my story

Hi everyone

I would be so grateful for any advice as i really dont know what to do and i am becoming so depressed, six weeks ago i stood up from the sofa and my back locked i couldnt move up or down, i had a spine x-ray at the hospital who told me nothing was broken it was just muscular and asked me to return 3 days later for a ct scan on my kidneys which i did this showed no problems with my kidneys but a compression fracture of my spine they said it was done in the last year as my kidney scan last October didnt show it, i had a kidney stone then, but no fracture, i will add that i have chrones disease i have been on steroids for 30 years i had a hysterectomy in my 30s and i dont eat dairy, my appetite is and has always been very poor, i was put on fosimax 10 years ago but couldnt take it, or calcium as they both upset my chrones disease dreadfully, now i cant walk i cant lay down to sleep i have muscle spasms in my back so bad they make my legs give way and these heavy feeling in my back it feels stiff like concrete, im frightened to walk in case i fall, i have to go for a spine xray next week in case there are more fractures, i have not had a dexa scan yet but have to see a specialist in September, im so frightened to move in case i fracture another bone so i just sit in a chair all day and night and the depression is dreadful, please can anyone help i dont know what to do anymore, ive never been given vit d or had a test to find out if my levels of it are good or bad, thank you in advance

77 Replies

  • Hi Tracey-Louise, I'm sorry to hear you are feeling so awful. I know exercise of any sort seems scary but if you could find a mobiity class near you it could help with your depression and fitness. I think they are funded by the health service, as we only paid £2. I went to one when I was really quite disabled and was very cheered by people arriving with walkers and other problems, and the instructor tailors all activities so that people can do some version of them safely, including sitting for them. Being alone will be making you feel worse. People were so supportive and lovely and it made the class feel like a friendly gathering.

    Good posture is very helpful for avoiding fractures in the spine- I have quite extreme osteoporosis of the spine and have been through the terrors of the idea of my spine crumbling and not being able to breathe properly etc. I move carefully and manage actions to protect my spine. Also, many people with compression fractures of the spine don't even know they have them, so building your strength and muscle tone is worth doing.

    Vit D helps with depression too, so if you can't get into the sun, get yourself some. Take it in the morning as it affects sleep if you take it at night I had a lovely orange flavoured oil I just dropped onto my tongue and it is absorbed there, so it didn't have to get through to my guts. I have coeliac disease or some extreme gluten senstitivity, so my guts are easily bothered and absorption is poor. I can't take calcium supplements or eat dairy- I've added sesame seeds to my flour as they are high calcium.

    To make things worse, the osteoporosis pill made me very now I'm concentrating on posture, careful exercise, and doing things that make me feel happy, as that is good for your bones too.

    Hoping you can find some way of feeling better. Please tell your GP how ghastly you feel, and if the first one doesn't listen tell another. You can ring for a chat so you don't have to leave the house to see them.

    Wishing you well.

  • oh- Tracie-Louise, just noticed I spelled your name wrong, so sorry. people always get mine wrong and I know how annoying that it.

  • It's fine, im just so pleased to see some reply's thank you again

  • Hi LoisParker

    Thank you ever so much for your reply, ive today been trying to move about a bit with a trolly but after the first few steps i lose my nerve and try to get back to my chair, my legs tremble so badly, and i think they are weak from not walking, im sure alot of it is worry about the future, i used to run about and do my housework etc its such a shock to realise you will never be the same again and probably never be able to do these things anymore, i have told my doctor how i feel but they just say anti depressants which as im sensitive to most drugs i dont really want to take, you have done really well with managing, maybe it will take time for me, this has blown up and is the only thing i can think about at the moment and every day im crying can't eat or sleep, i know it sounds pathetic and thats how i feel, i wish i could find some courage to carry on

    my very best wishes to you LoisParker and thank you again so much

  • I understand. Tiny things might help. Start working on hand and wrist exercises. Do some pelvic floor squeezes. Sew on a button. I find the small successes can help stop a slide into dispair or help you climb back out. They don't solve the big problem but can help you feel you have some control.

    The other thing I found helpful is the actipatch- buy them from chemist. You can wear them 24hrs a day and they help with pain and inflamation and I found they helped me sleep without medication when my pain was bad. I ended up with stomach ulcers from the meds so needed an alternative.

    Do you have anyone nearby who could visit?

  • I like your sentence "Tiny things might help", LoisParker.

    Setting little targets for the day may help you, Tracie-louise. If not achieved try again the next day. Feel proud of yourself when you do achieve the target you set yourself. Keep a diary. Always helpful to look back on, we forget and re-reading a diary we see our little improvements.

  • Thank you Kaarina, i am trying but it all feels so hopeless at the moment

  • I am worried/concerned about you. Because you are not moving, are not eating much, you have become very weak and so when you try to move you are shaky etc and panic. Are you definitely against trying any anti-depressants even for a little while, just to get your mood "up" a little? Your doctor is aware of your crohn's so would prescribe something appropriate. I am not sure that paracetamol will be helping your mood or mobility much. Try to think about now, in the present, not worrying about the future. Have you any support at home with you?

