I’m on another forum and stumble across this one which I’m so pleased. I had a major operation last May and pre op, I acquired sarcopenia, Kyphosis and Osteoporosis with multiple spinal fractures. I was prescribed Alendronic acid pre op but it made me feel very queasy so I stopped taking it as I hated feeling nauseous all the time. Post op, I was advised to re take it which I didn’t as I was too frightened of that experience again. It was the only drug I was paranoid of taking.
I slowly built myself up from wheel chair to walking almost every day (circumstances pending). I walk between 2 miles - 6 miles most days with a Walker due to my back and cataracts which has enabled me to build up my strength and muscle mass again. I’m almost straight but will never get back my lost 4” in height which I accept.
I’m almost there and feel I just need that one more big step to stand upright again. . I walk around the house with no Walker or stick, can walk very short distances with no stick. Can anyone suggest any form of safe exercise? I don’t want to become reliant on one of those back braces. I’m due to see a Rheumatologist at some point but that could be a while yet. Yoga? Pilates? Any suggestions would be greatly appreciated.
Thank you
Flower girl
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Flowergirl24
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First of all, you are doing amazingly well with your distance walking. Well done.
I do Pilates with a teacher who is actually a physiotherapist who is really aware of the needs of people with osteoporosis. You would need to be very careful because some physios aren’t.
The one thing you should never do is ‘roll downs’ no matter what anyone - physio - Pilates teacher - anyone says, don’t do it, it is very bad for your back and in Pilates we are never allowed to make a bridge higher than our bottom ribs. Plus we never ever do anything that hurts in any way, you definitely don’t want anyone hung ho making you do anything unsuitable so be very careful.
After I was found to have osteoporosis I was referred to the fracture liaison physiotherapist - think that must have been linked to rheumatology because at my hospital osteoporosis comes under rheumatology although, unfortunately I didn’t ever get to her classes because she was really good and got another problem sorted out for me, unfortunately covid started just after I broke my wrist and all I got was a phone call from the physio - so you could enquire about that.
There’s a book by Margaret Martin - her website is called melioguide - for exercising with osteoporosis - that will tell you what not to do as well as things you might be able to do but really I would try and speak to a physiotherapist with very good knowledge and experience in dealing with osteoporosis.
There’s a type of walker that holds you upright that might help you to stand up straighter rather than not use anything at all - upwalker.co.uk/?gclid=EAIaI...
I don’t know how much they cost but maybe you could hire one. In the U.K. the British Red Cross have a hire service for all sorts of things.
As wibC says a picker upper would be good for you, you don’t want to bend unless you have been shown the correct way to do it. You can also get long shoe horns that save bending to put on your shoes and my husband had a weird plastic thing for helping him to put his socks on after he had a hip replacement op. It worked well enough and I think you could use it for tights or whatever.
Hi and thanks for replying. (See my reply to wibC to the cause of these ailments) I’ve always been pretty healthy anc fit so all my walking is a joy to me rather than a chore for recovery. I feel I’m at the next stage now where I need a little bit more. However, I am very cautious and have taken it slowly snd cautiously. Eg: last year I went down to 37 kilos, severe muscle mass loss and bent over double to about 4ft 8”. 13 months forward I’m 52 kilos and 5ft (I miss my other 4”) but they will never come back - or I may get 1” when I can stand straight again!?!
I will check out Margaret Martins website and I will buy a picker upper (thank you wibC) especially for gardening. I will wait snd see what the Rheumatology people say. I hope your wrist is ok now.
I bought a walker online that is height adjustable and also folds up. Nowadays, I only use it when getting out of bed. I discovered that I can now go round a shop with a trolley but the last time I went to the Co-op there were none so I had to drag a basket around until I got the items packed into two bags. Masks are the thing but no-one considers those with mobility problems.
Thanks for your reply. All 3 mentioned were brought on when, completely out of the blue, I suddenly became very ill with a rare liver disease and had a liver transplant. So I am now rebuilding myself. The Walker is a blessing as it has helped me with all my walking. I switched briefly to a 3 wheeled one but it was too unstable due to my cataracts as I’m almost back to my natural walking speed. It’s been a long progress but I’m patient and careful too.
Well done on your perseverance. I applaud your cautious approach. Slow and steady improvement is paying off for you. You're smart not to go for too much too soon and risk your considerable gains. You've received good advice here and The Royal Osteoporosis Society website is another good source of information. Perhaps you'll get a referral to a specialist physiotherapist from Rheumatology. Good luck.
Can I add for gardening then you might find one of those food out seat things good - they can either be a seat or a kneeler - this sort of thing amazon.co.uk/PORTABLE-FOLDI... bought one for my husband when he had his hip operation but I use it. I use it as a seat when I’m pricking out seedlings in the greenhouse etc and I use it the other way up as a kneeler. I find it gets my back in a better position than just kneeling in the ground and although I don’t need them to get up I quite handy to have that extra bit of support.
Thank you! I went out today for a gentle stroll as I finally had my 2nd cataract operation on Wednesday. It was so lovely seeing clearly walking again 😎
As I said, your story inspired me! Am trying to stay positive, challenge myself and make an informed decision as what to do when I stop Prolia. Must have been a lovely walk 🙂
Thanks. The only two medications I’m taking for my bones are Acret and 6 weeks ago which now should have been 7 as I’ve just realised I’ve forgot to take it, Alendronic Acid, which I’ll have to take tomorrow morning. 🙄 Keep going too! ☀️
I stopped taking it because I don't trust. I now rely on K2 MK-7 and Vit D. I would refer you to Heron who impressed me with her posts. She has taken a number of measures .
This is a copy and paste of a Heron NS post from 3 years ago.
