I have 4 vertebral fractures . Thoracic one has 80 percent bone loss and I think it L5 has 60 bone loss . Dexa scan showed -3.8. I have also lost 3 inches in height .
I’m struggling where I am so short and have put on weight as my stomach is bloated a lot ( or feels like it is) . I look heavily pregnant most of the time lol.
Can I ask is this normal ? It gets very uncomfortable.
Thank you .
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Looby60
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Hi, I am 60 and fell on ice in jan 2021 and took till august 2021 to get diagnosis after paying for private scan. And have same issues as you and general soreness around ribs and lumbar and a now round shoulders, but cannot get doctors to show any interest. I havent seen any doctor face to face since I paid for consultation and scan. It just feels like you are the only one and just take the painkillers and go away.
Hi! I was taking paracetamol and one evening I felt so sick that I wouldn’t take any more. I’ve always said they make me feel sick but I’d taken a second lot and felt really sick. I don’t want to take anything that will stop me driving so I hesitate to get anything from the Dr.
Hi Looby 60,Where have you got the figures from for the 80% and 60%.
I think maybe you have misinterpreted your numbers.
It makes more sense that you have lost 20% and 40%.
I have seven spinal fractures in the Lumbar and Thoracic.
When we fracture and as a result lose height, amongst other changes that take place is the problem of everything moving downwards.
This causing our stomachs to look so much bigger, bloated , and swollen ( even if the rest of our bodies are skinny or we are underweight.
Our clothes become very uncomfortable and can also be very ill fitting.
For some people (myself included) wearing a normal bra can become impossible, trousers come right the way under the bust, and any tops with an average round neck can stand away from the back of the neck without laying flat.
Yes I am sorry to say that for some of us, what you describe is now the norm.
You will I am sure receive many helpful replies to your post.
Hi there . I had MRI scan in March initially and it showed 3 vertebral fractures one of which had 60 percent and further one had 40 . Second MRI in July said further bone loss of 20 percent on those 2 plus another fracture .
Like you I find bras difficult and also waistlines up to the chest . So uncomfortable isn’t it .
Ah well roly poly look it is for me lol .
7 fractures ? You poor thing .must be awful .
Can I ask do you struggle to walk ? I cannot walk far and need to use 2 sticks or a walking frame .
Oh gosh! They do say that when you have a compression fracture you are likely to have more at some point. I suppose it's because of them being wedge-shaped. I didn't know about T4 until L2, 4 and 5 were found on an MRI because the lumbar ones were so painful and I was crippled for a while, using a walking frame and then a stick. The walking frame still helps me when I first get out of bed in the morning, but now I only use the stick when I'm out and have to walk further than I would have to in the house. I'm much better if I can stand upright, as the stick encourages me to lean forward. I visit a chiropractor about once a month but since my last appointment, I've been taking pregabalin, which really relaxes me all over. I'm seeing her on Thursday, and wonder whether she will notice a difference. I am so sorry you have T8 and 9 problems. I wonder whether there is any treatment you could have (might be surgery - sorry). Such a sudden total change in your life - I don't think it's right that you should have to rely on machines and other people in order to live normally and that's not even a good word to use. 🤗
Hi Looby 60. You sound very much like me. How do you know how much bone loss is in each vertebrae.? My spine has gone from -5.5 to -4.3. I’ve had seven fractures in all the worst one being my T12. Which I was in hospital for three years ago. I was in for a couple of days this year because of my breathing which was bad because 4 more fractures occurred. I was told the thoracic ones are the most painful. I lost three inches in height after the first three fractures. I don’t know how much more I’ve lost with the last four. People keep asking if I’ve put on weight because like you my tummy looks like I’m pregnant. I thought about going on a diet but am afraid to because I don’t want to deprive my bones of any vitamins. And maybe my tummy will help hold the bones in place. I do t know! I’m not sure! I do know if I do much it’s so painful.
It’s difficult isn’t it. I think my last bones went when I lost weight. Hence my hesitation to lose more. Like you I’ve put on weight. I think I’ve put on about eleven pounds. The thing is we are getting no information anymore because the hospitals are all tied up with covid. I get a phone call once a year and a dexa scan every two years. There is nobody you can really talk to about it. Even the Drs haven’t got the time for us. It’s like we are all alone. That’s why we turn for help on here.
