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fragile spine and multiple fractures

Valerie0106 profile image
23 Replies

I am a just turned 70 year old woman who has developed IBD in the last few years and have been hospitalised three times in the last year or so with it. Each time I have received IV corticosteroids followed by 8 weeks of Prednisolone orally. Each of the two previous occasions was followed by terrible back pain which lasted months. One of the GPs finally decided to order Xrays etc which show I have 5 vertebral fractures. A DEXA shows my hip score as OK, below osteopenic, but my spine is fragile. I have reluctantly begun Risedronate treatment. I am terrified of more fractures, kyphosis, disability, neverending pain. I am trying to get the IBD under control so that I dont have more steroid treatment as a first step (easier said than done). I am taking D3 K2 MK7, Dr Mercola bone supplement (boron, strontium) magnesium and calcium topically, , red sage and horsetail teas and bone broth. I do rehab Pilates. Help! What else has helped others? I find the information on exercise confusing and worrying. What about vibration plates? Can they be hired?

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Valerie0106
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Met00 profile image
Met00

There's conflicting evidence about vibration plates, but a lot of warnings about the high intensity ones being unsuitable for anyone who has had, or is at risk of, spinal fractures. The Marodyne LiV plate is a low-intensity plate that is claimed to be very safe, but it costs about £2500 (£3000 with VAT, but anyone with diagnosed osteoporosis is exempt).

Have you been checked for hyperparathyroidism? It can sometimes be the cause of IBD as well as osteoporosis. A blood test for Vitamin D, calcium and parathyroid levels should be done (in the same blood draw) to rule this out. I would definitely ask for this to be checked, along with thyroid and full blood count. Obviously IBD itself can result in poor absorption of nutrients, but it's still worth checking for and treating any other underlying causes of bone loss.

Valerie0106 profile image
Valerie0106 in reply toMet00

Thanks for this - I will ask for a check or whether I have had one. I am hypothyroid too - longstanding.

CDreamer profile image
CDreamer

Oh dear, you have been through it. I had ulcerative colitis in my early years and managed to control with diet since but did have a few years on corticosteroids in my 30’s. I also have neuromuscular condition which is usually treated with steroids but thankfully I was put on steroid sparing drugs because of a heart condition and risk of osteoporosis which I now have anyway.

There was a very interesting seminar recently which has been recorded which focussed on exercise which I found quite reassuring and it was recorded but not sure where - could be on their FB page. Basically the message seemed to be yes exercise but with care. ROS have plenty of information on exercise and this is one of their videos for after fracture

youtu.be/i8IC8GplY3o

Vibration plates: My personal view

The more sophisticated and used professionally are the plates which vibrated up and down with can be adjusted to suit the person using them. These are only found in specialised rehab units and should only be used under supervision. I found them fantastic in helping reduce pain and release fascia but my pain was caused by nerve/soft tissue, not fracture.

I have just ordered the LiV (low intensity vibration plate). I am not expecting it to improve my bone density any time soon but I know it will help me generally. They are expensive but they are safe for home use and it’s little and often I learned which helps most. I’ve never seen anywhere ability to rent.

I used an up/down machine with my neurophysio some years ago and felt the benefit. Basically there are 2 types of vibration plates - the ones that vibrate side to side very fast which are fine if you are young and fit but come with risks. I stopped using mine about 5 years ago and just would not even contemplate with fractures. You will find that you can buy the side to side plates for a few hundred but the up/down plate machines - many thousands and apart from the LiV, nothing suitable for home use. I believe you can rent some machines but I wouldn’t chance it unless I had expert advice on which machine.

I am very new to osteoporosis and have chosen not to take the drugs, but then I have no compression fractures. I’ve found the information on the ROS very helpful and am now working with a new neurophysio to negotiate a compromised set of exercises which I am capable of and which will help osteoporosis and the muscle weakness without tiring me out completely. Most of my current exercises are now focussing on the thoracic area as that is where I am stiff and balance - standing on one leg and having to reach and bend. I have been told to avoid heel drops because I have had ankle/heel/wrists fractures from falls and I am hyper mobile so I’m working on strength in my ankle and wrist areas safely using wobble cushions and weights.

My view is that it is important to personalise our exercise routines to suit the individual and that is best done by a specialist physio.

