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Osteoporosis diagnosis

Posted , 4 users are following.

Sedge99
Sedge99

I have been diagnosed with osteoporosis at the age of 36. I have been in constant pain all year because I fracture my ribs regularly. I think the diagnosis has actually started to sink in now and I hoped people would be able to answer a couple of questions:

1) My doctor said it is curable yet no literature states this. Does anyone have information on this?

2) Any advice on pain management as I am finding it very draining now?

thank you in advance.

0 likes, 13 replies

13 Replies

  • susan79492
    susan79492 Sedge99

    Posted

    It can be improved but I'm not sure it ever goes away.  The meds will help prevent fractures.  What did you get put on for meds?  Did you have a DEXA scan?  Did you get your T scores so you know now how bad or not bad it is?  I broke my rib last year.  It is painful!  

     

  • Sedge99
    Sedge99

    Posted

    I have broken ribs for over a decade but they have kep re-fracturing since January so I'm so tired of the pain. My scores were -3.5, does that make sense? My doctor is at a loss currently because I am very young to get this (apparently) and all causal tests have come back clear. I am on Alendronate and vit D/calcium tablets as I have a history of vit d defficiency.
  • susan79492
    susan79492 Sedge99

    Posted

    Sedge,

    I'm 61 and my spine score is an  equally bad -3.3.  I did everythng right excpet I went through menopause.  Do you have early menopause or irregular periods?  I'm on Forteo (teriparitide)--it is the only drug that actually builds bone. I'll be on it for just six months and then go back to alendronate.  I hope it is working.   It is kind of a scary drug but worth asking about. Are you in the UK?  I don't know if the NHS covers that drug.  

  • Sedge99
    Sedge99

    Posted

    I am in the UK. My doctor has referred me to a bone specialist because they want to try to work out what has caused it so he is just starting a standard treatment until then. I haven't really been given much information, just the literature I have read. Unfortunately, the literature isn't really aimed at my age group. Is -3.5 quite bad then?
    • susan79492
      susan79492 Sedge99

      Posted

      That is exactly how it worked for me.  I broke my rib last autumn and then this summer my pelvis (wheelchair and walker/walking frame for 6 wks, yuck). I had to ask for the DEXA and that's when they found out about my OP.  Yes, -3.5 is kind of bad as is my -3.3..  Sorry. That is why we fracture so easily.

      So the GP started me on alendronate, but when I saw my T scores I asked for a referral to a bone specialist.  The specialist is the one who put me on Forteo.  The side effect that is scary, bone cancer.  It caused it in rats but it has not cause it in humans so I'll take the risk.  For me, I can't live being so fragile.  I like to hike and bike.  I think Forteo is for postmenpausal women though who have had a fracture.  I'm not sure about  somone as young as you are.  Anyway ask the specialist about it.

      Here is how to read the T scores:

      Scores between -1 and -2.5 indicate Osteopenia (thin bones).

      Less than -2.5 indicate Osteoporosis (porous bones) , eg. - 2.7, -3.0 etc. And -3.0 shows  serious Osteoporosis.

    • susan79492
      susan79492 Sedge99

      Posted

      That is exactly how it worked for me.  I broke my rib last autumn and then this summer my pelvis (wheelchair and walker/walking frame for 6 wks, yuck). I had to ask for the DEXA and that's when they found out about my OP.  Yes, -3.5 is kind of bad as is my -3.3..  Sorry. That is why we fracture so easily.

      So the GP started me on alendronate, but when I saw my T scores I asked for a referral to a bone specialist.  The specialist is the one who put me on Forteo.  The side effect that is scary, bone cancer.  It caused it in rats but it has not cause it in humans so I'll take the risk.  For me, I can't live being so fragile.  I like to hike and bike.  I think Forteo is for postmenpausal women though who have had a fracture.  I'm not sure about  somone as young as you are.  Anyway ask the specialist about it.

      Here is how to read the T scores:

      Scores between -1 and -2.5 indicate Osteopenia (thin bones).

