Newly Diagnosed and So Scared

Hi

I am newly diagnosed with Osteoporosis. My T scores where quite scary especially my spine. I am 64, female. I have ulcertive colitis since 23 yrs of age, have graves disease for last 10 yrs. Thyroid removed 2 yrs ago.

Now had a DEXA scan, and this diagnoses. I am so worried, feel alone, scared of my future, how I will cope, and so worried about the medications.

I also feel now I have no purpose because as of 2 weeks ago and the diagnoses my life as I knew it has skidded to a halt. I am afraid of bending, of picking anything up, etc. The research of this disease I have been doing is so depressing as nothing looks good or hopeful!

Has anyone out there been through it, have this disease, have you any advice please?

Thank you

43 Replies

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  • Welcome Nothyroid63! Thank you so much for sharing your experience on this brand new community.

    Because we are just getting started not many followers will read your post this week. But please hang on with us and keep sharing your journey :)

    I am sure this community will grow fast and have others that can offer their experiences and advice.

  • Hi, I'm afraid I can't help with your questions, but I'd just like to welcome you to HU and this new community. Have you searched the other communities yet, I'm sure there are other communities for your other health problems. xx

  • Me too. I am only 51. I don't have any other health problems. I think, but I'm no expert, picking up, bending etc should be ok. Although I will be a bit more wary coming down stairs, standing on stools/step ladders etc. I think I will give up on standing on larger step-ladders whilst decorating and stick to standing on the ground/doing the bits I can reach. I only found out after breaking a bone in my foot (tripping out my back door) and being sent for a dexa scan. Starting medication next week.

  • Hi Karen, thankyou for replying. The osteoprosis is in my spine which is my worry. May I ask what medication you are starting on please because I am equally scared of the medication and side effects. Thankyou

  • I have been diagnosed with osteoporosis in my spine also. I have to go for a blood test tomorrow and then start taking calcium and vitamin D supplement every day and then Alendronic acid once per week. I haven't started it yet. I am starting it next Sunday morning - this most convenient time for me - and yes there seem to be side effects. I'll just have to see how it goes. How are you doing with your medication?

  • Hi Karen p1

    I have just read a post from you three months ago I have only just joined site and am waiting a scan .. Just wondering how you are getting on after your diagnosis ..

  • I'm fine. I haven't broken anything else. I make sure I am careful on stairs and slippy frosty pavements. I have signed up to do the colour run in May (5km) so will have to do some training when the weather gets warmer.

  • Well done you.. lovely positive attitude I feel so deflated and I have not even been diagnosed yet you have lifted my spirit 😀

  • Hi Karen, I also have to take calcium and D3 supplements, although my tests for these came back OK? I also have been given Alenronic Acid, but I have not taken it yet as I have other health issues I.e. colitis, Graves disease however they removed the thyroid so I am on Thyroxine.

    That's one of the problems with this Alendronic as that has to be taken on an empty stomach early morning - so has the thyroxine.

    The GP is no help, I have written to the other various clinics for advice but no one is replying.

    I am now going to TAI CHI as I have heard that's good. I am also going to nutrition specialist for advice.

    I know I have to take the meds. Just want to make sure its the right one for me.

    I hope you get on with it well. Please let me know if you don't mind.

    Thank-you

  • I wouldn't mind having a go at tai chi. Let me know how you get on. I don't have a lot of spare time as I work almost full time and have grandchildren and my mum who is getting older and needing a little bit of help now and again.

  • My first TAI CHI is on Saturday so I'll let you know. Could you let me know how you get on with the bone tablet please. I am retired so it must be hard for you working and looking after your Mum with the Osteoporosis. Have you definitely got Osteoporosis or are you osteopenic (sorry that might not be the right spelling.

    Please let me know if you have an digestive problems with the bone tablet.

  • Me too was diagnosed with Osteoporosis in my spine L2 L4 two weeks ago. I was prescribed by my GP with Alendronic Acid 70mg along with Accrette D3 and I am only 54. Had a slipped disk 6 months ago and still on treatment with my chiropracter every 6 weeks. Maybe you should ask help from your GP on how to manage your medications and help you set up a schedule on taking them so you have a pattern everyday?

