I have severe OP, had 5 compression fractures, 2 years of teriparatide, now on Raloxifene. Over the last week I’ve had nasty hip pain, much worse at night. It eases with exercise, is worse with sitting and standing. I’m generally quite active, I walk the dog every day and I’ve been doing standing and sitting Pilates from YouTube videos after Dr Nick Birch recommended I do strong and straight exercises - he also said I have now developed scoliosis as well.. my hip fracture risk is 4.1. I’ve done a lot more driving recently and have had to take my huge 7k cat to the vet a lot as he has cancer 😢 I think I may not be exercising correctly but trying to find a physio or Pilates instructor who understands OP and spinal fractures anywhere round here as so far proved impossible.
I will speak to my GP but just wondered if anyone had had similar? It’s hard to pinpoint where the pain is - it’s generally achey but with horrid flashes of bad pain and quite spasmy especially in bed and getting up.
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Nuthatch
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I would be very, very careful if you are exercising on your own, I have done physio led Pilates in a small group of six people for many years, we are incredibly lucky with our teacher because everything we do is modified to suit our individual needs.
Our first rule in class and when we do Zoom Pilates is not to do anything that causes pain of any sort and if something hurts to stop it straight away even if we have done it before and even if our teacher has told us to do it - just don’t.
I find most of the Pilates exercises shown on YouTube and other videos far to ‘heavy’ (for want of a better word) for me. The only exercises I would consider are the ones shown by Margaret Martin melioguide.com
Margaret is a Canadian physiotherapist who specialises in osteoporotic patients. She is very measured and sensible and has an excellent website. Does your rheumatology department have a physiotherapist attached to it? That might be a starting place either for exercises or to point you in the right direction.
What region are you in and perhaps if anyone is seeing someone could they could point you in the right direction?
Thanks for that. The bone clinic physio didn’t suggest anything and said the group class wouldn’t be sufficiently challenging.. and it’s on a Thursday morning because apparently no-one with OP works..
I’ve drawn a complete blank with Physios and Pilates instructors to date. No-one with any understanding of the need to modify exercises.
I’m in Newcastle -the north east one not the Midlands one.
forgot to say I’ve had a look at the Melio guide stuff. A lot of it seems to be mat based and I can’t do that at all. Has to be sitting or standing. It’s also quite expensive!
Hmm. That’s a bit hopeless isn’t it! I had some physio recently because I was getting horrendous nerve pain that would shoot from my neck to my feet like an electric shock - probably similar to what you’re getting at the moment. I had some manipulation, some acupuncture and ended up with three simple exercises that have pretty much sorted out the nerve pain.
Sounds like the people in the hospital group might be older and not very strong but you’d think she must have some who are fitter or even be able to recommend someone to help. So that’s not great is it.
Yes, MM’s stuff is mostly mat based I don’t know if she does anything sitting down although I’ve seen that she does standing.
I’ve bought her book and a couple of videos that I watch on TV and they weren’t all that expensive.
Hopefully someone will come along with some ideas.
I have OP and I have been in Raloxifene for 3 yrs, it kept my hips and femoral head DEXA scores steady but there has been a slight deterioration in my spine. I am taking other medications (PPI and Apixiban that could have contributed to this). I am now being considered for teriparatide and awaiting blood test results. I have had a fractured sternum and two vertebral fractures. About 6 months ago I also started to experience severe right hip pain, this extended right down my right leg. I am usually quite active but I was struggling to walk and weight bear. My physio sent me for an X-ray and I have osteoarthritis in my right hip. I was referred to orthopaedics and received a steroid injection in the hip … all pain is now gone and I am mobile again. Have you had a hip X-ray? I would also be interested to know your experience with teriparatide as I am a little anxious about starting it.
That’s interesting - the monumentally uninterested gp who casually told me I had 5 compressions fractures (after insisting for 4 months that I just had mechanical low back pain) also tossed into that conversation that I had some osteoarthritis in my spine as well. I’ve changed GPs since. Now I know I’m developing scoliosis as well I feel my right hip is a bit lower than my left but I might be imagining it.