  • i have carers morning and night to help me wash dress etc nd they get me cornflakes or something on toast which i do eat and they make me a cup of tea, do you think i will be ok? yesterday i had toast and then spaghetti on toast so i am eating and i also had some fruit but its hard work eating it, its the depression and the panic about moving thats not helping i have lost all confidence, thank you for the reply i really appreciate it kaarina

  • Hi Tracie-Louise I'm so sorry to hear about your situation. I have had two bad bouts of depression, I understand the loss of confidence and lack of motivation. Even something very small can feel like a marathon. My brother helped me to regain some confidence by encouraging me to do things I had previously enjoyed. Do you like plants? I got a lot of pleasure watching things grow... I bought myself some cress seed because it grows so quickly!

    Have you tried liquidising your fruit? I have massive dental problems caused by my osteoporosis and I find I have to purée quite a lot of things. To be able to eat them. Tinned fruit is much easier to eat too!

    And just remember there are a lot of us on here who are probably thinking about you and want you to feel better!

  • Hi there Lulet99

    The depression is awful isnt it, i had an x-ray last week on my spine and there is another fracture a new one well i have hardly moved in the past 7 weeks so how on earth has it happened? its made me lose even more confidence now, have you had fractures, are you almost back to normal now, i do eat fruit as its quite easy to get down and its nice, thats a good idea about the growing things too, can you get about ok now? thank you so much for the reply, i find it really helpful to chat on here

    sending you my best wishes and take care

  • Hi. I'm lucky, only one fracture so far....a rib. well one that wasn't caused by things that would make anyone's bones break! Have you considered trying those antidepressants? I know they aren't nice, and I tried five sorts before I found one that suits me. But I honestly believe it saved my life! Do you like scrabble? I play scrabble on an app, it's lovely as I'm playing areal person so it makes you feel good when they congratulate you on a move commiserate on a mistake, or just play!

  • I have chrones disease and most tablets really upset my tummy so i try not to take them, i think i keep breaking a rib it hurts when i stretch over and i get the muscle spasms but it usually settles in a couple of weeks, i cant walk though and have sat in this chair for 7 weeks now it frightens me that il never be able to walk again

  • That's awful..... have you tried ringing the nos nurses for help and advice?

  • Yes i have rung them

  • and thinking back to my diagnosis following wrist fracture I think your response isn't unusual- so trust that you will start to feel better and regain your sense of self worth. I came across lots of stories of people who stayed in and cried for days feeling they had lost themselves.

  • Thank you LoisParker today i tried to stand and my legs wont hold me up, i seem to be sinking deeper into despair its awful, its been six weeks now and im nor further forward in fact i was doing more at the start, i do have carers who come in morning and evening, i just cant see any positives at the moment, im sorry to be so down and negative all the time ut i feel like my life is over, what if i never walk again, thats all i keep thinking and it terrifies me

  • oh Tracie-louise, Im so sorry to hear that. I do think you need to ask for an urgent visit from someone to talk about your future mobility so that you can get a clearer idea of what is possible. I am not at all medical, but I did read about spinal fractures as I was so worried about them I didn't even let myself curl up in bed or look after my newest grandchild. I found that many people manage to do quite a lot even with several and after a while I calmed down, though I know it is different for me because my fractures were wrist and ribs and they are less scary.

    I do think it is excellent that you found the energy to let people on this site know how ghastly you feel.

    If you can manage it I suggest you ring the gp tomorrow and cry down the phone at them until they do a visit. Not helping you to understand what your recovery path is is awful. If you knew what to do to help yourself, and if you knew some idea of when to start feeling better you would be able to cope more easily. If there is anything I can do to help please let me know.

  • Hi LoisParker

    Thank you for your reply, i had a visit from a GP last week, he said i must move about start to walk to help with my recovery i told him i find this difficult, he felt my back and said its muscular where the pain is but he also said when i have the spine x-ray that will give them a clearer idea of how bad my bones are, its not a dexa scan though just a spine x-ray, everyone i have seen including physio have told me to move no matter how much it hurts they all say sitting here will do nothing to help and it will in fact make everything worse, sadly i have lost all my confidence, it does hurt when i walk but the panic i feel is awful, one day i was running up the stairs putting up curtains doing my housework etc, the next day my back locked and i could do nothing, and the shock seems to have taken over, im actually a bit worried about the x-ray too because it was a ct scan that picked up my fracture the first x-ray i had they said there was nothing wrong, i just want to thank you for your kind words and information, it helps so much to be able to get my fears out

    my very best wishes to you, and thank you again so much

  • so, try the actipatch. best thing Ive found for back pain. Being able to wear it continuously is a great help. Best wishes. Im sure you will learn more shortly

  • Yes i will try LoisParker thank you again for your advice and help i really do appreciate it

  • Good morning Tracie-Louise, hope you got a bit of sleep. If you are going for another spine xray this week it would make sense to start writing down the questions and fears you have. I find when I am at the doctors/hospital I can forget to say what I meant to. Remeber that while this is brand new for you, the staff have seen many people with your issues.

