people in agony,

[Radars]

I have been reading stories about people living with osteoporosis on one of the ros websites and that they are in so much pain and that they can't even move there heads and can't get out of bed, when I get like that I will not want to be here anymore, because I have mild to moderate wedge compression fracture of t12 which is not good, at the moment I can walk but I know whats in store for me.

[MnMTwo]

I have had three spinal compression fractures and I don’t focus on the what if’s.

I prefer to do everything I can to help my bones with exercise, diet and medication.

[Kaarina in reply to MnMTwo]

You have the right attitude. 💛There is no point focussing on the "what ifs" is there? They may well never happen.

[Fruitandnutcase]

Everyone is different radars - no one knows what the future holds for them. Concentrate on the here and now and what you can do to help yourself.

[Radars in reply to Fruitandnutcase]

I have just been watching a video of wearing a thoracic back brace, don't think I will bother it's too bulky and doesn't look comfortable.

[Kaarina]

Finding all this negative stuff to read day in and day out will make you depressed for sure. Perhaps you need some medication to lighten your mood a little. We all have our problems but do our best in the circumstances. I started out on a walk with hubby this afternoon- it is a glorious day - but unfortunately had to turn back after a short while as was in agony and begged him to continue which he did, thank goodness. I have been waiting for a foot operation which has impeded my walking big time but I shall do something else instead like getting the vacuum out for a bit and may do a bit of weeding in the garden.

.

[Radars in reply to Kaarina]

thanks, trying to find out the best things to do but most things are negative regarding medication for osteoporosis, and people who are suffering .

[Met00 in reply to Radars]

I remember being horrified at some of the experiences people described on a Facebook group linked to the ROS. But you have to remember that people are more likely to want support if they're really struggling, so they probably aren't typical. I know people who have recovered from spinal fractures and are leading a normal life. Is there a support group near where you live, where you can meet people with a range of different degrees of osteoporosis and impact from it? My local support group is very positive and encouraging, so if you could find something similar that might help you to be less worried about the future.

[Kaarina in reply to Met00]

I found my, not so local, OP group helpful and interesting but since lockdown decided it was probably a bit far for me to go travelling on two buses both unreliable at times. I could get a lift but hate relying on someone and I also felt that I had outgrown it after attending for years.

[Met00 in reply to Kaarina]

What a shame there isn't anything closer to you, but glad the group was helpful for a while.

[Radars in reply to Met00]

thanks, but I have not read of anyone who has got a worse dx as me with a mild to moderate wedge compression fracture of t12

[Met00 in reply to Radars]

Wedge fractures are very common types of spinal fracture that can occur with osteoporosis. I have a friend who had a severe fracture which had her hospitalised for some time and in a brace for 6 months, but she's now leading a normal life. I know that isn't true for everyone, but many people make a very good recovery from spinal fractures. What worries you most about it?

[Missus835 in reply to Radars]

I have 9 compression fractures. Grateful to be still walking. Also have PMR. Pretty sure there are those worse off than either of us. Some just don't go on about it. One day at a time Radars. No one knows what's in store, except one thing.

[Fruitandnutcase in reply to Kaarina]

Sorry your foot s giving you problems. Good that your other half carried on without you because there is nothing worse than feeling you are cramping someone else’s style.

Nice day for gardening - we’ve just come in and I’m just having a hot cross bun and a cup of tea while watching the Oxford /Cambridge boat race. Enjoy your afternoon 🐣🐥🐣

[Kaarina in reply to Fruitandnutcase]

Aw bless. I knew I would not be able to hobble far but he feels bad going out without me so I really hoped that once he was out on such a beautiful day that he would continue. He walks so much faster than me when on his own so all was well. You enjoy the rest of your day too. Simple pleasures, aye? 💛⭐⭐

[Teriparatide2024 in reply to Kaarina]

thank you Kaarina. I have numerous things wrong with me, that the most recent one being moved from gabapentin to pregabalin because the pain due to the teriparatide side effects (bone pain). Still trying to get this right. Feel I know more than the doctors know about this area! However, having done my homework and awaiting for a doctors call to help transition from one painkiller to the other, I know must get off my arse, and do some exercises and take my dog for a walk. As you say, what we have is today. Yesterday is history, tomorrow is a mystery, I need to be careful. I deliberately focus on enjoying today. Simple but not easy. Love to you all. XXX

