Hi all. I haven't been here for a while because of various problems. I have been reading through the post's and I cannot believe how much a lot of you know. I asked my Dr. a year last January if he would refer me for a DEXA Scan but for some reason he wouldn't do it! I had been diagnosed with 2 vertebral wedge fracture's. The pain is awful despite Opioid's and Oramorph! I kept asking for a DEXA and in February this year I I asked again and had it done last week. The 2 fracture's are at the base of the spine and the next 2 up are showing up white so are showing thinning and Osteoporosis as are my hip's ,shoulders,my knee's have Osteoarthritis. I haven't had the results from my Dr. ,just the Radiographer who is shocked that I have not had any treatment or seen a Specialist. I do take Vitamin D.
I must admit that I am still desperate. Anybody who remembers me from before will know about my cancer misdiagnosis which has left me with multiple health problems. I'm so exhausted with the pain and constant battling to get somebody to care enough to help me. The level of care or lack of care here is so frightening. I did join ROS and thank goodness because they are the only people who have helped me. All I want is somebody to talk to me about what is happening and what I can do to help ease the pain. Before I got lung cancer I walked for miles with our dog's but now I walk around the garden and I'm exhausted. I also have Diverticulitis and a" massive " hernia . What a wreck. How do I get the medic's to help me ? I will ask the Receptionist tomorrow for the DEXA report. Thank you to all on this Forum and huge thank you to all at ROS.
Danni
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Danni54
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I don’t know if this helps but after cancer I had the same problem as you. I saw a surgeon at Gobowen near Oswestry and he recommended high strength Boron and Strontium.
Hi. Thanks for replying. I will let you know but I have no expectations! Since the cancer misdiagnosis and after the Lobectomy, I haven't had a huge amount of support except when the 2 fracture's were first found and my Dr. rang to tell me that it was cancer and he ' would be with me till the end " ! Then 5 day's later said that our hospital had reviewed the Xray and it wasn't cancer but Osteoporosis! As they were the one's who ignored the tumour on my lung for 15 months, I don't know what to believe! Take care and all the best.
What a shocking experience, Danni. I know it's inevitable that doctors will occasionally make mistakes, but it seems they're all under such huge pressure at the moment that they're simply not devoting sufficient time and attention to individual patients. Maybe you could ask for a referral to an osteoporosis specialist (usually a rheumatologist)? If you can afford it, I would recommend getting a REMS scan and consultation if you're able to access any of the clinics: osteoscanuk.com/. Regardless of your DEXA scan results, the fact that you've had wedge fractures suggests a high fracture risk, but Dr Nick Birch is very thorough and approachable and will talk you through your options, not just meds if he feels they're appropriate, but supplements and exercise too.
I would also recommend that you ask your GP to run blood tests to find the cause of your osteoporosis: check your Vitamin D, calcium and parathyroid levels at the same time, plus thyroid, coeliac and a full blood count. Sometimes correcting other health issues can help slow down bone loss, and in the case of hyperparathyroidism can even restore some bone density in some cases.