  • Hi LoisParker

    I have had the results of my spine x-ray there is a new fracture, how on earth that happened i dont know as ive hardly moved for the past 7 weeks so now im even more worried, it feels never ending, i hope you are keeping well, my very best wishes to you and thank you

  • so sorry to hear that. Did the doctors give you any idea what you are supposed to do to manage this? When I read that you could frature just turning over in bed I couldn't imagine how one was supposed to do anything. My husband, who is a retired doctor, says sometimes fine fractures don't show when they are new but do show up on scans when they start healing- maybe the new one was part of the original injury.

    I do hope someone is giving you the support you need, both for your physical health and your social needs.

  • My doctor said i just have to keep taking pain relief regular and to keep moving, i am struggling to move though as when i do it makes me have muscle spasms i told him this and the physio but they say however painful it is i have to move, can you actually break every bone in your spine, and what happens if you do? i actually forget and lean over and stretch to pick something up i supose its because you do it for so long, and then il have a muscle spasm and then i worry ive broken another bone, the physio said it was a small fracture on L2 if that makes any sense to you? i dont know if its anything to do with the fractures but i keep getting ths feeling in my chest like theres no room to breathe, i have lost 2 inches in height, i was 5ft4 now im 5ft2 hope you are well, wishing you a fab weekend :)

  • i am really frightened the pain hurts im tired and worry myself stupid that i wont recover from all this i imagine my spine all crumbled and me having this pain forever and im also worried that if i walk il have more fractures

  • Hi your bone density will improve, the treatments work, rest up, you will forget about this break in time, its natural to be fearful you will get through it, you are already on the way good luck x

  • Hi there kcoman

    Im not having any treatment yet, i have to wait until September when i see a consultant at the hospital, my doctor hasnt even given me vit d he says i have to walk outside in the sunlight and i cant walk

  • Hi Tracie, you can buy Vit D capsules from Boots the chemist if your doctor is being unhelpful. You are also entitled to a blood test to find out your Vit D levels if diagnosed with OP so perhaps you could ask your doctor about this.

  • when I first got my diagnosis I used got a device called a lumolift (my christmas present) which reminded me everytime I moved my back off of vertical or whatever angle I told it I wanted. It took quite a while before I naturally held my back straight all the time. Remember those films of girls walking around schools with books on their heads? Thats what you need to think of.

    I expect the anxiety is making it very hard for you to breath. While you are sitting with your back supported can you expand your chest by moving your shoulder blades back and down and lifting your head as if someone was tugging your hair at the top of your head? Not letting your chin stick out. You could do breathing exercises without moving as that sounds like a good first step.

    when I broke my ribs and it was ferociously painful to breath I squinched everything up keeping very still and it produced lots of other problems. Small controlled movements and keeping your ribcage moving is really important.

    The other thing I like to think of is the way very old ballerinas move when I see them interviewed on tv. They move very smoothly and slowly with that head up but chin not sticking out....I try to move like that.

  • Thank you there are a few things there i could try, i tend to slump in the chair as it sometimes helps with the pain, i dont know why and i keep my feet up on a stool as one foot is swollen huge, the depression is awful i cant seem to come to terms with all of this and its the not knowing ie will i fracture again if i move will i ever be able to do this again do that again, its an absolute nightmare, i will try the exercises you have told me about, and i want to thank you so much for your support, it really helps me, are you pain free now from your ribs?

  • yes, ribs healed, ended up with frozen shoulder first one side then the other after the ribs healed, probably not helped by my being so still. Just had the metal plate out from my wrist (the original fracture) and feeling much better.

    If you are slumping in your chair you will be making it harder to breath. Use the back of your chair to press into to keep your back muscles working. I always nag my friends to do this when they are driving to stop them getting that stooped over look which is so bad for your spine. So, even without moving out of your chair there are lots of things you can do to feel you have some control, which is so very important for you at the moment.

    Wiggle your toes too. Keeping the blood flowing properly will help reduce the swelling. If you have the tv on, then do a little exercise like these everytime there is a commercial break of change of programme. You need it to to be as easy as possible to remember as if you are depressed anything feels hard to do.

    You can work your muscles without moving by squeezing them, like tensing your bum muscles, holding and letting go. All of these tiny things will help your body get fitter and help you not feel so despairing.

  • Im so pleased you are feeling better, ouch frozen shoulder is awful isnt it, but at least you are away from all that awful pain and managing and thats the main thing, thank you again there are some brilliant tips i can try and i will do, it seems everytime i move a have a muscle spasm but i think thats because im not moving enough maybe? my back feels like concrete and so stiff, i smoke and i have cut down on that alot, although when i first found out about all this i smoked like a chimney for days, no good i know, i do those ankle circles and thats a brilliant idea to do them when the ads come on, thank you and i will wiggle my toes too, im really grateful for your help thank you again, do you have pain in your back at all, or does the pain just come if you have spine fractures?

  • I don't have spinal fractures - though when I looked into this I discovered that 30% of people with spinal fractures don't even know they have them. It clearly varies a lot how much disability and pain they cause. I just have such low bone density in my spine I panicked at the start.