[MyStar86]

Radars you are a lot stronger than you give yourself credit for. I’m 37 and lost my health many years ago due to bowel disease and osteoporosis, the only thing I regret is not making more of the time I had when I was fit and able to do things. So please don’t waste today worrying about what could happen but enjoy each moment of every day that you can do things. I look for the glimmers things that healthy normal people won’t even take a second glance at but any small thing in a day that makes me smile and gives me a reason to keep fighting and smiling because today is what matters not tomorrow, next week or next year. Time passes by so quickly so don’t focus on the negatives just enjoy what you can do now as who knows what the future holds for any of us. Take care and try to ignore the horror stories become your own story xx

[CDreamer in reply to MyStar86]

A very perceptive and inspiring post. I agree, we become what we think. Take and see/feel/hear the beauty in every moment.

A wise person once told me to focus what I can do rather than what I can’t when I lost my health which meant giving up my job, my sports and activities. Ten years on I am thankful for being still active and able to be productive, sometimes!

[MyStar86 in reply to CDreamer]

Thank you that means a lot. That’s very similar to me well my work made me leave in health and safety grounds as I kept collapsing at work and I tried to carry on fitness as long as I could but my body had to take priority and it was the hardest thing that accept not working and not doing the things I love. However I learnt to adapt then my most recent surgery took away what little life I had left and now I struggle walking down the road. I have days where I cry a lot as I miss my walks and being able to see people however I’ve started writing a list each week of the things I want to achieve even if they are tiny things to normal people that way I can feel I have achieved something every single day no matter how small. I always find something each day to make me smile which isn’t always easy but it gives me a focus.

Well done for all that you have achieved and for never giving up hope xx

[walk21]

I had my first vertebral fracture 28 years ago, and have had several more since. They are very painful when they happen but do ease off. I am still at 88 years able to walk to shops and library and to see friends, and to cook and look after myself. So don't panic, resolve to keep moving! Do some gentle exercise to keep your muscles strong and look after yourself. Use the information given by the ROS and not that from frightened sufferers

[Deb967 in reply to walk21]

What is ROS? Ty

[Radars in reply to Deb967]

royal osteoporosis society .

[Deb967 in reply to Radars]

What is that? A site?

[Radars in reply to Deb967]

nurses experts on bone health.

[Deb967 in reply to Radars]

How do I get to it?

[Radars in reply to Deb967]

closed now, opens again tomorrow, mon-fri ,9-5,0808 800 0035.

[Kaarina in reply to Deb967]

It is a charity with a free helpline for those in the UK. theros.org.uk/

Your bio does not state where you live.

[Deb967 in reply to Kaarina]

Won’t be for me. I’m in USA.

[Kaarina in reply to Deb967]

That is a shame.

[Mavary]

That is awful.

I get a lot of pain doing things but not to the extent I’ve got to stay in bed. I must admit I love being pain free in my recliner or in bed but it wouldn’t stop me doing the things I have too . Pain or not. And I still venture out on my scooter which I’m comfy on with a soft cushion behind me. It reclines just right for my back.

[Screwed]

what an interesting post. I am ok with having osteoporosis. It's the medication that is MOST ANNOYING and the side effects of it. I wonder what I would have been like without taking meds. I am heading for reclast this Friday after my 3 prolia injections. I didn't get much of an improvement with those 3 injections. Aiming to have the reclast and reevaluate in a year. Reclast is suppose to slow the rebound effect of the Prolia. Those issues are what scare me. Hopefully my side effects of reclast are minimal. Hydration and tylenol for several days before during after infusion.

Happy Easter to all.

[Fruitandnutcase in reply to Screwed]

I agree, that’s exactly it for me, I can live with the OP - it’s the OP drugs that bother me. Good luck on Friday I hope it all goes well but I’m sure preloaded with tylenol and being thoroughly hydrated will help.