Thank you so much. Wow ! You and Mavary have given me a lot to think about and a lot to speak to the Dr. about. You have also been through a lot. I agree that Dr.s , Nurses etc. have gone through hell with Covid and I am incredibly grateful to all medical people who dedicated themselves to Covid and it's been so frightening for all of the medic's as well as all of us ....but....there had to be a but....friend's had their Chemo stopped, 2 have died also my lovely brother in law and other's have faced the fact that they are terminal because their Chemo was stopped. For the rest of us, we have been left to deteriorate because how can a Gastroenterologist diagnose pain on the phone and how can a Specialist know what pain we go through with wedge fracture's unless they see us. I can't speak too well because of the Lobectomy and the 10cm hernia and the fracture's which are squeezing the lung's. The Radiographer told me that. He was horrified at the lack of treatment and misdiagnosis of the lung cancer. They had the tumour on an Xray but ignored that for 15 month's and my husband was told by a Dr. that I was a hypochondriac when I felt so ill and she told him that he had to get me up and about. They changed their opinion when I got pneumonia and was rushed to hospital and the only lovely Consultant at our hospital was horrified that nothing had been done about the cancer. This year has been hell because I have woken up at night coughing, very sick , probably 3 night's a week for an hour and a half apparently because of the hernia. That hurts everything despite morphine and Opioid's. I read that Osteoporosis doesn't cause pain until something breaks but I have pain everywhere. I only had from the hip's up scanned so is that normal for a DEXA? I have lost most of my teeth and have a plate now . I was so active before the cancer misdiagnosis. I tutored adult Art Classes, put on Exhibition's, walked our dog's for an hour in the morning and 2 hour's in the afternoon , looked after parent's and so much more. I'm going to be 70 next year but I'm not old ! I have a fairy garden and love painting fairies and dragon's etc.! I haven't come to terms with being an "invalid " and I feel so pathetic! My spine is also curving quite badly. My husband doesn't like to admit that this is happening and he hates me using a walking stick . This is all why I'm moaning to you...I hate moaning as well!!!I will leave you in peace now. Please take care and thank you to you and Mavary for ' listening ' ! All the very best.
Annie, I'm so sorry that you've been through such hell, and that it all seems so endless. Osteoporosis itself doesn't cause pain, but some of the causes of osteoporosis are painful (eg low Vitamin D, hyperparathyroidism), as of course are fractures and their repercussions. In addition, some of the osteoporosis medications can cause bone and muscle pain, the last thing you want if you're already dealing with painful fractures!
I have to admit I think too many people who haven't fractured are being misdiagnosed with osteoporosis and put on medication that may do them more harm than good! (I believe this, because you can have strong bones and never fracture, despite an osteoporosis diagnosis because of poor t-scores. DEXA scans only estimate bone density, which isn't necessarily the same as bone strength). That also leaves those like yourself, who have fractured and are in a lot of pain, not being given the extra time and understanding that should go with a condition that, for you, can be very disabling.
I'm currently one of the "lucky" ones (or maybe misdiagnosed), without fractures, and still quite active. Despite that, I remember what a terrible shock my diagnosis was, and have lived with an element of caution ever since (for example, I'm pretty scared about slipping over on wet leaves or ice!), maybe not a bad thing, but it can easily make you too wary of normal activity. I've had zero interest from the NHS since my diagnosis nearly 8 years - the only appointments I've had have been when I've requested them. I really do feel for you and others who have osteoporosis with fractures and all that entails, and wish there was an easy solution. Sadly our NHS is currently in such an appalling state that I can't see anything changing any time soon. However, I have come across a few people who have very good, well-informed and supportive doctors, so the only other thing I can suggest is that you ask to see a different GP.
Unfortunately spine curvature is an almost unavoidable result of wedge fractures. I've read that some people find it helpful to use walking poles, as these help them to stand a little more upright, and I believe there are exercises that can strengthen the muscles that support the spine, which may help relieve pain and can also help with posture. But I don't have any direct experience with this, so am only quoting things I've read. It might be worth seeing a physiotherapist experienced with osteoporosis (beware those who say it's OK to bend forward, ask you to touch your toes etc!).
I'm sorry your husband is in denial, as that must make things so much harder for you. I do hope he soon realises how unhelpful that is and starts to be more supportive.
Wishing you well and hoping you find some more constructive help very soon.
I think the value of these forums are that we get that we need to vent sometimes and that this is a ‘safe’ place to do so. Horrified at your lack of care and I would consider a complaint to the QCC in order.
PS - as a retired Psychotherapist I encountered many people whose partners couldn’t cope with their partners’ ill health and somehow thought it reflected on them or were just terrified of consequences because of what it would mean for them.
Hi. I was wondering if you would mind telling me what strength boron and strontium your surgeon recommended please? I’m sorry but I’m not in the mood to explain everything that is going on with me as I’m in a quandary at the moment not knowing what to do. The doctor was very firm with me the other day and said in a stern voice ‘you need to do something, you’re only 71!’ This was after me refusing drugs as I’m allergic to so many things and after reading all the side effects associated with the OP drugs.