    I know it is hard to stop smoking at the best of times, but that does make your circulation worse, so well done for cutting down.

    I hope you can find at least a few minutes pleasure in your day.

  • Thank you so much yes i read the same thing about spine fractures too most people dont know they have them but have to have an x-ray for another reason and then they find the spine fracture, do you take medication for the low bone density in your spine, or just managing diet and exercise? wishing you a lovely weekend, please stay in touch and thank you so much again for all your help

  • I was prescribed calicum and vit d and Alendronic Acid. I stopped the calium pills as they made me feel jet-lagged all the time and not sure where my feet were, and a year later I stopped the alendronic acid as I realised it was making me very depressed. Took a year to get over that side effect. I spotted the problem when I was looking after my mother just before she died, and I let myself not take the pills while I was away to save trouble, and realised I was was feeling more cheerful every day even though everything was emotional and difficult. So now I am managing with posture, exercise, and I've altered my house to reduce risk - for example the dishwasher and the washing machine are now up on plinths so that I don't have to bend to use them. I am super cautious about carrying weight and especially making sure my back is in a good position at all times when doing things. I work with kiln formed glass as my hobby, and so I do lift things and reach for things but just take extra care about how I do this.

    when I first read up about osteoporosis I panicked about the terrible time I was going to have as my back crumbled...I think that is quite normal as a response. Now I have decided my fear isn't going to steal my life.

  • I really admire your courage and attitude, i wish i could be like that its so inspiring, i always forget and stretch to get a cup of tea and ouchhh, if ive fractured my back the second time just sitting down what on earth will happen if i start to walk about and move, i have stood up a few times today and my back sort of sticks halfway up and jolts really hard its so painful, and today ive got a really bad cough, so im trying to cough gently if there is such a thing :) i was reading that most people with osteoporosis go to work and do most things they just have to take care a bit more, i think if you have good support from your GP it helps, mine told me the other night if i dont start to walk il have to go in a care home, thats the last thing i want and of course it just made all my worries feel worse

  • I've had time to get used to this. Coughing gently is certainly a hard thing to do. Press your back into the chair so your spine is supported and then cough - that will help you use your lungs properly with more safety.

    I also had really bad joints (couldn't lift a cup of tea) years ago before I realised that extreme gluten intolerance was causing my health issues, so I've had more practice at being very careful than you.

    Just take each hour as it comes and try to have a happy thought about something nice- that's a muscle you dont want to loose!

  • yes i agree, i was diagnosed with chrones disease when i was 21 and lactose intolerant too plus so many other foods irritate it and also medication, its not been easy but i somehow managed but this is a whole different fear, if i lift my tea cup and its full my hands shake and it honestly hurts my back, and my table is at the side of my chair so i have to twist while holding my lap top to place it on there when im not using it, that hurts my back too, so many everyday things ive taken for granted and its not until you cant do them that you realise, also my chair is very squishy and when i sink down into that it hurts, ive rolled up a blanket to sit on now so it lifts me up a little bit, and put a v cushion at the back of me, yes i was reading about gluten intolerance just the other day and there was a huge list of symptoms painful joints was one of them and i think its the same with lactose intolerance, i think you are right in saying take each hour as it comes, im sure worry dosnt help with any illness but not worrying seems to be easier said than done

  • if you are sleeping in your chair and it isn't supportive during the day, could you afford to rent a proper rise and recline sleeping chair with good back support? I rented one when I broke my ribs as I couldn't use a bed.

  • I will look into that what a brilliant idea :) i didnt think about renting, thank you

  • I am so sorry to hear this, you are going through the wars. You will have a better idea of things once you have a Dexa scan which will show your bone density, I had mine and was finally diagnosed. Once you have this information your GP should give you a proper diagnosis. You should hopefully be referred to pain management, I have found you really need to push for help, and if you are offered any, please take it. At the same time, you must discuss your depression, it is paramount in your recovery to control your lows and get any psychological help offered as I did. Depression is the hard one, mine is under control and I find it easier to deal with the other problems. Try to find someone you trust, a family member or a friend to talk to. You are not alone, good luck and stay strong. Phillip.

  • Hi Phillip and thank you for replying, i have tried to discuss my feelings with my doctor but they wanted me to have anti-depressants which i didn't really want to take, having such a sensitive stomach with the Chrones, it has taken over my life and i am so tired with it all, my back feels so stiff like its concrete and im sure its because im not moving, although i did a few steps earlier with a trolly, does the depression make the pain worse? i ask this because thats what my doctor says and also ive seen a Occupational therapist who has said the same, how did you deal with the depression? and did you find that the pain eased once the depression lifted a bit?