  • Hi, sorry you too have this horrible disease. It is very scary indeed, two months on and I am still trying to come to terms with it.

    I did ask the Dr regarding my other meds but he was actually no help and didn't seem to care unfortunately. I am going back on Monday so I will ask again.

    I have it in my spine same as you. I am pretty scared about the medication though as it comes with many nasty side effects.

    I am going to a physio to learn how to move and exercise safely. Everything I was doing upto diagnosis I have stopped.

    I am sure I have given myself compression fractures.

    Hope you get on OK with the meds. And hope your back gets better soon.

    Take care

  • Hi

    I have had osteoporosis (early menopause) for 15 years now T score is -3.7 in spine L1-L4, hips are -2.8

    I have tried Fosamax once weekly and Risedronate once weekly two years on each one.

    I do not take anything now and have not for about 6 years (my choice)

    All I can say is you have to be more mindful of every day hazards than others that do not suffer this nasty condition.

    Just don't let it take over your life, you will gradually begin to learn what your comfort zone is in doing any activity.

    Hope this helps.

  • Hi , I have been treated for breast cancer and then diagnosed with OP (Mar 2015) Spine -3.2 and hips about -2.4. This does indeed show quite low bone density but I keep reminding myself that it doesn't say anything about the strength of the bones.

    I'm on Calcium &vitd and Alendronic acid. No side effects from either.

    I stopped a lot of activity after diagnosis but understand this is the worst thing you can do so I've been getting back to normal activities and adding Pilates for OP. I think one of the main 'rules' is - keep your back straight. No bending forward to touch your toes. Lots of knee bending is going on.

    I have lots of questions about diet but have not got any answers I feel convinced by yet. (I'm on warfarin - vit k blocker, and letrozole which is an oestrogen blocker - not ideal for bones!).

  • and if you aren't aware already these people are brilliant.

    nos.org.uk/

    Have specialist nurses and they will advise.

    Best wishes

    mars1bar

  • Hello, thank-you for replying. I am sorry you too have had a rough ride. My spine T score is 3.6 which yes, I now understand to be high risk, which is to me very scary indeed.

    Like you I immediately stopped all the activities I was used to doing, gardening, painting decorating, carrying heavy shopping bags, and stupidity bent from the waist many times. Not now! I am still trying to come to terms with it.

    I know that walking is good, and going to see physio to see what I can and can't do. Like you diet seems complicated so many different theories.

    I still have not the courage to take Alendronate because of the side effects, but I know I have too. The calcium carbonate does not agree with me, so have to find something else.

    I wish you well and thank-you for the feedback about the meds.

    Kind regards

    Jacquie

  • I was told a couple of months ago that I had osteoporosis, but just yesterday got my T-score and was happy to learn I am "only" osteopenic! During the intervening weeks I have done a lot of reading. I refused offers of OP medications as, frankly, I'd rather have bones like sponges than risk the side effects. Fortunately there are effective natural strategies, including the right kinds of exercise (walking and tai chi for starters, some people recommend certain types of pilates, etc.). And supplements are good. Advice seems to be a bit conflicting but the best I can determine is that we, of course, take Calcium and Vitamin D3, but we also need other micronutrients, especially Vitamin K2 (not K1 which has little help for the bones), adequate Vitamins A and E, the usual suspects like Magnesium and Manganese and others, like Boron. Some things we can get from diet but Vitamin K2 is nearly absent from the modern Western diet because of the corrupted food supply. I have two friends who moved from osteoporosis to osteopenia through natural means. One has slacked off and become osteoporotic again, the other continues to improve her bone density - she does Nordic walking and parkour, I'm not there yet! Hope you are coming to grips with this diagnosis. I was initially shattered, not to say crushed (puns intended) but now with my new regimen I am feeling a lot better and more optimistic.

  • "she does Nordic walking and parkour" - I've seen you mention an older neighbour/friend who does Nordic walking - is she also the one who does the parkour? Huge, huge respect!