      Less than -2.5 indicate Osteoporosis (porous bones) , eg. - 2.7, -3.0 etc. And -3.0 shows  serious Osteoporosis.

    • jean_34066
      jean_34066 susan79492

      Posted

      Susan I realize your comments were quite a while ago. I am 72 just started Forteo this week.  Aching bones,bloating,neck spurs hurting more,now I am so confused as to whether I should stay on Forteo or stop. So many conflicting reports. Two ribs broken with hugs from behind. Thanks Susan would really appreciate anything you can tell me about your experience. 
  • Sedge99
    Sedge99

    Posted

    No early menopause or irregular periods, no issues with diet or hormonal problems.
  • eileen64__UK
    eileen64__UK Sedge99

    Posted

    Hi Sedge

    I was diagnosed with  OP early this year...much older than you.cry

    I didnt realise and for years........ I have been getting down on my knees, leaning over the bath and using the hand shower to wash my hair..;......quite frequently my ribs would crack with leaning on the bath.  I just got to the stage where I tried tostand and lean over the bath and do it that way......we do have a cubicle shower but i dislike a shower.....love my bathbiggrin

    All of this was happening and i didnt know i had OP.  I had a 2nd hip replacement and was doing NHS exercise afterwards.....four weeks post op I was standing with my hands on the table and moving my leg out to the side slightly to strengthen the muscles......and there was a crack.....they took me into hospital and after an X Ray decided I had fractured my Greater Trochanter Bone   ???  never heard of it before but its at the top of my hip where the replacement is. Long storey short.

    That was Jan and this is November  and i'm still on 2 crutches and will be for the rest of my life.  When I came home after getting that diagnosis I decided I would ring the GP about a DEXA and it turned out I had OP and that was why it fractured so easily.

    So like you......I'm trying to find successful pain management. I've got pain from spinal problems and arthritis as well but i can cope with that but this fracture havent managed to get pain relief yet

    Although saying that the Consulatant/surgeon gave me a cortisone injection 6 weeks ago and it has helped....not pain free but its a lot better. I see him again on Monday to let him know how the injection has worked.

    Soprry I've rambled.

    I'll read the thread with interest with my own fractures in mind as well.

    By the way I'm in the North East

    Love

    Eileen   UK

  • Sedge99
    Sedge99

    Posted

    Thank you for your reply Eileen. My ribs have got to the point where they fracture spontaneously. I was in bed watching television and there was a crack. To be honest, that's when I started to worry and it began to get me down a little bit, although I am lucky that my fractures currently seem localised to my ribs.
    • eileen64__UK
      eileen64__UK Sedge99

      Posted

      Hi

      That is awful........I cant imagine it. Nothing much I can say except I do hope they find some proper diagnose and then some treatment.....not to cure but to help

      Love

      Eileen   UK

  • Sedge99
    Sedge99

    Posted

    Thank you Susan. I am also very active and I am actually shocked now that I haven't broken something more serious in recent times. I will definitely look into the drug you mentioned. I am wondering how I ever got a T score so bad at my age. I didn't realise that it was classed as 'serious' on that score.

     

    Thank you all for your replies.

  • Sunflower26
    Sunflower26 Sedge99

    Posted

    Hi - Sorry to hear that you have been diagnosed with osteoporosis at such a young age.  I was diagnosed with severe osteoporosis plus 4 compression fractures earlier in the year, which came as a great shock.  All the painkillers I have been prescribed have disagreed with me, as I am allergic to anti-inflammatories and codeine based meds.  I am on gabapentine for an earlier problem and have had the dosage increased which has brought a slight relief.  I am waiting to see a pain specialist on 8 December who I have seen previously, so am hopeful he will be able to prescribe something which will free me from pain.  I had an Aclasta infusion in August which is supposed to strengthen my bones.  I am having a dye injected into my spine next week to see exactly where the 'hot spots' are.  I would keep on at your GP to try and find some medication which relieves your pain or insist on visiting a pain specialist.  Good luck.

     

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