Hi again . Well that’s me convinced . I need my extra padding to protect my bones lol.
I am on gabapentin and paracetamol. They say gabapentin makes you sleepy but I haven’t found it does .
I am also on prednisolone for Polymyalgia.
Do you have an osteoporosis nurse at all ? She is the one who put me on Forsteo which is supposed to build bone . As far as I know it won’t help the ones already fractured though .
As I cannot work I’m almost always around if you need to vent .
I’ve got osteoporosis badly. It’s annoying because I’ve always been the one in my family that’s done a lot and now I’m struggling. I won’t give up though. I’m still trying to do things. I’ve not got an osteoporosis nurse. I’m under a Consultant at the hospital but they only want to know once a year. My Dr has referred me to the local council as they have a place they can assess me and assess my needs. I haven’t took them up on it yet as it’s a few miles away and I’m not sure how to get there besides I don’t know if my back will let me drive that far. Prednisolone is a steroid and that’s what finished my bones. They must have been bad but I’d only had a small break in my hand which I fell on so didn’t know I had weak bones. Then I had pneumonia and after Aspergillosis which is a fungal allergy in the lungs. I was given steroid for it and hence all the broken bones after. I would think you would be covered by the Forsteo. Do you have to inject yourself every day?
Hi Yes every day but it can take a lot of months to protect the bones. Varying results for people . Plus as with all meds some horror stories too when I researched it .
We will just have to see .
You really have been through the mill haven’t you .
It’s suprising what we can put up with and learn to adjust to isn’t it . This time last year I was working full time .
Then bang . I didn’t fall it just happened and I collapsed with spasms and couldn’t get up .
Your GP should be there to support you . I have to admit as soon as mine saw my first MRI scan he has supported me and got some help for me as in spinal team and dexa scan .
You aren't bothering them, you are seeking care. Please reach out to them if you have any questions, concerns, or needs. That is their job.
Those of us who have tried to "follow the rules" related to COVID -- social distancing, wearing masks, getting all three shots (unless medically incapable of doing so)--should not suffer because of the fools that have refused to follow the guidelines and who refuse to get the vaccines.
Thank you! That was one of the first things I did after my last fractures. I’ve found them very helpful. More so than any of the Drs or Consultants that give you no information whatsoever. They just send you home from hospital to deal with it in your own way which is probably the wrong way. Actually they are based not far from where I am.
I think you can only be on Forster for two years then you switch to another similar to Alendronic acid or the one I have which is Denosumab. It was five months into being on this that my last fractures went. They said it takes between one and two years to work. I am now nine months into it. I reckon by two years I will be like a worm wriggling on the floor with no bones. 😁😂
Just had second really bad reaction to Forsteo so that’s me done with it . Heart rate shot up and chest pains . Unfortunately I suffer from anxiety and sadly cannot deal with that on top of everything else .. ah well back to the drawing board I guess lol
Oh no! What a shame. It protected me from breaks for two years. I’m so sorry to hear that. It just goes to show we are all different. It was AA for me. It really made me ill.
Hi, I have 5 spinal fractures and have lost 5 inches in height. I feel like one of the cartoon characters that has had a heavyweight dropped on their head and their bodies now look like a concertina. Clothes nolonger fit because of the rolls of extra skin and my ribs sit inside my pelvis so I can't bend to the side.I can't reach things on higher shelfs. The pain in my mid and lower back was constant and I spent weeks at a time sleeping in a recliner chair as I could not lydown in bed. pain meds were limited due to damage caused to my stomach by alindronic acid. Struggled to keep active but determined to keep walking in the fresh air every day. After 3 years of constant pain I had FACET JOINT MEDIAL BRANCH BLOCKS in 3 different areas and my goodness it gave me a new lease of life. I still look squished but I can move without pain so have been able to increase my general fitness level. I can sleep in my bed, stand without pain. It is now 6 months and I only have the occasional twinge if I do to much. Not only has my physical fitness improved so has my mental fitness,
Branch blocks injections and I was told if they kept the pain away for a minimum of 6 months then they could be redone. So I have the peace of mind that when the pain returns it can be treated again. The pain of lying on my stomach for 10 minutes for the injections was so worth it.