    Thank you so much for the reply Phillip, sending my best wishes to you

  • In answer to the depression, I did take antidepressants for quite a while, they stopped when I was taken into hospital and was not given them by mistake! I had a serious reaction to the withdrawals so one to be aware of. I now still suffer from depression but have a lot of psychological support which helps me control it. The balance is hard but using positive thoughts and awareness of my pain I am able most of the time to push the pain into a position (like a filling cabinet) and move on slowly to other tasks like making a tea. I take drugs for anxiety (diazepam), it is important to enjoy any achievements you achieve such as a few steps. I can only do so much then have to break. I have several problems, pancreatitis, stomach and spleen and other bits removed, as well as the osteoporosis, also in hospital at the moment for my body to be rehydrated and iv food as I have lost so much weight. Again, I am using my filling system to get through it. I wish I had a better answer, avoid antidepressants if you can, you may have to start something suggested by your GP but it is very important to get some psychological help regardless. I hope this helps a little. Phillip

  • Hi Phillip

    Im sorry to hear that you are in hospital, i hope you feel better soon and are able to get stronger, you seem like you are going through it too, you sound very positive, i think you're doing great the way you cope with it all. please let me know how you are doing, and please take care

    Thank you for getting back to me, sending you healing hugs and my best wishes

  • Tracked-Louise, ditto, I shall be sending positivity to you, take care of yourself and remember, one little bit at a time! Phillip 👍

  • Hi Hindess

    I thought i would drop you a line to see how you are feeling now? hopefully you are back home and managing ok please let me know, sending you my very best wishes and take care

  • You are very kind, I am stuck in hospital still, they managed to give me an infection as well as everything else! Overall I am as well as you as as could be expected. I have a long wait before I can gain weight through TPN Iv but that is the key. My OS is still giving me a lot of pain, but I am not bed bound so do walk around a lot people must think I'm crazy! Thanks again for asking about me. I wish it were better news.

    How are you coping with things? Well I hope, how's the pain and are you getting plenty of support? I hope so. I will be sure to let you know how I do, l would like to know how you are getting on. Also are you keeping those demons at bay in your mind, keep thinking about number one. Sending positive thoughts and love to you. Phillip

  • Hi there Im sorry that you are still in hospital and that now on top of everything else you have an infection, thats the last thing you need with everything else you have to cope with, i think you're very brave in the way you cope, and the way you manage the pain, i know i wouldnt be as brave as that and you are managing to walk which is great news, i'm not coping well at all i can't get the demons out of my head, my doctor told me that if i don't walk i will have to go in a care home and i don't want to, i do try to walk and today i did 4 steps but that is it i can't seem to get any further, it's the way my life has totally changed that frightens me and i worry about my future being like this all the time, i was an active person looking after myself and now i can't even have a wash without pain, my x-ray has shown up another spine fracture so thats 2 i have now, i wish i had better news for you too, keep your chin up you are doing really well to cope, and rest plenty and take care of yourself, please keep in touch and let me know how you are doing, and thank you for getting back to me, sending you healing hugs and my very best wishes


  • Hello Tracie-louise, I'm so sorry to hear you're feeling so depressed. LoisParker and Hindess have some good suggestions, and you could also contact the National Osteoporosis Society helpline, Monday - Friday 9.00 - 5.00, freephone 0808 800 0035 or email Everyone says how helpful and supportive they are. I wonder if you need to wait till you see the consultant in September before having your DEXA scan, or if your GP could organise this for you before then. (My GP arranged one for me after an x-ray showed up bone-thinning.) I don't think you have to wait long for a DEXA scan, though like most things it might depend where you live.

    I can understand your anxiety about breaking more bones, and I think most of us find it really scary when we're first diagnosed with osteoporosis. But it's important for bone health to do weight bearing exercise, so I suggest (check all this with your GP first) that if you can get up on your feet and initially even just walk around the house, that will be better for your back than sitting all day long. Then if that doesn't cause any problems, try going for short walks outside, and gradually increase the length and eventually the speed you walk at. Don't rush anything, but just do it slowly and your confidence will increase with time. And do ask to get your Vit D and calcium levels checked. I was advised by an orthopaedic consultant to raise my vit D level to at least 75mmol/L (it was under 50 when I was first tested) and to take 800iu D3 in the summer and 2400iu the rest of the year to achieve this. It's also recommended to take Vit K2-7, which helps our bones to absorb calcium.

    I hope this is helpful and you can find some support and advice to get you through this and on the path to be physical and mental health. Let us know how you get on.

  • Hi there Met00

    Thank you for replying, i have taken a few steps today with a trolly i have lost all my nerve when it comes to walking as my legs are so shaky and my back is so stiff, but i will try again its so hard to deal with all this and it scares the life out of me in case i fracture another bone, it all makes good sense what you have advised like all the kind reply's i have had, i know i must try to get on top of things to feel well again, i can't help wondering if the pain and stiffness and spasms ever go? i have been told sometimes they do and sometimes they don't and thats what makes me feel so depressed, that il never be the same again, its an awful thought, maybe i will know more once i have the spine x-ray next week

    Thank you so much for the reply, sending you my very best wishes

  • Hi Tracie-Louise,

    I totally understand your fear of living your life as you used to. I've just been diagnosed at the age of 53. Having bloods done next week as my GP can't understand why I've got it at a young (ish) age. My world has turned upside down, I'm scared to go out and enjoy life. I've fractured my wrist which is why I had a dexa scan, and terrified of having further fractures. I know excercise etc is brilliant for bones but like you, am scared of hurting myself again. I'm a farmers wife and haven't been out to help on the farm since, (I fell over whilst helping on the farm). I'm suffering dreadful anxiety and depression over all this so I know exactly how you are feeling. Sending you love and best wishes. X

