it’s good to reach out

[MillieLou]

Got diagnosed with OP after MRI showed I had 4 compressed fractures in my thoracic spine and 2 more recent ones in lower, prior to this had pain for months and it wasn’t until I had seen an extended role physio that listened to me and made the referral. I was so shocked to receive diagnosis by letter from Fracture Liason Service, by then I had shrunk 3 inches and my body had changed shape drastically, I think it’s called Kyphosis. I was distraught about my body shape as didn’t recognise myself any more. Saw Rheumatologist and recently started Evenity, had the first 2 months. I feel alone really as people don’t understand my limitations, don’t know anyone with my condition. I’m sure there are plenty of sufferers in this support group and know where I’m coming from

[Skyelily]

Hi MillieLou, my name is Julie and I got my results after many months of complaining about pain in my spine. My physiotherapist referred me for an X-ray and it was confirmed fractured bone in the thoracic region and later osteoporosis with a Dexa scan. My pain was so severe that I considered taking my own life. I had to get help with my depression and prescribed strong pain medication. I am so sorry to hear that you’re going through this and don’t know anyone else. I joined the local gym for aqua fit classes and it helped my recovery and met others going through the same thing. Giving up my job because I couldn’t do it was the hardest decision I’ve ever made, but coming home every day crying with the pain i couldn’t carry on. It sounds like you have had it much tougher than most, but stay strong and positive, and I can give you some advice if needed about exercise, diet and staying positive, take care julie

[Sleeplessinlife]

Hi millieLou, your story is my story, and Julie's who has replied. No body understands the pain, limitations, and trauma of accepting new body shape. I'm trying to alter my diet now to see if it helps the tum protrusion, I can never get comfortable in any position, I never knew anyone like this until I came on here,it's good to read others stories,you feel less alone and forgotten by the health services.

[Haz58]

I have lost 2.5 inches since a T9 compression fracture late 2022. One shoulder is lower than the other and so is my leg on the same side. I had an MRI 6 weeks ago and have mild khphoscoliosis with degenerating discs and a few other things were noted. They initially put 'back pain' on my GP record, what an understatement! I've just been given 3 excercises to do each day as I still could stand for long even to cook without the pain really flaring up. 4 holidays spent at doctors abroad as after flying I couldn't sit, stand, do nothing except lie on a bed. don't feel lonely as there are others on here like us and it helps to vent or just have others out there who understand. We're trying a cruise in October to see if that's any better for me. Fingers crossed. X

[MsHoliday]

So sorry to hear MillieLou

I have a T10 compression fracture and some change in body shape, I’m 66 and when you are so caught up working etc it seems to sneak up and suddenly you realise that you may have to look seriously into the treatments. I wasn’t placed on that drug so can’t say. Sorry but I did some research and it’s good to have all the options available. I hope you get some good advice here and support,

[bethansgrandma in reply to MsHoliday]

Hi MillieLou. Just to say you are not alone. I have had similar experience . Developed back pain when running. Over next 4 weeks it got worse, spasms and side of my ribs very painful. Eventually managed to get an X-ray - with the radiologist rudely questioning why I was having an X-ray for back pain. X-ray showed 4 thoracic compression fractures. My experience with GP’s, radiologist, rheumatologist and physio’s is that they do not understand the pain and associated problems such as abdominal knotting/spasms. Their response implies that I just have to live with it😖.

[Canuck321 in reply to bethansgrandma]

Thank you for posting that. I had spasms at the sides of my ribs too. I thought I was the only one and attributed it to the fact I have mesh from abdominal surgery and the pressure from my stomach protrusion was causing it. I had no idea what was happening to me at the time though. I came up with that hypothesis afterward when I found out about my compression fractures. Pain was so bad I wanted to die, but fortunately I don't get spasms anymore.

[ROSModerator Partner]

Hi MillieLou,

We wanted to drop by to welcome you to our community, and thank you for joining us here 😊 As you mentioned, it can be a very lonely experience having the condition and coping with the changes, especially if you do not know anyone else with similar experiences. It really sounds like you have had to cope with one thing after another as part of your own experience. We really hope you continue to connect with our wonderful members and that our community becomes a space for you to continue to share your story.

For anyone reading this thread, just to let you know we do have lots of information (including videos) about living with osteoporosis on our site: theros.org.uk/information-a...

Wishing you all the best,

ROS Moderator

[Hidden]

Hi MillieLou,

I understand your situation exactly, and that of the other group members that have replied to you. I had five spinal fractures over a couple of months five years ago when I had a hip replacement. The pain was unbearable, and like Julie I considered taking my own life. I’d be at the surgery begging for help, and the attitude was very much that I was making a fuss about nothing. I am still very bitter about that. My life changed overnight, I had to give up work, find ways to handle the pain etc. For many months I could hardly stand up etc. I manage now by using a rollator, which allows me to walk for short distances.

Like you, apart from my family, no one I know understands why I am so limited. My old workmates ask if I’m better now when they see me, and if I try to explain, the usual response is that I look so well! It has been a long scary journey. I eventually realised there was no “getting better”, and that I had to learn to live with being inches shorter, not being able to walk any distance, rarely able to go anywhere by myself etc etc. I’m only human, so some days I do get very down. It’s been lonely to not know anyone else in the same position, and so I joined this group. While I am pleased to have found that I’m not unusual , I am actually horrified that so many of us are suffering like this. Surely this shouldn’t be happening! The ROS are marvellous, but why aren’t doctors more aware? X

[Canuck321]

Hi MillieLou. I totally understand your situation. I am still trying to accept how I look physically. I am now 3.5 inches shorter, top of back hunching over, major stomach protrusion, one shoulder lower than the other. My neck is starting to crane forward too. Not sure anyone else is facing this and has an exercise or something to slow it down or reverse it. I have a walk-in closet of beautiful clothes that I love but can no longer wear. I push a lot away mentally and have done my best to accept my new state. Everyone thinks I am so strong, but behind the scenes I am still devastated. It's so hard to accept that this is permanent. And you are right; not a lot of people understand our limitations. The good news is that you are not alone and there are a lot of people here who want to help. The more we share and encourage each other, the better for all. Take care.

[MsHoliday in reply to Canuck321]

I have a book Yoga for Osteoporosis and YouTube HT Physio for over fifties, they have exercises there and one comes to mind - 3 daily habits for less pain and stiffness but whether appropriate for you would need to check and also the information ROS posted.

[Canuck321 in reply to MsHoliday]

Thank you MSHoliday. I will check that out.