Medication doubts

[Alldairy]

I'd love to hear experiences of anyone who has chosen not to take medication despite very low T scores (my spine = - 4.6) but no fractures as yet... I was started on AA, but really unacceptable side effects of gastric pain, severe muzzy headaches, dizziness and suddenly needing support just to walk are too scary.

[Met00]

I'm a similar age to you, was diagnosed nearly 9 years ago, haven't fractured and don't take meds. I didn't get on with AA or Risedronate, so have been relying on exercise, healthy diet and a few supplements. Do you know your hip and/or neck of femur t-score? It's really important not to rely on just one t-score for diagnosis, as it's quite common for errors to be made. At my last DEXA scan, 5 years ago, my spine t-score was -3.6, hip -2.5, which by some experts is considered to be too big a difference and indicative of an error. I had a REMS scan 15 months later and my scores were -2.6 in both; as REMS is less open to error than DEXA, I believe this to be more accurate. I had a follow-up REMS a couple of years later, which showed little change and am due my third REMS next month.

[Alldairy in reply to Met00]

That's really helpful to know, thank you. My T-scores from my (first ever) DEXA scan are spine -4.6, neck of femur -3.1, hip -1.5. So quite a marked difference between them. Perhaps I should get a REMS? - will see if that's possible near where I live.

[Met00 in reply to Alldairy]

That's a huge difference between your scores! I would definitely recommend a REMS scan if you can access it and afford it. Here's the link: osteoscanuk.com, which is based near Daventry but holds clinics around England and one in Edinburgh. Or there's Profortis in Amersham: profortis.co.uk/bone-health. The latter is run by a physiotherapist, while Osteoscan is run by a private (formerly well-respected in the NHS) orthopaedic consultant specialising in spines.

[Alldairy in reply to Met00]

Thank you for that info - I'll certainly follow up on getting a REMS done.

[jamr in reply to Met00]

I had not heard of REMS before this, as I have had a number of DEXA scans. With minor variation. I had a full body DEXA as part of a study unrelated to osteo and my legs and arms were good, + scores while my hip was -2.5, spine -3.1. Have improved slightly over 6 years, however past 2 years where I was hoping to see significant improvement when I examined my protocols there were some serious flaws in it. Though exercising yoga, paddling etc, was not doing real resistance training with weights or any jump training. Also not supplementing, I took a single advacal forte for Ca etc, when it should have been 3 per day. Also realised I am very poor at eating 5x veg/salad serves per day. My diet has a lot of good in it, but not eating leafy green salads/smoothies every day. So my next 2 years will make these changes, and I still plan to avoid the Prolia and similars because I dont trust the side effects and think I can do better in the next 2 years before next DEXA. I am male 65.

[fraid]

I had 6# s before it was agreed I had OP, couldn't have Dexa scan etc, no idea what T scores are, refused AA & Prolia re side effects, just on Adcal D3 and hoping okay. I have been left to it, so got my strength back, more mobile though still very limited and try not to worry about what may or may not happen- it's just pot luck. 🤷‍♀️

[Alldairy in reply to fraid]

Thank you for telling me your experience. I must admit I am feeling pretty much the same way - so now I want to try very gradually to build up some strength and become a little bit more mobile, improve my diet, take helpful supplements, and see how it goes!

[fraid]

Good for you, every med has side effects and before you know it you're taking 13 tablets to counter those of each one! 🙄 Easy does it but hope things improve hugely, being mobile in itself strengthens bone, just don't fall down ! good luck. 🤞

[Alldairy in reply to fraid]

It's lovely to have some encouraging words - it can sometimes feel like you're just written off. Physio was rather dismissive, said I was severely deconditioned and wouldn't see me again 😟 Oh well...

[fraid]

Yep, I am written off. Physio ( waited a year) wouldn't touch me, gave exercises that made me worse and tried to bully me into having Dexa scan despite being told doc & nuclear nurse said no coz I couldn't lie flat/ pain / further damage not worth it. It's a slow process building yourself back up but def. worth it both physical and mentally. I had to look after myself so not much choice really unless I wanted to sulk and starve in the corner. Take it easy. 🤗

[Alldairy]

For now I'm just trying to have a short walk a few times a week - and not to dwell on how life used to be. But it's hard!

[DeannaAlphi]

Hi there. There are many of us who stay medication free. I'm 69 and even stopped taking adcal due to side effects. Had two spinal fractures when I fainted in the road. It took over two years of sheer determination to get my present degree of mobility back. I can now sit on a normal height chair for a short time. I've fallen several times since then, luckily with no further fractures.

I did have a bad wrist fracture as a result of a hard fall on the dancefloor. We crashed hard with another couple, ...all of us doing a fast during a very fast rock n roll. Other than that I'm proud to be medication free.

There is a way of looking at previous posts...sorry I don't know how to access them. You're welcome to read my detailed previous posts if you can find them. I would always say, do not feel pressurised into taking medications. Do research and go with your educated gut feeling.

Wish you the best. Di Doh

[Alldairy in reply to DeannaAlphi]

Hello, it's so helpful to hear about your experience - thank you for your encouragement. There's lots I need to learn, and this forum is proving to be such a brilliant place to start!