  • Hi Debbietilbee

    Im so sorry to hear this, yes its exactly how i feel too, i can't seem to pull myself together with it all, the anxiety and depression is awful, im 55 so we're almost the same age, i was warned the steroid treatment would thin my bones and i was given Fosimax ten years ago but i couldn't tolerate it, im having a spine x-ray this coming week and im terrified there will be more fractures there, i know thinking positive is the answer but i just cant seem to do it right now, please if you ever want to talk im here for you

    Thank you so much for your reply, sending best wishes and a hug to you x

  • Thank you, keep me informed of how you get on. It's good to talk to people in the same situation. I don't know where you are, if your in the UK give the national osteoporosis society a call, I've rang them in tears a couple of times already and they are so kind. Doesn't take the fear away but it helps to talk. X

  • Yes talking does help alot, please, you keep in touch too and let me know how you are getting on, thanks Debbietilbee for taking the time to talk, everyone has been so nice on here, sending you best wishes x

  • Hello again Tracie-louise. Well done for trying, but don't forget to check out with your GP as I've just given general advice but I'm not a health professional so don't know whether you should be resting or not with a compression fracture. I've just read on the internet that it's recommended to rest and limit your activities while the fracture heals. I've also read that you shouldn't lift, bend or twist, and I've personally been told not to bend my back forwards (like bending over to touch your toes) as this can put a lot of strain on the back and potentially could cause a compression fracture. You need to bend at the knees instead, but with your back so bad I'm guessing you'd probably struggle to get up again, so if you need to pick something up off the floor, see if you can get a special gadget to help with this.

    Pain can cause depression, and depression can make pain feel worse, so it's a bit of a vicious circle. Have you been prescribed strong painkillers? If it's any encouragement, the pain will almost certainly ease off with time, and if there is any mild lingering pain, although it's hard to imagine now, you do learn to live with that. A far as I know I've never had a compression fracture (though I do have a very low spinal T-score), but many years ago I slipped a disc badly and ended up off work for 2 months with it, so I sympathise with the pain you're experiencing and the concern that it might never get better. My GP was useless, didn't prescribe anything to help until I heard about prescription strength co-codamol and asked for it. I don't know if your Chrohn's disease limits what medication you can take, but if not, it might be worth getting back in touch with your GP to ask for this or something similar if you haven't already been prescribed anything. It can be addictive and less effective in the long-term, but very helpful short-term. I took a reduced dose (1 x co-codamol, 1 x paracetamol) as necessary and found it helped me sleep, which in turn reduced the pain because everything relaxes and healing is promoted while you're sleeping.

    Keep talking to people, here on this forum and anyone else who is prepared to listen, including the nurses at NOS if you're happy to get in touch with them. Take care and I hope you're soon on the mend.

  • Hi met00

    Everyone ive see tells me to keep mobile and when i say i can't because of the pain they say its anxiety making the pain worse, i am taking paracetemol for the pain as everything else upsets my tummy because of the crohns disease, i just sit here day after day i even sleep in the chair as i cant lay down, im frightened that the pain will never go and that i will feel this way forever, the depression is awful, i cant eat much either, i keep forgetting myself and stretch to get something and the pain is awful muscle spasms, i am frightened of all this i just can't seem to shake the fear off if that makes sense, maybe having the x-ray later this week will help because at least i will have an idea how bad my spine is and how many fractures i have

    Thank you so much for the reply i can't say how grateful i am to be able to talk, it does help, sending you my very best wishes, and take care you too

  • Hello Tracie-louise. I really feel for you, it must be awful for you at the moment, and I know when you're depressed it can be impossible to imagine things ever getting better again. Has your GP offered anything other than anti-depressants, as there are therapies that can help with depression too? Can you think of something you'd normally enjoy doing, like sitting in the sun and/or reading a book, or watching a good film? I know it's hard to concentrate when you're in pain, but if you can find something to distract you, often that in itself can relieve the pain, which would then give you some hope that things will improve with time. At the moment it sounds like you're in a vicious cycle of pain and depression, each one making the other worse, so finding something to break that cycle could be really helpful. It might be getting help with the depression, or something that gives some pain relief, or both.

    I hope the spine x-ray this week gives some answers. Don't forget the National Osteoporosis Society helpline too. Sending best wishes.

  • Hi there met00

    i think youve hit the nail right on the head i do need distractions to help with the depression my x-ray has shown another spine fracture a new one but ive hardly moved in 7 weeks so im wondering how it happened? if i can fracture sitting down i darnt walk as it will happen all the more wont it? have you had spine fractures?