I haven’t spoken to my GP yet but I know they’re quite reluctant to send people for x rays. Probably will if I insist though.
Teriparatide was great for me. I was very anxious about the first injection but was completely blasé about them in a few days. No side effects other than putting on fat round my middle and oddly needing to wee urgently about 20 minutes after each injection. The bone clinic nurse said she’d never come across that before! My spine t score went from -3.6 to -2.1 (on the REMS scan not the DEXA but Nick Birch said the dexa was wrong due to the scoliosis). And it substantially reduced my back pain so I’m disappointed to have this new hip pain..
Thank you, I am hoping all my blood test are ok, particularly my renal profile as one of the result within this profile has been on the low side (GFR). Do you have access to physio self referral where you live, usually MSK. In the first instance I self referred to the physio attached to my surgery because of severe back pain, he arranged a lower back x-ray which showed osteoarthritis in my lower spine. He referred me to the physio at the persistent pain clinic./MSK. Whilst seeing him my hip pain started, he wasn’t sure if it was referred pain from my back so sent me for the x-ray which showed osteoarthritis also in my hip. He then referred me to the orthopaedic consultant who arranged the steroid injection. This may seem very long winded but it all took place within a couple of months and the relief has been just amazing. I am now back to walking around 10,000 steps a day and doing Pilates and yoga. Good luck when you see your new GP. An X-ray could be helpful when looking at a treatment plan.
Hi Nuthatch. I’ve had something similar with hip pain down leg to knee for several months. The pain was so bad my hip would give way and I was nervous of falling, having severe osteoporosis. Physio sent me for hip X-ray but that only showed bit of arthritis expected at 70 and didn’t explain pain. After several months in the queue I’ve just had an mri scan on lower back and hip. I’ve had a L2 fracture 3 years ago. Physio says pain always travels down and not up, (didn’t know that!) so cause is likely to be spine. Now await results.
I’m just finishing 2 years on Teriparatide and no side effects. Dexa scan due soon, but don’t know what to do next - def not infusion etc. Will post when get result of mri scan
My L1,2 and 3 all fractured 3+ years ago - I’ve wondered if it might be a pinched nerve thing. I thought osteoarthritis pain gets worse with movement and mine gets better. Obviously need to speak to the GP and hope the new lot are better than the previous - they’ve been ok so far.
I refused the infusion and denosumab both of which I was offered when I finished teriparatide. So I’m now on Raloxifene. It’s ok apart from yet more fat round my middle and thinning hair. I wanted to try strontium but the OP nurse said I wouldn’t be able to as I have high BP. I might have another go though as I’m now on medication for that.
I have osteoarthritis in the hip, as well as elsewhere, and it is worse on waking and improves with (gentle) movement. Mine was diagnosed after having an MRI done with referral via my GP.
For exercise (for osteoporosis) I follow the Strong Bones page on Facebook (and videos on YouTube). The main focus is on doing what is right for you. I can't do all the long walks etc. but find a combination of muscle strengthening, bone strenghtening exercises and balance helpful. But you need to do what will allow your fractures time to heal. I have nerve pain in both my neck and lumbar regions, both radiate along the nerves. This is caused by problems with spine. Remember issues like this can often be from more than one cause. A bit of a dwoner, other than it helps to know the cause to treat and manage the best way. I'm on pain medication too and alendronic infusions for the osteoporosis, but understand you have parathryroid issues.