[Alldairy in reply to DeannaAlphi]

Hi again, I have been reading through your posts, which are so relevant to my own situation, and I hope that you won't mind my asking how you managed to get to the point where you are able to sit? Back and pelvic pain have made it virtually impossible for me to sit for the past 3 years, and my life has become so limited because of this. (No help has been forthcoming from health professionals...) Any tips would be very, very welcome x

[DeannaAlphi in reply to Alldairy]

Hi there. I quickly discovered that the heat from a hot shower helped to free up my movement enough to dress myself and walk a little. I came across a Groupon email which advertised a special low price for a number of treatments with a homeopath. I could only afford 3 or 4 as I could not work. I did not know what a homeopath did so I telephoned to find out if they thought they could help me. When the young woman saw me walk from the reception to her surgery, she knew straight away where my pain was and instantly had my trust.

I think an angel led me to her. The first thing she did was help me find the most comfy position possible for me. Until she told me, I had no idea that to bring my knees up with my feet flat near to my bum.....took pressure away from my back. That helped me sleep, by putting a pillow under my knees. After taking a thorough medical history from me.....she moved me where I could not move myself. Simple movements lying on my back to begin with, huging one leg as close to my torso as I could...(which wasn't very far to begin with) then the other leg and then both. Then pulling the bent knee towards my opposite shoulder. ... going through the range of leg movements possible while on one's back. Even now, I do these exercises every morning before getting out of bed.

I already had an inversion table, which safely tipped me as far as upside down as I was comfy with. These things reverse the force of gravity, safely and naturally realigning the back, again taking pressure away from the back and gently relieving the pain. I suppose it's a form of traction, except you are in total control, instead of someone else stretching you. My hospital consultant assured me it could do no further harm and to use it as often as I wished especially if it helped with the pain.

I did my best to carry on life as near normal as possible, accepting that everything was taking me a lot longer than normal, plus my range of movement was shortened quite a lot. I could not bend forward or to the side. I bought a grabber thing on a long stick to help at home. Once my legs were a bit stronger and nearer to normal, I would go down one one knee instead of bend to reach things.

Once on the floor, at home I would pull myself up to my feet using the furniture. I could not use my bath because I was unable to get out of it. I would not use a bath aid chair because I felt I needed to control any movement to avoid trapping a nerve which happens sometimes.

Before my injury I was teaching beginner level modern jive dancing. I chose to continue but changed my role to greeting dancers, taking the money etc. I had decided I think that dancing was not possible for me anymore. Until one of our best dancers decided he would prove me wrong. Because it's a partner dance, the gentleman takes the lead, guides you and is there to help you balance. I trusted him but felt it was wrong to rely totally on any partner because if there was a problem, they may feel responsible.

The hospital arranged for me to have balance classes and my local council highered my chairs and bed and put handrails on my stairway.

I was unable to drive for sometime, I could not change gears. As I improved, I changed my car to an automatic which had a better seat and did not require me to lift my left leg which caused a lot of pain.

I went to my gym manager who helped me and later took a 6 week membership at a different gym. This was a huge game changer as the staff tailored their classes to the needs of their members. I persevered through dizzy spells and some pain and improved a lot witout even noticing it. Stretching exercising was good, and also using noodles in the swimming pool. The woman would play 1960's music which made what we were doing fun. It did not feel like excercise.

There were always occasions where only a normal chair is available to sit on. For a long time it was just too painful so I remained standing. I also put a child's polystyrene bolster seat inside a rucksack and carried it everywhere I went. I simply put the rucksack on any normal chair and sat on the rucksack with the bolster seat inside. Gradually I would sit on lower chairs for very brief moments. Yes it would hurt but it had been worse. Brief moments got longer and longer. I no longer use bolster seats unless I'm on an aeroplane or a theatre or cinema where I'm not able to stand or move around easily.

Fairly recently I noticed my friend's grandchild stand from sitting on the floor, in an unusual way. She crossed one leg over the other to begin with, it's difficult to describe. She did gymnastics and said she had learned to do it in her classes. Well I'm now able to get out of my bath using the method I had seen her use to stand up.

Not sure if you read the post I wrote explaining my use of a sacro illiac belt. So many different little things have helped along the way. With all of it, I would say go slow, go gentle, use distraction to cope with pain and use warmth to challenge the pain bit by bit until you conquer it. There is a difference between being unable to do something for whatever reason...and choosing not to do something. Every time I pushed myself that little bit further, a little voice inside me told me I was being unwise. I proved that voice to be wrong but am grateful to it for slowing the process to a safe pace.

[Alldairy in reply to DeannaAlphi]

This is all really helpful - thank you so much for sharing these things with me, I do appreciate it. I know that I need to be more proactive if I'm ever going to make any progress, and it's exactly these kinds of practical details that I was hoping to learn about x

[DeannaAlphi in reply to Alldairy]

The homeopath I saw had scoliosis of the spine, had no help from the NHS which is what made her choose to specialise in the conditions which the Nhs did not help with.

Similarly one of the personal trainers at the gym had been born with no cartilage and was exempt from exercise at school. He decided to help himself and specialises in exercise for people with bone and joint problems. Go have a chat with staff and managers at local gym or leisure centres....hope you strike lucky.....ask your doctor if he can refer you to exercise classes for people with mobility issues. Find out what is in your area.

I was also helped a lot by people on this site, will be forever grateful to them and therefore naturally I'm happy to help others if I can. xx