I have several spinal fractures and my T scores are lumbar -4.6 and hip -4.2. I also care for my husband who has Parkinson’s disease.
Which doctor recommended 30mg boron? I've read that you get little if any extra benefit from taking larger doses compared to 3-6mg, and that 20mg is the safe upper limit!
I can relate to there’s not a lot of help out there. You can get pain killers from your Dr which is a route I chose not to go down. I’ve had seven spinal fractures. I also suffer with Diverticular disease. I’ve had my sigmoid colon removed so it’s manageable now. I couldn’t tell you which is the worst pain when you have a flare up. You should be going on some bone meds soon. Once they’ve got the reports from the Dexa scan they will probably put you on something. They usually start you on Alendronic Acid. I couldn’t take them so I was put on Terraparatide which I had to give myself every day for two years. I knew I had to do it because of my low bone score. There was no alternative. I didn’t think I would be able to do it but once you’ve done a couple it’s a piece of cake. I had that for two years and I was then put on Denosumab. I haven’t had any more fractures for a year so am keeping my fingers crossed. The pain eases a little bit after a while. I’ve still got pain from mine after the first three went four years ago and the last four last year. I understand the pain is because the bones heal in a different position. I don’t think there is anything they can do because obviously your bones would be too weak. I claimed attendance allowance which has been a great help to me. I’ve bought myself a dishwasher a scooter and a recliner for my bedroom. If you don’t hear anything for a couple of weeks after the Dexa scan I would be chasing it up. Or get your Dr to do it for you. You need to be on bone meds.
Hi Mavary . Thank you so much for replying. You are amazing! How on earth do you cope with the pain without painkiller's? When I get a really bad bout of Diverticulitis my spine pain gets worse and I'm now getting a lot of pain from the huge hernia. My Dr. doesn't want to put me on Osteoporosis medication because they would cause more problems with my stomach. I contacted the ROS Nurses and they sent me information about having injection's or a drip and I gave that to my G. P. but he did nothing. Getting the DEXA Scan was a struggle! I had that last Friday so I have another week before I get results. The Radiographer did tell me that the next 2 vertebrae are pretty bad and other bones are thinning . Unfortunately, the hernia pain is getting worse. Mostly, I can cope but I seem to be in a big, black hole just now. My big toe is alright! Yay!I know that Covid has been incredibly awful for the NHS and the people who I feel so sorry for, apart from the people who caught Covid, are the Nurses. The pressure on them has been massive and they are now doing so much more. The last 5 year's have been a complete nightmare and while I know that I'm so lucky to be here after the cancer, it's still hard to live with everything that has gone wrong, physically and the pain , back and front!
Wow! I sound horribly self pitying and I do apologise!
Have you seen a Specialist about your Osteoporosis or do you just see your G.P. ? I don't have anybody, medical, to speak to about all of this . I had an Xray on my knee's which showed Osteoarthritis so my Dr. gave me a Steroid injection into my right knee which gives way occasionally and it helped a bit but I just felt that he is fed up with all of my ailments and I'm costing them a fortune although I only phone them when thing's are really, really bad.
Are you still painting? I really want to get into it again because I haven't done any for a long time and I really miss it. Thank you again for replying. Please take care and let me know how you get on.