    Thank you for your reply sending you my very best wishes take care

  • ive just read your replies again and see that you havnt had spine fractures but you have low density in your spine, i dread to think what mine is

  • Hello again Tracie-louise. You must be devastated to find out you have another fracture and it's no wonder you've been in such pain. Did your GP give you your xray results? I know there are issues with the NHS, but I'm puzzled why your GP doesn't seem to be pursuing all this faster. He/she could have arranged a Dexa scan so you have the results before you see the consultant in September (it might not be too late to ask him to organise this, depending on the waiting list in your area). If you're fracturing that easily he might be able to arrange for you to be fitted with a back brace temporarily, which would allow you to get back on your feet and start working your muscles again without doing any further damage to your spine. I definitely suggest you talk to your GP again, or ask for a second opinion from another GP. Do you have a friend/family member who could see your GP with you and make sure you get some answers? And do speak to the NOS helpline nurses, who should be able to advise you on lifestyle/activities.

  • it was my GP who gave me the results all he said was it was a small fracture and ive to keep on with the painkillers and keep moving he said my osteoporosis wont get any better until i go out and have some sunlight, i was actually crying and he said if i wouldnt work with him the surgery would think twice about looking after me and i would have to find another GP, he also said if the pain gets unbearable call 999 or listen to this....i would have to go in a care home as i still cant walk, i have been seen by a couple of doctors while this has all been going on and they all say the same, its muscular and could be caused by osteoporosis one doctor called it lumbago and theyve all said its worse because im anxious i have to see a specialist at the hospital in September and thats the earliest appointment, even my phsio says keep moving no matter how much it hurts, i am so frightened with all this, i imagine my spine all crumbled and me in this awful pain for the rest of my life, i cry all day and my hands legs shake all the time, i can never get comfy and when i try the muscle spasms start, it all feels so hopeless, do you think theres a chance i will get through all this, do people recover and lead a normal life?

  • Hello Tracie-louise. I'm really concerned about how depressed you're feeling and wonder if getting some help with that would also help you deal with the osteoporosis in the long run. I can understand you wanting to avoid medication if possible, but maybe you could ask about counselling instead. And do talk to the NOS nurses, they'll be able to help you come to terms with your osteoporosis and can provide some useful and informative leaflets. Also, I agree it would be useful to get out in the sunshine and wonder if you can sit in the garden for a while each day, rather than going for a walk? That would help raise your Vitamin D levels and is also good for depression. If you want to use a supplement, you can buy Vitamin D very cheaply (make sure you get D-3, not D-2), and if getting to the shops is difficult, there are are some good mail order companies like Healthspan and ZipVit which sell good quality products at reasonable prices. I try to get plenty of sun, but still need to take a Vit D supplement all year round (I take 800iu in the summer months when you can get Vit D from the sunshine, 2400iu the rest of the year). Do you know what your Vitamin D levels are? It's essential for bone health to have good levels - I was recommended to get my levels over 75mmol/litre. You'll have read other people's posts about other supplements too, but Vitamin D is probably the most important one to start with, then you can think about other supplements at a later date. There are also lots of foods which are meant to be good for osteoporosis, including nuts and seeds, greens, and (it's claimed) pomegranate juice and prunes! Your Crohns disease might rule all of those out, but it might be worthwhile doing your own research on the internet (google foods for osteoporosis, or osteoporosis diet, or similar).

  • ive never had my vit d levels checked, also i can't walk at all i can stand up and thats it as hard as i try my legs shake so badly i can't take a step forward, i have 2 fractures the second one ive got while ive been sitting down so if i walk im going to get more and im frightened of that, the pain is bad now and the muscles spasms take my breath away

  • I wonder if a TENS machine would help with the pain? I think you can borrow them on the NHS though you might need a referral to a pain clinic for that. I don't think careful walking would cause a fracture, it's bending and twisting that can do it, which can happen sitting down. Have you spoken to the NOS nurses?

  • yes i have spoken to them they were very helpful and very kind, but i just cant stop worrying about it all, i just want to be back to normal and i know i never will be, i dont think il ever walk again i really don't and that terrifies me

  • So sorry you are like this. However a little mobility will help. Its hard doing it but it will help you. You need to ask your go for an urgent dead scan. Have you got pain relief. Think you need to have your health nurse in to see how you are and she may recommend physio. I have wedge fractures in upper back. Had a lot of physio but now mobile. I take Fosavance for my bones. My rheumatologist told me good shoes and throw away my favourites overwork. A yogurt a day also good for you bone health

  • Hi suzuki

    Yes i have pain relief just paracetemol but anything stronger upsets my crohns disease as does anything dairy, im seeing a specialist in September who should arrange a dexa scan, but ive got to have an x-ray on my spine this coming week, i have seen a physiotherapist and im seeing him again also this week, my back is just so stiff i cant even lay down, i dont know whats causing the stiffness, but i keep thinking i cant just stay in this chair for the rest of my life, i try to move and i do walk a few steps with a trolley but im not doing much at all as its just so painful did you have the stiffness and i also have muscle spasms in my back

    Thank you ever so much for the reply, sending my very best wishes to you

  • I do have stiffness in the morning and also get bad spasms in my upper back. I also take paracetamol when needed. The physio can be sore but worthwhile

  • Please do give the nurses a call - they're at their phones now and the number is free 0808 800 0035. They've got years of experience, have helped many thousands of people and hopefully can give you information to support your journey. The opening hours are 9-5pm weekdays.