    What sort does she does, if it's not too intrusive? And, where? I'm utterly fascinated. :)

  • My elderly neighbour is osteoporotic and I am sure does not do parkour! But my friend who inspired me that bone density could be improved naturally certainly was doing parkour for a few years, I don't know if she still does, and she is the one who told me she felt Nordic walking was most beneficial in terms of exercise to reverse OP. I didn't know there were different kinds of parkour. I've just seen pictures of people leaping over fences and running along ridgepoles etc.... Not being at all athletic I couldn't have done anything like that at any stage in my life. Certainly not since the fearless days when I was three! We live in Nova Scotia in what we not so lovingly call Halifax Regional Municipality! So lots of walls, etc., for people to scramble over.

  • No you don't have to take any osteoporosis medication if you don't want to. I never will. But you do have to follow a different, natural regimen in order to improve your bone density. Neither method is fast (bones grow slowly). You need to know that although the OP meds will usually improve the bone density as measured on a scan they are doing so by preventing the normal breakdown of old bone and reconstruction of new bone so that after a few years you become more at risk of fracture as your bones become more fragile. The non-medicine way will also (slowly) improve your bone density, but by helping the osteoblasts (bone builders) work more efficiently, not by stopping the osteoclasts (bone dismantlers) from doing their necessary job!

  • Hi, you seem to have the same mind set as me about OS medication.

    I had a fall several weeks ago and despite telling my GP that the subsequent pain was too severe to be muscular I was not X-rayed for 10 weeks. An L1 fracture was found and I was sent for a dexa scan. The results from this show normal readings in all areas other than my spine which is -1.8. The report said that this reading may not be correct as I have a fracture. It suggested lifestyle changes and said medication should be considered. My GP is very keen for me to begin alendronic acid 70mgs once a week. I did some research and was terrified by the findings. I would rather look at the lifestyle changes as recommended than take medication with such side effects. I know this is a personal matter and everyone makes their own mind up.

  • diagnosed with OP after hip fracture after fall over broken asphalt pavement a year ago (2016)discharged by surgeon in January, started AA late February 2017, took for five weeks and then stopped, horrendous side effects, I agree with your comments re building bone density the natural way, (always my choice) my surgeon indicated that AA also makes your bones harder over a period of time, which mirrors your comments. Seeing my GP later this morning to see what she advises. Apart from OP I am very active and healthy, the AA drained all my energy and made me feel extremely unwell and that's not living as far as I'm concerned

  • I see my comment above was posted a year ago. Since then I've had a follow up DXA scan and my t-score improved from -2 to -1.6 and they no longer recommend drugs. My doctor was most impressed and asked me how I did it! :)

  • Hi, that's great. How did you do it? Thankyou

  • Followed the advice in a post several above this one. ;) And when weather allows I do Nordic walking about three times a week as well as tai chi daily, and 10,000 steps a day one way or another. I also wear a weighted walking vest from time to time.

  • Hello just seen this site and thought I would like to ask a question

    First I am 64 year old man and I've been in lots of pain with rheumatoid arthritis

    for the last 15 to 16 years. And I've been on androlic acid just one tablet a week for as long as I've had arthritis.. I thought it was to help with the arthritic flair ups

    but last week I was sent for a bone scan ...and the lady doing the scan was totally surprised that this was my first scan.. Am I just lucky. Or just crap doctors in the hospital. They have just retired on mass... We have a new load now only been there two years and i haven't met new chap yet...... haven't had results from the scan yet but I don't think there's anything they can do about it. So we will just have to grin and bear it

    PS to the lady who's afraid of taking androlic acid don't be.... your stomach feels like stone when you first take them but follow the instructions and no problem

    drink plenty of water with them and sit up or stand up if you can for thirty mints after you take them and you will be fine Jim

  • Hi JJones,

    Thank you for replying, yes I'm the lady who is terrified of the Alendronate Acid tablets, and I have still not got the courage to take them. There are so many stories out there of people having tremendous problems to the point that they have to take more medication to counteract the problems the Alendronate caused. Have you had any dental problems caused by this drug.

    When you say your stomach feels like stone at first, how long does this last please? And did you ever find out why this happened.

    I thought you only had to be on the drug for 5 yrs?

    I hope your scan results are OK.

