Recently diagnosed with osteoporosis

[Lopera]

Having suffered severe back pain for several months, I had a private MRI which showed spinal compression fractures. Have had a Dexascan which shows osteoporosis but have yet to have an appointment at an osteoporosis clinic. Currently very tearful and worried about the future. I’m very uncomfortable and feel like my ribs have pressing on my hips. I’m using a walking stick but back seems to fatigue very quickly after just pottering around the house. I’m afraid to exercise in case I do more damage.

[Craftycreator]

Hi I totally understand where you are in your osteoporosis journey. It’s a life changer for sure! While waiting for your appointment I would suggest contacting the ROS nurses for advice. Look at Margaret Martin’s website too, she has a lot of info on starting gentle exercises for osteoporosis. It takes a long time in my experience to improve your mobility and after more than 4 years I cannot get anywhere near my former mobility. Fatigue is common due to the altered position of the vertebrae. Take it gently and if there is a local ROS support group I would suggest you make contact with them. I’ve made new friends through my local group and you meet people who know exactly where you are coming from. A coffee and chat can help your mood too.

With very best wishes for your future.

[Lopera in reply to Craftycreator]

Hi, thank you so much for your advice and good wishes. I feel already that osteoporosis is not very high up on the medical agenda and I will have to be more proactive. Unfortunately I am a glass half empty person and have yet to accept my lot, I'm heartbroken at what I can't do. I need to turn this around which will take time. Sorry for moaning!

[Craftycreator in reply to Lopera]

Hi I agree that Osteoporosis is way down on the health priority scheme of things sadly. I think you have to go through a sort of grieving process as to the loss of things that you can’t do any more. Once you have gone through this, try and embrace the things you can do, try new hobbies or crafts maybe. Take it one day at a time. If you can start to do some gentle exercise it will help over time. I tend to do what I can, then I just have to rest for a while then do a bit more etc. Support from family and friends etc is important too, so I hope you are getting this? You do need to be proactive. Chase up appointments as it’s important to receive advice on medication etc. Finally be kind to yourself!

Best wishes and hope you start to feel better soon.

[Teriparatide2024 in reply to Craftycreator]

Hi Craftycreator. When you say you made new friends through your local group, do you mean you found a local group of people with OP? I didn’t know there were such groups locally. How did you find the group?

[Met00 in reply to Teriparatide2024]

There's a link to groups around the country here: theros.org.uk/information-a.....

Some meet face to face, others are online only.

[Teriparatide2024 in reply to Met00]

Thanks for the link. Looks like there are none in Eastbourne though….

[Met00 in reply to Teriparatide2024]

Would you be able to get to Hastings, as there's one there?

[Teriparatide2024 in reply to Met00]

Hastings is too far at the moment, given my current health problems. Apart from theOP I have stage OA in ankle, I now waiting for ultrasound to look for intestine, blocking or vehicle implantation. The latter is due to the painkillers I had to take after my first Denosumab injection. The painkillers caused constipation, which is a no no for me due to abdominal history…. so no, can’t go to Hastings! But thank you for looking.

[Met00 in reply to Teriparatide2024]

Sorry you're having to deal with so much. Would you be interested in an online group? I think you can link up with any of those, you don't have to live locally.

[Teriparatide2024 in reply to Met00]

Yes, I would be interested, thank you. Though at the moment, I think I would struggle to fit the time in: at present, it’s a full-time job just to stay on top of everything - not knowing what to eat, went to eat, went to take the dog out, etc. But if you could give me the details of how to log on? (I’m good on the zoom. I don’t do Skype.).

[Met00 in reply to Teriparatide2024]

You'd need to go to the link I gave you before, on the ROS website. Towards the top of the page there's a further link to online groups. Then follow the Discover More link for any that you're interested in. It's likely most use TEAMs, but I'm not sure about that.

[Teriparatide2024 in reply to Met00]

Thank you Met00. XX

[Craftycreator in reply to Teriparatide2024]

Hi, so pleased others on the forum have been able to answer your question. I’m fortunate that the group I belong to try and meet every few months, arrange meetings around the county.

So sorry to hear about all of your issues. Best wishes

[fraid]

Sorry you have to join the club but there are lovely helpful people on here and you can get some good advice from ROS, you can phone them. I wouldn't exercise any injured part until it's healed for fear of doing more damage but gentle static ones while you're sitting/ lying that doesn't put more pressure on your back, may help, esp. mentally to feel you're in control. Hope you have your pain meds sorted, sometimes you have to nag to get what you need. There are so many of us with this dreadful condition so you are not alone. Hope you get help and support you need. And Xmas is coming so look forward to that! Best wishes. 🤗🧑‍🎄

[Lopera in reply to fraid]

Thank you for your advice. I have joined the ROS and have been reading the newsletters, trying to be as informed as possible. How do you know when your injured part is healed. I slept in a reclining chair for a couple of months because getting out of bed was agony. I am now back in bed and can get out without much discomfort. So I'm hoping it has now healed. Definitely looking forward to Christmas but I don't think it will be me lifting the turkey in and out of the oven!

[Soupsandsmoothies in reply to Lopera]

Hi it took me a long time to accept OP after spinal fractures and six months in I am feeling a lot better mentally and physically and as others have said ROS amazing and supportive. My weekly seated Pilates class has a few lovely ladies who have OP and have encouraged me and physio and walking. I couldn’t do these six months ago but I can now so my just keep putting one foot in front of the other each day as I have and I have come such a long way as I am sure you will. Good luck.

[Nannyollie]

Your post sounds as if it could have been written by me! I am still very new to all of this and can definitely relate to what you say about being tearful. There have days when I've sobbed. So sad for all the things I could do until January this last year. I was very independent and confident but so much has changed. I've found that progress isn't made unless we keep chasing so it's very important to try to keep motivated. I'm so glad to have found the ROS. Half the problem I think, is not understanding what's happened /happening.

[Lopera]

Yes, we sound in very similar positions. I think I’m in a kind of mourning phase. Desperately sad that I can’t pick up my new granddaughter. I’m trying now to think of what I can do rather than what I can’t. Desperately embarrassed about the kyphosis, using that term because it sounds better than ‘stoop’. I’m looking into physio led rehab as I want guidance on how to get as fit as I can with this condition. My husband has been amazing, yet I feel guilty because I’ve changed his life too. Best wishes.