  • Tracie-Louise,

    I'm sorry to hear about your health. Long term steroid medication do have osteoporosis as a major side effect. In addition, many Chrohns patients often develop bone/joint complication (whether it's because of malabsorption of nutrients or because of gut inflammation). Coupled with no dairy in the diet of course your calcium intake would be very compromised. Often the calcium supplements given by the doctors are very poorly tolerated in the gut for many. What I can say however that you you can buy Calcium in many different forms and only some tend to have gut disturbance side effects. I could recommend you try and a few different ones (avoid Calcium Carbonate or 'natural' calcium as these tends to be from natural and cheap products which we can not digest well). In addition of course you need Vitamin D, Zinc and K2. You can get Vit D and K2 drops from Nutri Advanced. Get your levels checked, many people need to take a least double the dose to get any rise in their D levels. i'd also strongly recommend a good Osteopath to help with the pain as well as a Physio! Especially to help you with the most immediate pain and inmobility. If you live in London I can recommend someone amazing if you send a private message. Long term i'd also highly recommend seeing a Reg Nutritional Therapist (note - must be BANT reg) to help with prevention and nutrient absorption.

    Wish you better health soon!

  • Hi LinalbinNutrition

    Thank you for your reply ive read it a few times it helped alot i cant tolerate the calcium the doctor prescribed me and ive never tried anything else also i have a dairy free diet but ive always been a poor eater because of the chrones ive just found out ive got another fracture in my spine and it frightens the life out of me ive hardly moved in nearly 8 weeks and the depression is awful

    Thank you again for your reply sending you my very best wishes

    take care

  • I haven't visited this site for a while and I have only skimmed through the replies to your post - forgive me if I repeat something someone else has already said! Re your depression, have you tried St John's Wort. I have been using it and have found it has really helped to lift my spirits - before taking it, I was at an all time low but didn't want to take anti-depressants. Re your problems with lying down, rather than sitting in a chair all night have you tried propping yourself up in bed with cushions/pillows? When my fracture pain was at its worst, I had an arrangement with cushions and pillows, so that I was practically sitting up in bed, with my knees bent and a pillow underneath them, and pillows each side of me to rest my arms on. It looked like I was on the flight deck but it gave me enough comfort to sleep. In the end, we bought a triangular foam cushion from Amazon to help 'build' my bed. My husband didn't have much room on his side of the bed though!

  • Hi there Southessexgirl

    Thank you i will try propping up when i can get upstairs or on the sofa maybe, i had an x-ray last week and theres another fracture how thats happened i dont know as ive hardly moved in nearly 8 weeks i am terrified if i walk i will fracture more, how are you now, are you getting about ok and coping? i imagine this is it for me

    thank you so much for taking the time to reply sending you my very best wishes

    take care

  • I am so sorry you've had another fracture. The trouble is, as I found to my cost, once you've had one they tend to follow each other like dominoes. I had 5 lumbar fractures before my OP was diagnosed. They happened very easily and I now make sure that I always support myself as best I can before making any move! I have not had any further fractures since my diagnosis but recovery (in terms of mobility, strength, stamina, mood, acceptance) is still ongoing. My fractures were in 2015 but it is only this year that I have started to feel that I was getting a life back - a different life from before though. I was prescribed alendronic acid which didn't agree with me and have been on Strontium Ranelate for a year (fine but it's being discontinued) and I am hoping that my bone density is a lot better than it was 2 years ago. I am building up the exercise I do - and I always did something, even if it was just gentle stretches on my bed. You need advice on what is safe for you to do - have you seen a physio? Hydrotherapy is also very good and also very soothing and calming. I hope things get better for you. Good luck.

  • Thank you for the reply it sounds like you have really been through it it's depressed me so much I am having trouble coping with it sounds pathetic but I just sit in a chair all day feeling weaker and weaker I was told things would get better and I would get back to normal but after reading more about it I can see that's never going to happen I feel my life is over and out of my control I don't know what to do anymore to cope with it I've seen a physio twice seeing him again next month

  • Dear Tracie Louise

    I've just read through the posts to and from you. The last must have been July or August. How are you doing now?

    One thing crossed my mind. If we were in France, it would be quite normal to be offered medication using suppositories, which might work better with your Crohns. Your GP sounds as if s/he isn't very sympathetic - could you see another one, and also drop suppositories into the conversation?

    As far as moving is concerned, tiny and often is what I'd recommend, building up inch by inch. I've suffered from depression in the past. The house got in a terrible mess. Then one day I tidied a little space. The next day a tiny bit more. And so on. As I did it, somehow it got easier and bigger. Though I have to keep being good, no slipping back!

    Finally, smoking. Very bad for you in lots of ways, but I'm sure you already know that! Unfortunately, that includes bones! I used to smoke. I'd tried all ways. What worked for me in the end was despising both them and me, for being in thrall to something so damn petty as a llittle rolled up tube! I'm not suggesting that that's the way, just that it isn't just health +/or money/ smell. Find your own way!

    Do let me know how you are doing!

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