    Thank you

    Jacquie

  • I looked up how long one can take alendronic acid. A bit hard to find, considering how often we come across that five years maximum statement. One of the things that happens is an increase in atypical femoral fractures, a side effect that is mitigated by keeping the length of treatment to no more than five years, so maybe that's where that comes from. The longer one takes bisphosphonates, the greater the chances of side effects. And of course, as people here are saying, not everyone gets serious side effects. But some do. This is a choice only you can make, but I am confident you can make the right choice for you. All the best!

    medscape.com/viewarticle/73...

  • Hello

    I've been on alendrolic acid for at least 8 years never been told not to take them. I've never give them to much thought till I came across this site.

    I only take just one pill a week on a Wednesday. I take them the same time I do my methotrexate injection. I am also on quite a lot of steroids. And pain killers tramadol and anti inflammatory naproxen. To be honest will take anything they give me.. thinking its got to be worth a go and if anything upset me to much I tell them I've stopped taking them

    I take one 70mg tablet a week my stomach felt like stone for about the first two or three times. for about an hour . but i soon found out.. drink plenty of water sit up for roughly forty mints and all will be ok ...and no never had any trouble with my teeth

    only thing I can think of since reading about some people on this drug is I had a cataract removed from my right eye last month

    everyone in the hospital had them in both eyes and when I asked the nurse is that normal to have just one. She said its probably all them drugs your on

    But thanks to this site I will make a point in asking

    But thinking on what can you do. You've got to trust you doctor I just cant imagine my local doctor would give me anything that would cause me any harm

    but not to sure about hospital lot though they are all new so will take a while to build up trust I suppose

    Good luck with what you decide to do and I hope you feel better soon it seems to be a big worry for you I just seem to take it in my stride perhaps ignorance is bliss????

    PS

    please forgive any mistakes as I am new to computers the kids bought it for me for Christmas saying it will open up a new wold for me

    all its done is worry me sick

    Jim

  • Re cataracts - my husband (not on steroids other than what might be in his asthma med) has had cataract operations. They were several years apart. So eyes can change separately from one another.

  • Hi I've only just found this community. It is scary having osteoporosis isn't it? I'm 64 next month and I shattered my spine when a sliding door in a chemist hit me 2 years a ago. I only have one vertebra left that is ok. I'm on 20.mg of prednisolone a day due to a rare autoimmune disease. I also have behcets disease and a host of other things. After the accident I was more or less bedridden for almost 6 months. It'd been a long haul and I too was very frightened for my future. You hear of people and their 'journey' in their lives, well osteoporosis is certainly that. BUT, there is life after diagnosis. I lost 6inches in height and my life has changed forever. Getting the pain relief as best you can is the number one priority. I'm on morphine, lidocaine patches, and paracetamol. I'm highly allergic to many things including medications. So for me the pain relief I use works pretty well. I do get very tired though so it's important to rest when you need to. I'm realistic to know I'm not going to get better and I take each day as it comes. I'm on daily injections of forsteo which is a hormone type injection, as I'm in the worst 4% for osteoporosis. . We have a gorgeous new granddaughter who's nearly a year old and she's transformed our lives. We have her 2 afternoons a week. My husband has to do most of the work while I 'supervise'. She's cottoned on that she needs to sit still with me and we read and watch Mr Tumble . She knows I can't pick her up and that when I change her nappy grandad has to stand her up afterwards. They are so clever. I think she saved my life. You think life is taking you in one direction and then suddenly in an instant it all changes. But life goes on and although different can be good again. I was frightened of doing more damage but although I'm very careful and always use my stick the fear fades. Remember fear only breeds fear, its pointless. I use mindfulness which I learned about at the pain clinic at the hospital. It really helps. Live life to the fullest you can but be realistic at the same time. It's ok to have bad days, they'll go, I promise. Remember the good days they're important. They are what get you through this. I wish you a happy and fulfilling life. It's there waiting for you. X

  • Me! I'm 38. I've lost part of my career due to not being allowed to lift anything at work. I've been told to throw away my push bike... :( I daren't join in a lot of activities with my mates (go carting, assault courses etc) I used to be super fit and very strong. I enjoyed running 10K races fairly regularly (now I have been told I mustn't).....

    However I try not to wrap myself in cotton wool - I've had to make so many changes in my life, but most of the time I put my osteoporosis to the back of my mind, but just make sure I think about what I do before I do it. The fist few months after diagnosis are the worst, but over time you learn to live with it .