Hope some of that helps, best wishes.

Valerie0106 profile image
Valerie0106 in reply toCDreamer

thanks CDreamer - this is very helpful

CDreamer profile image
CDreamer in reply toValerie0106

forgot to say that the one exercise NOT recommended was the Pilates Roll Down.

Valerie0106 profile image
Valerie0106 in reply toCDreamer

ah yes! 👍

in reply toCDreamer

THE ROS has a consensus statement for healthcare professionals, free on the website. From this has come the 9 factsheets. One of these is the Pilates one which shows a few moves not recommended. theros.org.uk

CDreamer profile image
CDreamer

You should find the webinar recording here - in due course. I found it very informative.

theros.org.uk/information-a...

MaggieSylvie profile image
MaggieSylvie

The pain does go on for months. But I'm sure you will agree that it is not as painful now as it was when it first "happened".

I suddenly realised a couple of months ago that I had NO pain from my four compression fractures (though I know that I could set off T4 if I played the violin for long enough). So, I was feeling happy and forgot the domino effect, with the result that I now have five, the fifth waiting to see a physio to get referral for an MRI, so it's not diagnosed yet.

I have the pain under some control, but it doesn't seem so bad this week. I can do more so long as I keep taking the tablets - Paracetamol and Tramadol, but I am finding it easier gradually to get out of bed, which is a good measure of healing, and I expect the suffering to taper off week by week. So, do not lose heart - the pain will ease but you still have to let someone else do the heavy work!

Valerie0106 profile image
Valerie0106 in reply toMaggieSylvie

Yes Maggie I have hardened my heart to “helping” with jobs I shouldn’t do. I agree that the pain eases for a while but I have had so many in quick succession that there is little remission. The last one was at least amusing - I met a bat on the stairs in the night and of course fell down them…much as I was pleased to see a bat it was a shock. The ones with no obvious cause are more worrying. But hey ho I am starting a while new regime to try to overcome this! Good luck to you Maggie

Jennyjenny2 profile image
Jennyjenny2 in reply toMaggieSylvie

Thank you, this is so encouraging! I also have recent wedge fractures L1, L3 and L4. My T-scores are lumbar -4.6 and hip -4.2.

I’ve been wondering how long my pain will go on for, being 7 weeks already! I’m feeling miserable all the time and keep telling myself to snap out of it, but I can’t. My future is making me depressed, so this is very encouraging. I am using a red and near infra red pad on my spine and it gives me temporary relief. Unfortunately I have bronchiectasis and when I cough the pain is excruciating so I’m on long term antibiotics to stop the accumulation of phlegm. I think my wedge fractures were from coughing.

The physio has started me on pelvic floor and core exercises to build up the muscles around the areas.

Are you taking OP drugs? I’m so afraid of them as I’m allergic to so many things.

I’m also carer for my husband who has Parkinson’s. He is 8 years younger and he is caring for me at the moment 🙂

Jenny

MaggieSylvie profile image
MaggieSylvie in reply toJennyjenny2

Hi Jenny, So sorry you are going through this. I'm a carer too - my partner is 80 and a T1 diabetic who is blind and the deafness is worsening to the point that I am hoarse and he is angry and constantly getting the wrong end of the stick.

I am taking pregabalin for other issues but it really helps me a lot with sleep. I'm supposed to take one in the morning as well as at night but I am now on Tramadol for the pain from the fractures, and paracetamol. Tramadol can make one sleepy and so driving can be an issue as we both have hospital appointments. It's quite a lot for one, but add another person, and the visits can be described as "frequent". So I rarely take more than two tramadol per day.

So far as your allergies are concerned, you need to find out what it is you're allergic to and what medications contain those ingredients. Hopefully the antibiotics you are taking will not have to be taken for ever. Heat, pelvic tilting and gentle stretching are good but if you could take some pain killers you will feel more comfortable for longer and therefore be able to move around more, which will help you to recover. My feelings are that we should try to keep upright as much as possible to avoid looking like old grannies, which we may be, but no need to look like it. Seven weeks without pain killers can make you feel as if it's going on forever; no wonder you feel down. You can't snap out of it; you have injuries - and you won't be able to put your body under strain like you may have done in the past. May I suggest you do a pain count every day or so so that you can see how your pain is actually diminishing, and see what activities cause your pain level to rise. It also helps to understand what wedge fractures are - that the vertebrae have collapsed at the front and they do not heal but I don't think the pain is in the bones. Not sure what the pain is, but we have to remember that pain is felt in an area of the brain and it seems to be that that determines how much pain a person feels. I was in a lot of pain from my first four, and my GP was heard to say "I can't understand why she is having so much pain from compression fractures". Yes. A definite lack of something there!

