Hi, I am new to this group, I have spine of -3.9 and hips of -3.0. This was found in January 2021. I was prescribed Vitamin D 25mg to take daily for a year. I was tried on HRT but it gave me thrush in various female regions and horrific crippling migraines. It has now been stopped. I have quite a complex medical history which includes oesphgus issues and breathing issues. I have adrenal insufficiency which means I take a maintaince dose of hydrocortisone. It is pretty difficult juggling all the conditions at once.
I am not looking for treatment ideas I am more looking to know what will happen if my bones continue to decrease. What will be worse long term crippling migraines or decreasing bones? I have to weigh up the pro and con of both to decide which treatment course to take. It is so difficult. Adding into this I am a part time wheelchair user and part time walking frame user. I am only 35 years old. I am trying to decide whether to go for the housebound approach of crippling migraines or no migraines but whatever decreased bones causes later. It is so hard working with the unknown. Is any one here in this group with later stages of osteoporosis that can tell me about it? What it is like? What I would need to live with? etc.
I can't answer your specific questions but I wonder if you've been offered Tibolone. It's not regular HRT so you might respond better to it. I've been on it for almost 3 years and I get my next DEXA scan next year to see if it's improved by scores. I'm hopeful though since there have been many clinical studies proving it does improve bone health. I had to fight for it somewhat (I'm not menopausal and was 47 when I started it, having had osteopenia/osteoporosis since my mid-late thirties) because many doctors wanted to put me on the first line treatments such as alendronic acid. Sorry, I know you said you didn't want treatment ideas.If you want a view on whether to put up with migraines or vulnerable bones, I would say put up with migraines but try to see if there's something which can lessen the migraines or try Tibolone. Good luck. (By the way, I reside in the Netherlands if you do discuss Tibolone with your GP and he/she asks.)
Hi, I'm new with another medical condition. I started AA three weeks ago and also having the crippling migraines and having discussions on alternative meds. I've never been a headache sufferer and really feel for people who deal with migraines, they certainly no fun.I hope you feel better soon and able to make a decision on your medication options. X
In answer to your question as to what the future may hold as osteoporosis progresses.
I now have multiple spinal fractures and all have happened without anty trauma.
The last one occured between my shoulder blades and was brought on by the simple act of flicking on a light switch.
As a result of the fractures I am now for the best part in a wheelchair.
Owing to losing height everything has moved downwards.
My ribs now rub on my pelvis, and I can not sit in an ordinary upright position. Even though I am skinny I look to have an enormous stomach.
This all has a massive effect on eating.
With all my fractures I have been unable to move without large doses of pain relief, and with each new fracture my back has become more mishapen which now adds to the chronic pain the fractutes leave you with.
The fractures can in later stages effect the internal organs, with my last fracture of T7 I had difficulties with my breathing
I could go on as the list of changes are endless and increase with each new fracture.
To sum it up Osteoporosis is a horrible disease,once the fractures start to occur the pain is excrutiating amd it begins to rob you of your independance until one day it creeps up on you that your independance has gone completely.
As you wanted to know this will give you an insight into later stages of osteoporosis.
Even I am now starting to question just what happens next.
You could try transdermal hrt - I have migraines, but am absolutely fine with transdermal. It’s usually the tablet form that affects migraine. As you haven’t fractured, your bones may be of good quality - dexa scans don’t tell you the quality and are not always accurate, particularly if you are petite.
Good morning! Sorry to take so long to reply. That sounds like your bones aren`t as bad as the dexa scan would have you believe. You should be encouraged that you didn`t break anything.I would try not to worry too much, but still do all you can to improve the quality of your bones. Exercise is good, particularly walking - and anything is better than nothing. Also take supplements such as vitamin K2 (not 1) which directs the calcium (I take calcium citrate with is more easily absorbed) to the bones (and not the arteries), boron and magnesium. There`s lots of helpful advise on this forum.
Have a look at Osteoscan`s website too - they do a scan using REMs technology that tells you more about your bone quality osteoscanuk.com/ They have mobile clinics around the country.
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