Oh you poor thing. That sounds awful. I don’t know as I would ever be able to have anything done because of my age and my lung problems. I think mine is quite bad but it’s quite mild compared to you. I’m not sure how much height I’ve lost. It was three inches after the first three breaks but nobody has measured me after the last four breaks. It’s a horrible thing to live with. I slept in a recliner the night my T12 went. I couldn’t even walk to the loo. I went into hospital for twelve days with that one. I was flat on my back most of the time. They had to bring me a bed pan which was embarrassing because it was usually a male nurse on. I remember them bringing me food and the nurse trying to raise the bed head and I told her No! She couldn’t do it as it hurt so much. Eventually towards the end of the twelve days I was sitting in a reclined position and I could just hobble to the bathroom. They tried to walk me to a chair and I just couldn’t do it. I couldn’t bear my weight at all for about nine or ten days.
J I had one Alendronic acid and was so sick they didn’t give me any more. I’ve got a very sensitive stomach anyway. I think AA is the cheapest and first port of call but it doesn’t suit everybody. I’m now on Denosumab injections every six months. My fist two years was on Terraparatide.
I’m so glad you could get help. It’s miserable to not be able to do much. I hate having a cleaner in and getting my ironing done. I’ve always done my own and nobody does it like we do. Do they?
I'm on Terraparatide now after a year on Denosumab. Your age would not stop you from getting medial branch block injections and I would recommend them to everyone.
Hi, it has been so useful reading the threads to your original post Looby60 because, many answers have been answered for me! My VFA imaging showed multiple thoracic and lumbar vertebral fractures including from T10 through to L3. I was originally 5.4" then I went down to 4.6" (I had a major operation) but with determination, and walking every day, I have managed to gain height to 5.0" but no more.
My back still has a small curve. I've progressed to walking with a 3 wheeler walker when walking to the shops and exercise around the park but can walk around the house unaided now. I am able to do small chores now but cannot bend down to the lower cupboards in the kitchen. My back aches after a while which is when I have to sit down - preferably lying on the sofa!
All this was brought on by the drugs/steroids, age and risk of osteoporosis 2 years ago as none of this was present in my scan in 2019. I have to accept it and it's good to know that, my little round tummy is now normal! I thought it was just me too. I don't have a big appetite and when I was very ill for 5 weeks with that dreadful flu, I lost 5lbs in weight which was not good as I need to maintain weight.
I'm now back to 7.10lbs. I did originally think that the round tummy was giving me the back ache with the excess weight but I still had the backache with the weight loss. It's not horrendous but a dull ache which is constant and needs resting.
You sound like me with the constant ache that gets really bad if you do anything. I have a recliner for times like that and I recline it right back. It’s the only way to relieve it. I really must get walking. It’s the one thing I’ve stopped because my back aches when I walk very far. The pain makes my breathing bad too. My little round tummy has grown big where I’ve lost height. I’ve had theee people say I’ve put a lot of weight on but I haven’t only a few pounds. When I think I used to be 5 ft 2 or 3 inches and the last time my height was measured it was 4 ft 11 inches. Probably more now. You’ve given me inspiration to get myself walking again. Thank you for the nudge.
I think we all need to be able to talk about our experiences good or bad and this medium is perfect for this . Anyone who hasn’t suffered like we have cannot always understand . Oh osteoporosis is common until we or the person saying it gets the complications with it .
I remember my dr saying to me that osteoporotic fractures are the most painful . He wasn’t kidding lol .
To have your whole independence suddenly taken away and having to rely on others is a huge life change . Do we give up ?
No we stay positive and keep striving to go forwards . Every small step or thing we can do on our own is is a big hi five 👍
Yes! Big Hi Five!! I live in a retirement block which is really warm and cosy. People in here have doubted I have anything wrong because I can walk and talk. Somebody obviously had been talking to others as two people said to me well how can you walk with back fractures. What I should have said to her was well how do you talk with your false teeth. I must admit it did make me feel bad that I’m not believed. I agree I’ve had my independence taken away. I can’t do much at all now.