My next step is to have a second try at getting blue badges for myself. I can't walk far, but that's probably a lot to do with my spending too long sitting down with my laptop! You will get used to a certain amount of pain, and then, if you are like me, one day, you will suddenly realise that you have none (so long as you don't push it!). In the meantime, try and get more help from your GP or your physio; they should at least have more knowledge than we do.

God! this world is in a state, isn't it?

Jennyjenny2 profile image
Jennyjenny2 in reply toMaggieSylvie

Oh Maggie, I’m so sorry you are having to go through all of this, with your partner as well. It must be very difficult for you both. And thank you for your very helpful reply.

I went to my GP yesterday and asked for an MRI as I would like to know exactly what I’m dealing with here. She immediately said ‘too much radiation’. Did I hear correctly? I think our GP’s went to the same school 😂

The X-ray that I had a few weeks ago showed the fractures but they couldn’t say when they were done. Went to my naturopath last week who hooked me up to a machine and told me I have a pinched nerve in my spine ??

A pain count? Sorry I’m not sure what you mean by that . And also I don’t know what blue badges are?

And yes, a crazy world we’re living in thats for sure.

MaggieSylvie profile image
MaggieSylvie in reply toJennyjenny2

Oh sorry, Jenny. I've just looked and see you are on the other side of the world! So you probably don't have blue badges. They are blue plastic/cardboard squares you leave in your car if you are disabled. My partner has some as he is blind but I can't use them legally when I park the car on my own, i.e. for my own hospital appointments, etc.

By pain count, I mean "How would you rate your pain today out of 10, with 1 being the least and 10 being unbearable/screamingly painful?" If you ask yourself this question daily or more often, you can get a sense that you are healing, or conversely, that you have been overdoing it and your pain level has risen.

I used to go regularly to a naturopath but since then, Chinese medicine, myofascial release and chiropractor. Myofascial release was fantastic (I have fibromyalgia) but don't know whether it can help the fractures. Chiropractic is more practical than naturopathy, though I believe in the diet side of it. They all deplete the wallet. I have to say that fibromyalgia doesn't bother me much at all now but that may be due to other pain being greater, or it might be that after the myofascial release and the passage of time It has diminished. I have also been taking some enzymes which help with pain, from the USA. If you have allergies to certain painkillers you might like to try those.

Incidentally, when I got the second fracture (which was a lot more painful than the first), I got an ambulance (waited 5 hours) and when I reached the hospital, I demanded an x-ray. That didn't show anything to the medical staff, so I got a scan after I had seen a physio. The chiropractor looked at both the x-rays and the scan and said she could see the fractures on both, but the scan was clearer. I am off to see the physio (this time at the surgery) next week, to see if I can get this latest one scanned, as I feel as if I may have damaged more inside me than a vertebra. Losing height this way can affect the internal organs; I'm sure you've noticed. Our GPs can't refer us for scans; it has to be a physiotherapist. One thing is certain - compression fractures can be extremely painful and debilitating; they cannot really be cured without surgery but we can be helped with pain killers. You just need to find what works for you - maybe TENS or topical painkillers like Voltarol. Doctors are not really interested in pain in my experience so you either have to go alternative therapy or be very assertive in the surgery. Good luck.

Jennyjenny2 profile image
Jennyjenny2 in reply toMaggieSylvie

Thanks, Maggie, for another detailed and helpful reply.

I have an appointment with my chiropractor on Friday (not for manipulation, he is so much more than a chiro).

Would you mind telling me what the enzymes are that you get from the USA for your pain? I’d be grateful.