I've just realized it may not be so easy for people on the Bone Health forum to find this account which I posted on the PMRGCAuk forum a few months ago. So here it is.
This is just copy and paste of an account I wrote to keep track of things for myself. Please note I have no medical training and I haven't checked to see if the web links at the end still work. I think most will.
Since writing this account I've had a second DXA scan showing that within a year my bone density improved from -2 to -1.6. This was the main measurement at the hip, but all the measurements improved, including the spine. They are no longer recommending that I take drugs and next scan should be in 3 to 5 years. My doctor was amazed and asked me how I did it!
Background – “high risk” small-boned Caucasian female over 65, taking prednisone for polymyalgia rheumatica since June 2015, suffered broken leg (tibial plateau) when leg was severely twisted when I walked on ice February 2014. My T-score I is -2.0 but I am in the high risk category. When starting prednisone I was told that bone thinning was an effect of prednisone so I took my calcium and Vitamin D supplements, bought a pedometer and started walking more. It was at my request that I finally had a scan in September where the osteopenia was diagnosed. Even when I had the broken leg no one suggested a scan would be a good idea. All I knew was that the bone healed rapidly and well, I had not needed surgery.
After the diagnosis my GP recommended medication but by then I had started hearing about the potential for horrific side effects, so turned her down and started serious research. I started by talking to my friends. Two of them had successfully moved from osteoporosis range into osteopenia through non-medical means. One remains faithful to her regimen and continues to improve, the other has slacked off and become osteoporotic again. Suggestions from the more dedicated person included Nordic walking and parkour but she does not have polymyalgia (PMR). She also has taken various supplements under the advice of a herbalist. I am not ruling out her methods but am not completely following in her path. I took up Nordic walking about three months ago. I tell you about her because her experience is what gives me real hope that “natural” methods work. A sister-in-law was taking Fosamax but had to discontinue because of side effects (I don’t know what the side effects were).
I have done a lot of reading. You will find several good sites on the internet but if they are heavily promoting certain products it is a good idea to balance their advice with what you read elsewhere. I am convinced that the following regimen is the best for me, and I expect to be adding to this, and modifying things, as I continue to learn more:
Exercise: I have a weighted walking vest which allows me to gradually add small amounts of weight. This is to challenge the skeleton to lay down more bone. I am learning Tai Chi which is not only excellent for improving balance (helps to avoid those bone-breaking falls) but has been shown to improve bone density. I use my pedometer to make sure I get 10,000 steps a day. At present this includes all my daily activity, not just my walks. I may increase this in the future. I also carry on with long-standing physio exercises for osteoarthritis and practice a bit of yoga.
Diet: Because another bad side effect of prednisone can be diabetes I have to be rather careful with my food choices, but as long as you are eating a well-balanced diet you can consider adding the following supplements:
Calcium hydroxyapatite (preferred because it is most easily absorbed into human tissue and I've read that it is more readily absorbed by people on steroids) but calcium citrate also a good choice.
Vitamin D3 (Iately I’ve had to cut back D and calcium because of too high levels of D, possibly caused by unrelated ailment, sarcoidosis, an issue which will not affect many people)
Vitamin K2 (K2-4 and/orK2-7, K2-7 is preferred) Please note that Vitamin K2 (not K1) is nearly absent from modern diets, and is the vitamin that guides calcium into our bones rather than letting it collect in our organs or inside our blood vessels. Unless you have access to grass fed cattle and their products, and free range hens eggs (not grain fed) you will almost certainly need to supplement this vitamin.
Sources of Vitamin A betterbones.com/bonenutriti... I have read conflicting advice about whether retinol or beta carotene is better, and have decided that natural sources (food, or maybe cod liver oil) are safer choices than taking a chance with the latest fad in supplements.
You should have enough vitamin E in your regular diet, otherwise make sure you get a mixed tocopherol version
Magnesium which is also something many of us are deficient in. Apparently calcium interferes with absorption of magnesium so a separate supplement may be a good idea for a while until deficiency is dealt with. Lots of foods have magnesium although as with so much these days it depends on the soil they’re grown in.
I am taking a bone strengthening supplement from our local organic foods store, also Vitamin K2 supplement. I also take cod liver oil for the A and D content. I don’t think I’ll have much luck with a reliable source of genuine free range eggs until spring, but at least I know what to look for then. (Yes, I do eat prunes for the boron, but I don't believe the hype that they "cure" osteoporosis!) The reading I have done includes websites and books. As I indicated above, always read with a critical eye and take the best ideas from everywhere. I don’t think anyone has all the answers, and also we are each different, will have varying risk factors and so forth. But I hope my experience gives you some ideas, and also some ammunition as you withstand the medical profession’s strangely strong idea that we must take their dangerous medicines!
Books:
Kate Rheaume-Bleue, Vitamin K2 and the Calcium Paradox
Lara Pizzorno, Strong Bones (good book but she undermines her credibility by promoting certain supplements and a specific Zumba version)
Dennis Goodman, Vitamin K2 the Missing Nutrient for Heart and Bone Health
Dean, Carolyn, The Magnesium Miracle (2014 edition)
Websites:
authoritynutrition.com/vita...
australianprescriber.com/ma...
betterbones.com/osteoporosis/
osteopenia3.com/Natural-Ost...
saveourbones.com/about/ BUT note authoritynutrition.com/the-... Also, as I do more reading I begin to wonder if she is as up to date with recent research as she should be. There are some good exercises on her website, however.
Well done on your success so far, as others have suggested, I think that a physiotherapist is the best person to ask, as they will know what's best fker your condition. Good luck.
I have just bought a balance board to increase core strength and steadiness. Too soon to say if it's helping but my chiropractor seemed pleased when I told her.
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Amazing Improvement- No Drugs
