Newly diagnosed

[Sleeplessinlife]

Finally got my diagnosis after 8 months of painful symptoms. Now all of a sudden they want to ply me with medication! Previously gp, hospital, had no interest in my 'chronic back pain'! I have 7 vertebral compression fractures. I feel I have no choice but to take medication. The R.O.S. has been my only help. It's still a scary place to be though.

[Paulito]

I'm really sorry to hear about your vertebral fractures. I am newly diagnosed myself with severe osteoporosis and It was such a shock as i have always been healthy and fit. The ROS has been a life saver for me. I trust the information they give. I have just started a teriparatide treatment (a daily injection). I am quite tired and I don't know if this is a side effect of the treatment or just stress about it all. It took me a while to educate myself and decide on a treatment. Good luck with your journey.

[ROSModerator Partner]

Welcome to the communitySleeplessinlife , we're sorry to hear how difficult things have been with you. We've just popped in to say, there is a medication support video with a decision making section (28:30) and side effects one that might help.

youtu.be/aeOODwYX_Rs?si=V8r...(Not working as expected?)

youtu.be/qUFb12hd9c0?si=9dE...(Not working as expected?)

We hope you hear more from our members and their stories

Wishing you all the best in your journey,

[fraid]

So sorry to hear this. Same as me, you say your back is agony, they roll their eyes say they have a bad back too, take painkillers lie on the floor for 2 weeks etc. Hospital even xrayed my chest! Told it was my back they said I'd have to go back to gp get another appointment. Then told it was from my kidney op, fought with gp for a month before he finally got me x ray to find 6 vertebral # s, said 'no wonder you've been in so much pain.'

Would've laughed if it didn't hurt. Got new gp said 'first let's get your pain under control' my hero! Tried many things, ended up on Fentanyl patches up to 50mcg, lost 3 stones as lost appetite, nausea etc, so weaned meself down to 12 mcg and top up with Tramadol when very bad. Been on this for ? 3 years and works for me though I do have a very high pain threshold so can ignore a lot of pain. I am still crippled can't stand/ walk long but am mobile round house, sit, sleep banana shape. Sounds dreadful but I accept and adapt, still have my humour and keep busy writing.

Sorry this is so long, probably no help atall, I have runaway fingers. Do not despair there is help out there and lots of options re meds though you may have to shout for it, but seems your doc is on the case. Good luck.

[Southerngirl2787]

So sorry you have to go through this pain. It's awful. I can't believe your doctors weren't interested! But it took me nearly yelling to get an x-ray of the first fracture....then 9 more came soon after it. What is wrong with these folks?? I had kyphoplasty after not healing for months...I also had edema in the spine, so that was an indication kypho needed to be done. I have AS as well, so it adds more problems to the fractures. You can take the meds or not...I'm on Tymlos, it has been good, bone density has increased, no DEXA, useless at this point with so many fractures and kypho and fusions. Surgeon laid eyes on the bones, has drilled in them, and knows the improvement, says it's about 50% better than 2 years ago. I'll take his word over nearly worthless and inaccurate radiology scans. The drugs aren't perfect, and many will not help you at this point, my nearly useless Endo told me that, while she was pushing them! Surgeon said no to any BIS type drugs, only Tymlos and Forteo will work for folks who need to heal and fuse. I have had 4 fusions via surgery, 2 naturally from the AS...the BIS drugs stop and or slow the healing of fusions, and healing of bones per surgeon. Why on earth are these considered good for us! Tymlos and Forteo build bone density. I have started strontium citrate as a supplement for when I stop the Tymlos is about a year from now.

[TeddyandCocoa in reply to Southerngirl2787]

How was the recovery from the kyphoplasty? And how much better did you feel afterwards?