[Missus835 in reply to Screwed]

I had Reclast infusion in October. No nausea. Nothing. It was a breeze, although I was nervous. It takes quite a few months to kick in. Not sure if it has or not. So far so good. Also hate the meds. I have 9 vertebral fractures. On prednisone for PMR as well. I'm sure back in the day, they would have appreciated some of the meds we have now. Nonetheless, I would like to be off them all. Have great anxiety over any new meds. All the best to you.

[Deb967 in reply to Screwed]

I had 1 Prolia with a lot of side effects. Seeing a Rheumatologist next week to go off but can’t take any Bisphosphonates. So scared and worried.

[strongmouse]

Sorry to hear that you have wedge compression. I have osteoporosis, no fractures, but some lumbar compression and problems with oesteophytes pressing on spine ate cervical level.

I take my lead from my mother who lived with arthritis from whem she was a child, developed ostoeporosis in later life, lost two inches in height and lost her central vision, but she managed to live independentely in supported living, went out for a walk most days and told me she would 'rather wear out than rust away'. She kept going well into her 80s.

Others have said on hear about focus. When we are first diagnosed it is natural to focus on what it means for us and how best to manage, but I belieive that it is important to then keep focued on what is important to you day to day. For my mum being independent was important and so was her faith and her family. They helped her to look outward. I am sure she had times when she worried, but she didn't allow that to overcome her.

Hope you are able to find the things that are important in your life and help to keep you going, as much as you are able to.

[josephinius1]

My latest kick is my PEMF mat. I really think it's helping my pain.

[Radars in reply to josephinius1]

what is a pmf mat

[josephinius1 in reply to Radars]

Pulsed electromagnetic...something. Check out Healthy Line. They have many sizes and price points. Supposed to help broken bones heal, which would definitely reduce pain. But it might also help build bone (which makes sense.)

[Radars in reply to josephinius1]

thanks, but never heard of it,

[Fruitandnutcase in reply to josephinius1]

I love my PEMF mat. I bought it after I fractured my sacrum a couple of years ago. I found a very good paper written by a couple of Italians which unfortunately I seem to have lost. Basically by using it I cut down from taking the max dose of ibuprofen (which I do not like taking for my bones and also because I have asthma) plus the max dose of paracetamol - I would start with paracetamol then two hours later I’d take the ibuprofen throughout the day.

So I went from agony and all those painkillers to using my mat plus just a couple of paracetamol every now and again. I notice that it has practically doubled in price since I bought mine though so they are expensive now. But yes, it really helped my pain. There are a few contraindications you need to be aware of and you’ve got to be able to lie flat on your back on a firm surface to be able to use it.

[josephinius1 in reply to Fruitandnutcase]

I actually use mine seated...it bends. Never read that I had to lie down. Do you recollect what the contraindications are? Meh, doesn't really matter; I'm just going for it these days. I've only had mine for ten days, started noticing after day 3 that I almost felt "normal" at least with respect to day to day movement. I slept with it two nights, have bee. ha ing trouble staying asleep (and per my smart watch) getting deep sleep. The first night I still didn't stay asleep but I doubled the amount of deep sleep (that my watch says is desirable.) I definitely can tell when I do/don't get deep sleep. So I googled it and it claims to help sleep, too. Mine is very programmable so sleeping with it IS an option. Gives me a nice firm surface, too.

I actually saved a little money going to the HealthyLine outlet store (online). It was an "open box but never used" situation but they have lightly used and even more used (Healthy Line lets you return one for a full credit toward an upgrade, I think, so they no doubt do have a stock of varying degrees of used mats,) for correspondingly less money. But even with that, they're definitely an investment.

However, after paying a physical therapist $180/session, for...not a lot of help...I decided this investment made more sense.

[Fruitandnutcase in reply to josephinius1]

I see you are in the US so I imagine there are more to choose from. Mine has to be kept flat, I’ve had it for so long I can’t remember if I was told not to use it on a bed but I don’t. I’m lucky I have no difficulty getting up and down off the floor. Here is a bit about contraindications , there are a few newmedltd.co.uk/pages/contr...

