I have found really helpful. In this we have been learning about dealing with loss and the benefits of mindfulness exercises (seated), managing pain through distraction rather than heavy pain killers and lots of other things. It was some time before I was well enough to go to this group following fractures and I was also really anxious about leaving my safe place being my home and going to a group where I might not be able to stay for the whole session. I was just putting too much pressure on myself and soon realised that there were no expectations and I was doing this to myself. I am now finding that day by day I am finding new things to do (within my limits). I have just gone back to playing the piano after 50 years of not playing. I couldn't have done this this time last year because I was in so much pain and was barely able to stand, sit, lay etc., but now I can sit for few minutes at a time and play sometime. I have found that looking back at the end of each day/week and recognising what you have achieved (no matter how small) has really helped me. Sending you best wishes

[Granniebythesea in reply to 28Harvey28]

Great advice!

[Tofueater]

hello Feline4. Sorry to hear that you are suffering so much. The pain of osteoporosis fractures is awful and only those of us who have experienced the pain know how isolating and frightening it can be. I also fractured my left hip, then later suffered compression fractures in my spine. The pain is something else. Life is different now. I used to class myself as being fit and I used to walk regularly, but I have had to adjust to life as it is now. I do what I can and as much as I can, but you have to make sure that you look after yourself and rest when your body tells you to…..which it does! Be gentle with yourself. Accepting that life is different is hard, but use what support is out there….from the ROS and this group. Wishing you all the very best.

[Ketchican]

Hi Feline, So sorry to learn that you are feeling as you do but absolutely understand and share some of those feelings too. I have spinal fractures and live alone, age 77, and have previously been very active and still working. Accepting that life has changed is hard but the wonderful people that use this site remind me that there is always a brighter future even though it is hard to see through the fog of pain. I do hope that you will get the medical support that you need and that you find this group to be of help.

Good Luck.

[BentleyBowtie]

Professor Belinda Beck of Grifith University in Australia has put together a most wonderful programme called ONERO where people with osteoporosis do a fully supervised by physiotherapists programme lifting weights and improving balance. I know she recently visited the USA not sure what other countries the programme is running in. We go twice a week for half to one hour and pay $27.00 for each session. She also has an online programme for those who cant get to a gym. Her results are great. I have had fractures at L4 & L5 plus older fractures in spine I never knew about. Having had horrible side effects from Prolia, i.e. high blood pressure, high cholestrol and aches and pains all over I stopped it and rebound effects werent good. I have been on programme for 9 months and looking forward to next DEXA scan. Its a great add on for those people already on medication or also for those people who choose to not medicate.

[Southerngirl2787]

I am so sorry you are in pain...most of us here have been where you are right now. I have had 10 + spinal fractures, they are the worst pain I've ever experienced. There is "the other side of the mountain" with them...I'm 2 years post, with fusions in that mix as well as nerve impingements...it will improve in time. Best advice I can give, get up and walk as much as possible. I use hiking poles to help me move safer and faster! Add low weights when you can...then bands are good too. Everything slowly.

[ROSModerator Partner]

Hi Feline4 ,

Welcome to our community!

Experiencing daily pain can be so draining and make us feel very alone so it's so great to see you here and we hope that our community offers you the place to share with others who really understand

If you would like more information and support for living with osteoporosis, please check out our website: theros.org.uk/

Wishing you the very best,

Lulu

ROS Moderator

[tangocharlie]

Im in the same boat. It's been a struggle first to get a diagnosis and then now to get help so I have made a big mind-map of all the things to look into, from getting any aids that might help like a lightweight rollator/walker to dealing with the psychological aspects. Even things like sortign out travel insurance - and working out what I might be able to do and where and how. At first friends and family didn't understand and just thought it was back ache that can be sorted by doing more exercise and that's so not true. So educating those around me and explaining how things have changed has helped. Looks like you are getting some very good advice on here so I will come back and read and write more. We have to find a balance of keeping going but not overdoing it and risking more injuries. There is also the 'grief' process as people have mentioned as I am now realising it's not going to fully get better and life has changed. The ROS nurses are brilliant if you ever want to just talk things through