Newly Diagnosed and So Scared


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

26 Replies

  • 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.


  • 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.

    Have specialist nurses and they will advise.

    Best wishes


  • 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


  • 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.

  • 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.

  • 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


  • 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!

  • 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????


    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


  • 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 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

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