Hello to everyone
I found out this week that the back pain I’ve been experiencing for the past five weeks is due to a compression fracture. I’m devastated and I’m afraid that my former life is over. The pain isn’t improving, and I’m so fearful that I’m causing new fractures every day without knowing it. I feel really desperate.
My bisphosphonate history is a mess. I’ll be starting on a new drug next week but it feels too late
I don’t know anyone in my situation and I just feel so lost
I’m really new to all this so probably not the best person to advise. I’m so sorry though that you’re going through this. I’d definitely speak to the ROS nurses though if you haven’t for advice. In the meantime I saw a physio yesterday who has given me bone strenghening exercises. Apparently, and I had no idea about this, you can improve your bone density by doing this and weights (we’re leaving weights till after my rheumy appointment and thanks to pain in upper right shoulder). This may be something for you to consider? The nurses again might be able to advise here - I’m getting the impression you don’t have a rheumatologist on the case and I’d have thought you should have. Also do you know the cause of your osteoporosis? In my case it’s just been assumed it’s because I’m well post menopausal, but I am keen to find out if that’s right so as to treat any underlying issue, too. I don’t know of course the cause of yours but if you don’t know too I’d certainly try and look into it and so that any underlying issue can be treated. Best of luck with this. I do hope things improve for you soon.
Thank you so much for replying. I’ve been doing weights exercises for a while but my spine is in such a bad state that this obviously wasn’t helping enough. I’ve had osteoporosis for a while (anorexia as a teenager, low weight, drugs post breast cancer have all contributed). I chose to take the wrong advice re bisphosphonates a year ago and this fracture is the result.
I do have a metabolic bone consultant but you can’t just speak to him when you want to. The department is overwhelmed, I gather. I’m just so scared that other bones in my spine are breaking on a daily basis and I don’t understand why the pain isn’t improving showing no signs of improvement after six weeks. It’s getting worse, if anything.
I guess my post was just a kind of outpouring of desperation because it feels like my life is over
I’m so sorry to hear of the painful experience that you and others who have commented recently are going through. I totally understand the feelings of loss and hopelessness that often follows a diagnosis of osteoporosis, especially one that involves painful spinal fractures.
I was in the same situation six years ago I too felt that despair and frustration. Looking back now, I realised my fear of another fracture held me back so much. For me what changed was my starting to take more control, when I was able I used all the resources of the ROS to gather accurate information on my condition, treatments & exercises I found a physio who was clued up on osteoporosis and gave me the confidence to start moving and very gradually restore some faith in my body.
I joined the ROS as a volunteer, keen to help shape a more positive experience for many who’s had similar situations to face, often alone. Through that I met with many people over the years, who thought they would never get their life back or feel optimistic again I’ve seen time and time again that with the right suppprt, diet, exercise, things can get so much better.
I do understand that every case is different and you have to find what helps you I only wish that 6 years ago, when I was feeling so much pain & despair, that someone could have given me a little hope for the future
Now I lead an active life again, but with sensible modifications to how I exercise, move, lift, etc I know I’m lucky I wish you the best as you cope with this and sincerely hope you will have a better story to tell in the future
Hello sarajaneblue. I’m just dropping in to wish you the warmest welcome to our community and thank you for your sharing your situation and reaching out to other members. It sounds like your’re having a tough time currently, you have received some lovely, supportive comments from other members which I hope will be helpful to you. I just wish to reiterate their suggestion of calling the helpline nurses to talk this through and give you some ideas to manage the situation going forwards. All the best, Val, ROS Moderator
I’m sorry to hear what you are going through and can only imagine how difficult it must be. I have seen information available on this subject on the Melio Guide website and hope it might help or give you some ideas. Here’s the link:
Hello Sarahjaneblue. Thanks so much for posting. I am a very new member of ROS and your situation mirrors mine. I shall be following all the advice you have been given. So, many thanks to you and to all those who responded. Best wishes Trish
Hi. I’m so sorry to hear your story and like others I have been through it. Sometimes the pain takes a little longer to pass. I understand your worry about further fractures but as time goes by that will also lessen especially if you keep going with what you always did albeit with modifications. For example I have done a couple of holidays in Europe but use Eurostar with Eurostar Assistance. A brilliant help. I really hope thing improve and thta the worry lessens.
Hi. Don’t despair, for me it took a lot longer for the pain to go. The pain can be from your muscles rather than the actual fracture. They become ‘over protective’ of where your fracture is; pain is their way of protection. Get a referral to a physio or a chiropractor who will help release the tension in your muscles. I also had acupuncture ( unfortunately not on the NHS) , and that actually took the pain away for me.
It took me a while to get myself back to being active and feeling happy with myself. I am now careful about for example how long I go in the garden for, and I exercise daily. But I manage well. So keep going and seek professional help to get you into a good place. It is possible.
Hello. Just to second Denise’s comment above. I sustained several vertebral fractures over a period of 2 years (2020-2022) and the body gets protective of the fracture sites even aftter they are healed. Muscles become tight and the general artchitecture can change if you don’t stay mobile. Despite all the weights hype I personally just use body weight for strength training now (effective and safer) and prioritise mobility over everything. Yoga is my salvation for all those lovely twists and chest openers, balance and of course the anxiety reduction. Keep your chin up. I found the pain was horrible for the first 6 weeks but then very gradually I started to noticing it less and found I was able to do more. Hopefully it will be the same for you and as long as you build up slowly there’s no reason you can’t be active again albeit it with a few tweaks and modifications.
Thank you all for your replies and your encouragement - it’s so helpful to hear other people’s experiences. I felt very alone when I got the diagnosis.
I have my first delivery of romosozumab this week - I think getting started with this might help my sense of despair about the future.