I had a bad day yesterday. I did gentle exercises and a little walking, not good! Discovered my back feels better if I just rest it but that’s not a good idea also. One thing I have found is when I have to cough because of my bronchiectasis, I rush to a chair and sit down, then I take my straight arms to the sides of the chair and lift up to take the pressure off my derrière and therefore my spine, the pain is nowhere as bad…so I feel it could be a pinched nerve in the spine, or the fracture itself, or both.

Must give the portable TENS machine another go, I thought it made things worse the other day though.

Thank you for all that good information.

Jenny

MaggieSylvie profile image
MaggieSylvie in reply toJennyjenny2

Good morning, Jenny, The enzymes are called Heal-n-Soothe, from the Healthy Back Institute, accessible online. They contain systemic enzyme blend: protease AM, bromelain, Protease 6.0, alkaline protease, and also papain, boswellia, citrus bioflavinoids complex, ginger root extract, yucca root, turmeric rhyzome, alpa-lipoic acid, rutin and devils claw root extract. You are likely to have to pay import duty, which somewhat inflates the price, but I do think it's worth a try if you can tolerate the ingredients.

Jennyjenny2 profile image
Jennyjenny2 in reply toMaggieSylvie

Thank you so much, Maggie. Possibly a life saver. Appreciate you! 🙏🌸

Nuthatch profile image
Nuthatch in reply toMaggieSylvie

Sorry, jumping in here, hope that’s ok, I was interested in your violin playing and getting pain if you play too long. I play alto sax which is ok but for a shortish time only, the main issue for me is that they’re heavy things to heave around! I tried soprano thinking it might be better but it was worse - the playing position just doesn’t work for me. My 5 fractures are low down - T11, T12 and L1,2 and 3 and that’s where it tends to ache.

MaggieSylvie profile image
MaggieSylvie in reply toNuthatch

Hi Nuthatch, I've never played a wind instrument but it sounds as if the strain there is lower down. We are always trying out different chinrests and shoulder rests, and perhaps for you it is the type of strap that you need to use.

I fell on my bottom in the garden five years ago and eventually the pain I had was found to have been caused by my T4 being compressed and angulated, so there was nothing to be done. T4 is quite close to the shoulder blades, where most of the work takes place. Playing classical violin means an afternoon rehearsal of up to three hours, a break where you can't really relax, followed by a 2 1/2 - hour performance of almost continual playing in a very upright position if you are not tall. It used to be low back pain that bothered me when playing professionally some years ago, before any diagnosis, because of the awful chairs we were expected to sit on most of the time but the pain from T4 bothers me whatever I sit on. My low fractures are T2, 4 and 5. I don't know what the latest one is - T1 perhaps. The best chair - that I used for practising - was a perching stool but you can't cart that into a concert hall/church.

There is a book that I can recommend by Elizabeth Andrews - Healthy Practice for Musicians. The author is a string player, but inside, there is helpful information for all musicians. You could talk to other players to see how they manage, there might be a saxophonist in the local music shop where you buy your reeds, or you could visit a chiropractor who can help you with the pain, see what muscles are used when you play and advise you on how best to manage the problem. I would suspect you just need to move around more when playing, especially in a standing position. Failing all this, a back brace might help. Good luck and let me know how you get on. Oh and putting the case on a lightweight trolley would help with traveling.

Nuthatch profile image
Nuthatch in reply toMaggieSylvie

Thank you - those are all really good ideas. I’m very much an amateur though - you sound like a professional!

MaggieSylvie profile image
MaggieSylvie

They are sneaky, Valerie. My first one was undiagnosed after a fall. Three more in quick succession then happened. The first of those, I deserved (well not really - my partner required my assistance with lifting paving stones) then the next two were triggered by emptying the ash into the rubbish bin and then bending to wash my face in the wash basin. This last one - about three weeks ago) followed my stretching across the kitchen sink to reach something but in truth, was probably caused by my filling up the toilet cistern with a bucket several times a day prior to that. You can see how it's a domino effect. We just have to treat ourselves with kid gloves, I'm afraid. That's not difficult; the real battle is getting other people to understand. Take care, Valerie.

Valerie0106 profile image
Valerie0106

and you too

DazzleP profile image
DazzleP

Sounds like you are doing everything you possibly can to help. I also have spinal fractures and pelvis fractures and I work on the basis of the more I worry about falling etc. the more I fall. I just get on with life, take my pills, do what I can and don't concentrate on the what if's

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