    I keep reminding myself that there are so many people so much worse off than me (I work with people with cancer and that helps me to remember). For now, just keep trying to smile, but allow yourself time to come to terms it it!!!

  • I just realised this was posted 2 years ago - oooppss! how are you feeling now?

  • Hello Lulet99,. Thankyou for your reply. I hope you are ok as well. Your outlook and positive thoughts are wonderful.

    I got a bike for my birthday 2 years ago then I got the diagnosis. Sadly I have not used it.

    I am so afraid of taking the drugs, I already have ulcerative colitis and no thyroid and graves. So take drugs for those, but so afraid of the bone drugs.

    I walk, eat all the healthy stuff and I'm so careful, but these past two years have been the most worrying, stressful and saddest I've gone through.

    It's, like waiting for the axe to fall, and I try to put it to the back of my mind.

    You are so young, and hopefully you can turn it round, I hope so. I find the GPS are no real help.

    Take care, and thankyou.

    I

  • My consultant won't give me any drugs as he says I'm too young and he will save them for WHEN I fracture my hip or spine! I'm not sure I'd want the drugs anyway as they are scary you are right! But it would be nice to think I was getting some active treatment rather than waiting for the inevitable. I love your analogy...waiting for the axe! I'm trying to live a bit more for the present and grabbing some opportunities when they arise, but it's hard as I have depression and lack of confidence from osteoporosis. I'm

  • Hi, yes I understand so completely, as my diagnosis of osteoporosis I too have suffered depression and lack of confidence. Noone really understands that!

    My beautiful little granddaughter was born 2 years ago, and I so want to look after her and pick her up, but I'm afraid, I mean I do pick her up but grit my teeth every time and hope.

    The joy of life was wiped out in that diagnosis because of the fear of pain, and deformaty which my Dr said will happen.

    Those drugs scare me to death, especially the jaw death.

    Take care my dear, and maybe, just maybe you will be ok. Xxx

  • i have 2 compression fractures in my spine i havnt hardly moved in the 7 weeks since i did them, i even sleep in a chair as its too painful to lay down, i too am depressed like ive never been before, i am so frightened of the future, the second fracture i must have done while sitting and that terrifies me even more, i wish i could get over the depression, i try to walk but im so frightened im going to fracture again my legs dont seem to want to work, im seeing a specialist in September and my GP said about a yearly injection, but i have chrones disease and dont tolerate medication very well, i just wanted to let you nothyroid63 and lulet that im as fearful as you both i fear il never be the same again and it fills you with panic dosnt it

    sending my very best wishes to you both

  • Hmmmmm, yes, I understand that entirely....I have had any chances of having children myself taken away.....well that's not quite true, but it would be dangerous for me to have them and I would not be allowed to rest feed, and as you say.... no lifting the baby as I have been told to avoid lifting over 7kg or just over 1st!

  • Thats awful Lulet99 im so very sorry to hear that, i can understand that you wouldnt be able to hold the baby, but what does not being allowed to rest feed mean?

  • Rest feed is breast feed - a typo.

  • Oh I am so sorry Lulet99 and Tracie Louise. To to told you can't have children because of this terrible disease is so heartbreaking, I'm so sorry. Tracie Louise, I understand your terror, and the depression is relentless. I have ulcerative colitis, and that's one of the reasons I'm terrified of taking those bone drugs. I'm already on 2 heavy duty drugs, and putting more into me scares me.

    But on the other hand, I think I'm not helping myself by refusing, reading up on those bone drugs is not light reading, and trying to stay stress free is impossible because of constant fear.

    I sincerely hope you get well, and get help, although help in UK is , well just not really there..

    Lulett as you are young have they tried to find out what is causing yours?

  • I walked 3 steps yesterday but today my back is stiff and hurts, ive been told not to lift heavy things, i have to twist in my chair to pick my lap top from the table thats beside me and even that hurts and everytime i do it im scared i will fracture more of my spine, yes i have taken steroids for nearly 30 years and thats what has caused the osteoporosis, i also wonder what gave it to Lulet99 at such a young age, there is no help in the UK my doctor dosnt help just says if i dont walk il have to go in a care home.....hows that for inspiration

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