Sorry can't help about the other medication. I hope you find your new GP more helpful. It makes such a difference. x
I have no idea if this would be helpful but have you looked into boron at all? Jorge Flechas is the guy, he supposedly turned around his wife's osteoporosis with boron, but that aside, he also says it's good for inflammation generally, arthritis, etc. I've been taking it, sometimes a higher dose (30 mg) sometimes closer to 12-15 mg. I was just diagnosed with very, very severe osteoporosis, which we only discovered because I'd been having chronic pain/repeated injuries. There are now so many things wrong with my skeleton (I've lost three full inches, one inch just since January of this year, I'm 62, not 82, so...it's a lot, and I also now have mild scoliosis.) Eighteen months ago, when I was seeing a chiropractor, who couldn't help me but was nice, he did an x-ray of my lower back at my request. I feared I'd fractured my sacrum; he (or his guy who reviewed it for him,) said no evidence of fractures (though I now know they fan be hard to find on x-rays,) but some mild arthritis. (I don't think that's why I was in pain; it was definitely an injury.) Last month I had another x-ray, this time at urgent care. We did find fractures this time, beyond that, not a lot of agreement on what might be going on. Took x-ray to a physiatrist, long story, he said my back actually looked quite good. no evidence of arthritis at all. It could be that none of them has a clue, but I started taking the boron about 6 months prior...who knows, eh?
I've also had hip pain, sounds different from yours, this is a pain I've had since college, and it seemed to be associated with longer distance running/walking. I'm not running any more, but I'm still walking, sometimes as much as ten miles in a day, and that particular pain hardly ever emerges any more. (I do get what feels like a strained tendon, which almost surely is due to being a bit more lop sided.) In any event, though I've not done but 5 weeks of Fosamax earlier this summer, and I'm being more careful about twisting and lunges, etc., I think I really am in less pain than I used to be. I feel almost normal.
Might be worth looking into the boron?
*I've also changed my diet, am working on absorption issues, various deficiencies (I was deficient in B vitamins, for pity's sake,) don't know if any of this is making a difference either but I did more than double my Vit D level, so...I'm absorbing THAT better. (Actually went a little too high. Dialing it back now.) But even D can make a difference, no?
I wouldn't trust Jorge Flechas. Just because taking such a high dose of boron worked for one person without side effects, doesn't mean it's safe for everyone. The recommended maximum safe dose is only 10mg in Europe, 20mg elsewhere, and I've read the main benefit is from the first 3-6mg. Your body will excrete the excess (but that doesn't mean it won't do any damage), so taking high doses could literally mean money down the drain.
I take 2000 iu vit d on the recommendation of Nick Birch. Also calcium citrate, vit K mk 7 from natto and magnesium.
Hi Nuthatch,
On the Royal Osteoporosis site there are 9 fact sheets and videos to support these fact sheets. Here is a link to them. theros.org.uk/information-a... They have all been written for people that have suffered spinal compression fractures following two years of reviewing the research. They have been produced from the consensus guidance for Health Care Professions. Which is on the HCP section of the website. PLease read them all before you start.
Start what? I’ve read all your generally helpful information over the 3 and a half years since diagnosis and spoken to your nurses on your support line a couple of times. I also look at research and my doctor daughter helps me interpret studies and results. I think the drug options for OP are pretty rubbish and there is too little recognition of its wider impact and implications.
I did find the exercises very useful - but now I also have scoliosis and hip pain which is new I feel I need some face to face advice about what exercise might help and how to do it safely.
Hello, I have something similar. I had already had 4 spinal fractures then, whilst walking a bit more (20 minutes) in the lockdown I started to get left back and hip pain (not on the spine) then one day got out of bed and dont know if it was a fracture or a really bad muscle spasm but the pain was to the left on the sacro iliac bone, I was forced to sleep in the recliner downstairs for 2 years. After a while the pain also moved around to the top of the hip bone.I sent a PETscan I had done for something else to a private firm for them to look at and they said there was a new L1 fracture so, by the timing, I am guessing it was that. I
Its frustrating, as I still cant walk far without the pain starting up (10 minutes) and if I twist sat in a chair it starts up, all the mattresses arent working, so I am swapping them all the time and got to be really careful getting out of bed. I also get the occasional muscle spasm in that left low back place (sharp stab). Every time I ever get to find out what is wrong with anything is from private. I found my first multipal fractures from a private MRI Upright scan.
Gosh that sounds awful, I hope you find some way to improve things though it sounds like you’ve already tried lots.
I think mine is improving though it may be because I’m taking naproxen at night which I’d rather not because it makes me feel tired and weird the next day.
Walking makes mine better though - standing and sitting aren’t so good.
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