There are quite a few different programs on mine - it’s good to lie and meditate on it but I’m not able to sleep in it overnight.

It made a huge difference to my pain though and like you are finding very quickly. What a good arrangement that you can trade them in. It is definitely worth the money. I’m just surprised that since I bought mine (I think in 2020/21, not sure which) the price has pretty much doubled in that time.

[Radars in reply to Fruitandnutcase]

yeah but has it made any difference to your bones, if it was really good a lot of people on here would be on it.

[josephinius1 in reply to Radars]

People don't know about them, but I heard about it from someone on this site, I'm pretty sure. And they are expensive. Just a thought. Better than misery.

[Fruitandnutcase in reply to josephinius1]

Wonder if it was me you heard it from 😉

[josephinius1 in reply to Fruitandnutcase]

Maybe...but the one that really got me is a guy who calls himself the PEMF guru (I think) and he shows up in a lot of different places. He had been on Fosamax, I think, then managed to break both femurs. Showed x-rays, seared the images into my brain, and definitely fuels my resistance to bisphophonates. Anyway, he rates the mats, recommended Healthy Line, said the mat helped him more than anything else did.

[Fruitandnutcase in reply to Radars]

It’s like everything else where bones are concerned as far as I can see you’ve no real way of knowing have you. Repeat DEXAs tend to be done every five years if you are taking bisphosphonates or possibly after three years if you are having infusions for three years. That’s a long time to wait to find out by which time you are three or five years older than you were when you had the first one. Then how accurate are DEXAs? Are you being checked on the same machine? With the same operator? Have you been positioned properly?

I have had a REMS scan every year for the last few years - that shows things are not getting worse but I’m not sure there is any way of knowing for sure what is helping.

If you change your diet and eat foods that will help your bones, avoid foods that won’t help your bones, start doing lots of weight bearing, balancing and bone strengthening exercises, take bone friendly vitamins and minerals and in my case lie on my PEMF mat - how do you know which out of all that lot has made the difference / improvement? I have absolutely no idea.

In my case it certainly helped massively with the pain I was getting. I saw a rheumatologist and when she read my MRI scan reports she couldn’t believe that all I was taking for the pain was a couple of paracetamol. I put that down to the PEMF mat.

[Radars in reply to Fruitandnutcase]

been reading about it seems good but the only problem for me is I want to gain muscle mass, it seems it makes you lose weight, I want to gain weight, I have got no testosterone because it has not recovered since finishing treatment for locally advanced prostate cancer in 2016,if it helped me to gain a bit of muscle mass I would buy one .don't think it would be wise for me to use pemf with my high risk prostate cancer .

[josephinius1 in reply to Radars]

Gee, I've never read that it helps with weight loss; I'm going to strap it to my back and make it part of my weight bearing regimen if that's something I could gain from it. Except as a person who gains weight at the drop of a hat, my guess is even that wouldn't wotk for me-my body would find a workaround. My guess is. it's more of an issue for people who already struggle to keep weight on, (just because for those of us who've "tried everything," our observation tends more to be, "It's never true for us, even if we're restricting calories, running an hour every day, and taking berberine ("Nature's Ozempic",)) and if that's your story...I do know that's not great for the bones (though my extra weight didn't give me any advantage. either,) so, I'm sorry.

Gee, I just googled it, apparently it's true, promotes fat loss! Bonus! But I'll still bet I won't see it.

[MayGodBlessYou in reply to josephinius1]

heya, as far as i can tell, body fat is a good thing for bone health, even a better factor than body mass.so long as not morbid obesity.

in the old days, patients were told to lose weight, as though weight was a strain on the skeleton.

but now that has turned around, the weight bearing exercise is top of the list of importance. an endo recommended healthy fats and oils like avocado oil and butter, bearing in mind that was advice for my Mum who's underweight

x

[Fruitandnutcase in reply to josephinius1]

Mine definitely hasn’t helped me lose any weight either. ☹️

[josephinius1 in reply to Fruitandnutcase]

Thanks for that. No contraindications for me (yet!)