No you’re not moaning at all. I felt I was ignored with my Diverticular disease until I became an emergency. I saw a consultant two years before I had the op and he was horrible to me. He sent me for a colonoscopy which they couldn’t even get around the first corner. I was in total agony and I had tears running down my face although I didn’t think I was crying. I had a virtual one after that didn’t show up anything other than I had a bit of diverticular disease. I went on for another two years in agony. When I eventually went in hospital it was the same consultant. I told him I had seen him two years previously and he asked me what he’d said to me. I told him he had treated me as if I had nothing wrong and was really horrible to me. He looked at his notes and he said it was because my Dr had sent me down on a fast track. Anyway he couldn’t have been nicer after. I had my first spinal fracture in 2013 which the Dr treated with Tramadol. Then another said he didn’t want me to take it because I presume my diverticular disease which was getting pretty bad then. I then had another fracture in 2018 and I was sent for physio. On my second visit she asked me if I’d ever had an X-ray which I said no. So I went for the X-ray and was told I had two fractures and one was older. She referred me back to the Dr and I was sent for a Dexa scan which showed my bones to be really bad. Just after that my T 12 went and I couldn’t even walk to the loo. I was in hospital for twelve days. I could barely lift a kettle. They had given me some Alendronic Acid to take and I had one the day before I went into hospital. I was violently sick while I was in there due to the Alendronic upsetting my tummy. When I came home I was given Terraparatide injections which I gave myself for two years. I then had to change to Denosumab and not long into taking them I had four more fractures. So not good. I had steroid tablets given me over four years ago now. It was for Pneumonia and Aspergillosis. That’s what finished my bones off.
No I haven’t done any painting for a long time. I can’t remember which ones you saw. My last ones were lighthouses. I got my pad and pencils out a few days ago but still haven’t started it. Living on my own I’ve got everything to do and it takes me longer. I have got a cleaner and an ironing lady but I’m the chief washer up and bottle washer. Yes I’ve had really bad pain but I take CBD oil if it becomes a problem and anyway if I’m sat in my recliner or lying in bed I’ve no pain so for the short times I’m doing things I’m not taking painkillers. Another thing is if it becomes bad I sit down for a minute or two then go back to what I’m doing. I was once told I don’t need to be a martyr but I don’t think I am. I like a clear head so I can still drive. I only use the CBD oil if I’m not going out. I’ve had pain so bad that I can’t breathe many times. But I sit back in my recliner with my feet slightly raised and it goes away.
I wish you luck in your journey. I can’t see how they can’t give you bone meds. They really need to sort out your diverticular disease then perhaps you can get somewhere. I still remember the pain I had with that. I’ve still got diverticular disease and I do get niggles from time to time. But nothing like I used too. I ended up having a blockage. I think that’s why the Consultant was nice to me after because he realised I had suffered for another two years after seeing him.
So pleased your big toe is alright! At least that’s one bit of you functioning😂so sorry to read of all your problems though.I had to change GP to get any help with pain meds which at least keeps the worst off,I have 6 vertebral fractures,kyphosis- the latter most irritating as I can’t even stand up straight when I do manage to walk a bit.I’m on Fentanyl patches,top up with Tramadol,best I’ve found after trying loads meds,but everyone is different.Hope you get help soon,cannot they sort out your hernia at least?
I am sorry to hear about your woeful lack of care. Our GPs buy in scanning services from the private sector. I was told to chase up my DEXA scan with the GP if I had heard nothing after one month. The GP surgery told me to keep chasing it up with the Scanners. Results not ready for 12 weeks as they were running behind. I hope yours come quicker!!!!
Oh! That is scandalous! Are you in a lot of pain ? Even waiting for a month for results is bad. I am so sorry. It shouldn't be up to you to chase thing's up but that's the way of the world now. It's hard going when you are in pain! My lung Xray was sent to Australia because our hospital couldn't find enough Radiographer's. They were the one's who saw my lung tumour but our hospital ignored them! Good luck with your scan and treatment. Please let us know how you get on. All the best,Danni
All I can say is that you have been put through hell and I now hope you get the care and treatment you need and deserve. Sending you loads of hugs and wishing you well for the future x
Thank you for the hugs. They help! Unfortunately, the only people who seem to care are the Radiographer's who have been really kind and the one who did the DEXA was so understanding and explained what was happening more than my Dr.s. I can't help but get scared sometimes when the pain is severe and when you have been told that Australian Radiographer's have seen cancer at the fracture's and then ours see Osteoporosis and having gone through lung cancer, when the same thing happened but Australia was right then who do I believe? I see that you have been through a lot and I wish you all the best. Thank goodness for people like you on the Forum's here because you have all kept me going with your kindness.
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