I forget the pain when I walk with my wheeler and music on. I used to be so fit before all this happened and was a regular gym person starting from my 20s, 30s, 40s and 50s with no underlying health problems (which played a good part in my recovery) and then I woke up one day in 2019 and needed a liver transplant in 2020 due to Sarcoidosis and along came Osteoporosis etc.
Walking every day (apart from hospital appointments and torrential rain) and the flu recently) is something which I enjoy and not a chore and has helped me straighten up and build strength as I was wheelchair bound last year. Small baby steps at a time.
I'm not giving up yet and after having my quick nap, I'm now off for my walk.
Oh no! The dreaded Sarcoidosis. My Mother had that and she was as I expect you are treated with steroid. The bone wrecker. That’s what finished mine. I went to keep fit with a friend once and I must admit I got quite good at it. Then my friend dropped out so I stopped as I didn’t want to be out on my own at night. Well you’ve said about walking as well.. I was getting ready to go out but then the dreaded pain started so I came in to my recliner to rest it a minute. I’m going out in a minute for half an hour.
I’ve been out. I went to the butcher just down the road from me and I went to Edinburgh Woolen Mills and bought a Christmas present. I can walk well now but don’t like using my arms for anything. I cleaned my teeth earlier and had to sit down before I’d finished. I have to do things in fits and starts.
I still can’t carry a handbag and I find pulling my trolley eventually makes my back ache. I could do with a motorised one and hope it wouldnt run away with me. 😁😂🤣
Hubby got me early Christmas present a mobility scooter . It helps me a lot on bad days to get out yaay . I cannot go out alone anyway but at least I don’t have to worry about not getting fresh air lol
My Son offered to get me one but I’m not ready yet and I need to walk. Besides I’ve got a car to drive me to the shops. Have you tried the Ostoporosis Group. I’ve rang them a couple of times and they have been very helpful. More helpful than any Dr. They’ve just more or less left me to my own devices.
I haven’t but I will give them a go . I do walk around as much as possible but I can only walk a little outside with my sticks then need to rest . Plus back gets painful and I have to stop .
I’m like that if I walk too far. They do say to walk if you can as it strengthens the vertebrae. Hence why I want to walk. I want to get back to a better fitness and be able to do more. I feel that because I have pain I want to sit and rest all the time but the Osteoporosis Society say exercise. Obviously I don’t know how long you have had your fractures. I’ve found with mine got a little better with time. I only had my last four a few months ago but I think I’m doing well. My T 12 is severe but what that means I don’t know. I think the rest are hovering. 😁
My T12 is also severe . That’s the one plus L5 give me most trouble . Every movement has to be cautious . I can’t dress myself without help etc . But yes walking I do as much as I can . No great distances though . I’m unfortunately stopped over so that doesn’t help .
Where is L5. Is it a bottom vertebrae. They say that’s the worst ones if it is. I’ve been getting just a little aching in the bottom vertebrae. I was only thinking the other day that I hope they are not going. I think the stooping is what they call a kyphosis. The Consultant wrote on my discharge form that I had a slight kyphosis with my first fractures and now a worsening one. I try to keep upright but I know my back is bending. I’ve looked up my fractures I had this year and they are T 12 which I know is serious then T4 T5 and T6. I can’t find out what my ones from three years ago are. They are up near T4. T5 and T6. I know T12 was one of them. I will ask next time I speak to the consultant. I think it may be six I’ve got not seven as T12 was In my first fractures although it has worsened over the three years getting really bad this year.
Do you have a carer to help you. I’m lucky that I can still manage to dress and shower. It’s a struggle but I do it. It’s lovely after your back aches so much to just sit down ( for me in a recliner ) and just chill out until the pain goes off.
L5 I beleive is the lower lumbar near coccyx I think . Nasty little thing . My carer is my poor husband it was a bit of shock for both of us . Had only been married a year . I have copies of both my MRI scan results plus I managed to get a photo of the difference of the 2 .
No wonder you are in so much pain. I was watching an operation on TV the other night where they removed a vertebrae that slipped. It was a very delicate operation but they showed the man walking at the end of the program. I suppose with osteoporosis they wouldn’t even consider something like that so we must go on and suffer. I’ve got an XRay copy of my T12 from three years ago but wasn’t offered any after and I never asked.
You are very lucky to have a Husband. I lost mine nearly eight years ago. I still miss him now.
I’m so so sorry to hear this . Not sure there is a facility on here to private message but if there is and you would like a chat please pm me . More than happy to compare our ailments . Talk about weather or whatever you like ok 😊
That’s ok it was just a thought . Can always follow progress on here no worries . Almost my bed time up at 4 most mornings lol . Speak soon and take care ok 😊
Hello ladies - lots of reading! Yes, Mavary, I was put on Steroids at the beginning of my treatment which lead to the exacerbation of osteoporosis and Glaucoma and cataracts which I've now had both eyes operated on. How much I walk depends really. I've looked at my saved steps and distance and the longest can be 4-5 miles and the shortest just a couple of miles - with my walker.
It's much easier with either music or chatting to friends or listening to a podcast with your headphones on as you don't really notice the time or distance!
I didn't knot T12 is serious. In fact, I didn't know very much about the fractures I have as no one has really talked about it to me except offer me pysio which I took up and have slowly worked up the ones selected. Walking backwards was a real eye opener and lots of wobbles and falling off the 'line' but I can do it now.
I'm off out again, and its a beautiful sunny day. We have to keep going and my goal is to be walking next year (not miles and miles) with no walking aide but after talking to my OT, maybe with a back brace to help but not to rely on, I'm going to give it a good go!
Anything from T12 down is the worst ones to have. I’ve had my cataracts done too. That was after the steroids I think. Hmmm! I’ve never even thought about that. I’ve got eye problems anyway. I’ve got dry macular disease.
I’ve been out walking the last couple of days and I must admit I can walk a bit further now with no pain.
I’m not sure I couldnt walk four or five miles. Good on you for doing it. I will definitely be more of a Percy and Persevere. I’m not ready to give up yet. It’s washing up that kills my back more than anything. My kitchen isn’t big enough to take a dishwasher. I can’t have an under counter one as my cupboards are too low for it to go under. There is one I can get but you can’t get parts for it if it goes wrong. So my Son said he wouldn’t advise it. They are a couple of hundred pounds so it’s probably not worth it.
Well I was feeling sorry for myself but after reading all these posts I'm a lot better off than I thought as most of you are going through a terrible time.In 2018 whilst lifting my suitcase onto the scales at Manchester airport on my way to Hong Kong a terrible pain seared through my lower back. I managed to get on my way with help but was in agony all through the holiday. Took me almost a year to get a x-ray which showed a compression fracture on my L2 then a dexa scan in April 2021 got me a t score of -3.9. Since then I tried AA but side effects were horrendous with my stomach as I have a hiatus hernia already and really bad reflux and pain so had to stop that. I've just had a gastroscopy so awaiting results. I've been referred to the bone health clinic to discuss the yearly or 6 month injections but no appointment yet. I'm now starting to get pains in other areas of my back but no luck in getting to see a gp. My endocrinology doctor has taken over my osteoporosis care now as I have subclinical hyperthyroidism and a multinodular goitre so should be hearing something soon. I had a fall a few months ago and fractured my shoulder. I still don't have full use of that arm and physiotherapist has told me I never will get full use back. I take cocodamol for the shoulder and back pain which takes the edge off. Luckily I'm still able to walk but not like I used to and I'm very nervous of falling now. I'm 63 and overweight but struggle to get it off. Anyway I have a telephone appointment with DWP coming up for them to decide if I'm fit for work so something else to worry about.
Thanks for your reply, hope I get someone understanding for my assessment too. Don't get me wrong if I felt I was able to do a job I would but I really don't know how I would manage. I can't kneel down and if I do find myself on the floor for whatever reason I can't get up to a standing position without crawling to something I can pull myself up with and I know it's going to hurt when I do. I can't sit or stand in the same position for a length of time either because of my back.Oh well, only 3 more years to retirement age. Take care
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