Diagnosed with Osteoporosis and 3 crumbed vertabra

Many thanks for your detailed and informative reply J. As far as the Alendric Acid goes you are right, I have given it a fair trial and it leaves me with little quality of life when I dare not go out for fear of intestinal problems. Plus it takes at least 5 years and more to be of true benefit. I had no idea of alternatives and I will study what you have said before seeing my new GP again when hopefully he will have access to my notes and particularly the DXA results which I hope he will share with me. He has already said that he will refer me to a Phsiotherapist and a Rheumatologist. Also to the Eye Clinic as I have vision problems caused by the Glaucoma altho' my sight was saved by emergency laser eye surgery.

?I have other health issues - arthritis (3 kinds), lymphoedema feet/ankles/legs, COPD/Asthma, controlled high BP, IBS etc. but have learned to live with these conditions - a well developed sense of humour always helps! However the side effects of Alendric Acid could become the straw that broke the camels back so to speak. By the way I am 66 which I think I did put in my post.

?I have had a lifeline necklace alarm installed in my new flat just in case I suffer a fall and a keysafe so at lease I feel some peace of mind should I ever need to call for assistance. However. I do NOT expect this to happen, just being sensible.

?I will keep you informed of any progress I make with my new GP, altho' I suspect that some of the treatments you so kindly mention may be more expensive and therefore not offered. It would be wonderful if I could get the 'Epi-pen' type self treatment!

?Once again, thank you for your help and shining some hope on this issue for me

Elizabeth I'm so sorry you are having such difficulties.  If it's any help, the most common cause for fracture is falling, so learning how to prevent falling is a key.  The other thing is learning actions which will protect your spine.  A physiotherapist can help with this.  Learning tai chi can help with balance, and the advantage of tai chi is that is is very gentle and doable by nearly everyone.  Using walking poles is helpful when walking, although wise to build up to the time using them as it takes a while to develop the upper body strength, so need to go slow with their use.  Can really help people get out for walks, which is agreat exercise for the bones.

Diet is important, there are so many micronutrients we need for good bone health, not just calcium and D3 - magnesium, Vitamin K2, and a few others.  Most can be got from diet, but supplementation with K2 is a good idea.  It's the vitamin which, with magnesium, makes sure calcium actually gets into the bones not deposited where it's not wanted.

Hi again Elizabeth, Re. your mention of your next GP visit when he has your DXA results which you " hope he will share " with you. Don't ' hope' he'll share the results he MUST give them to you. Insist. Whose bones have been scanned??  To be fair, he does seem to be on- the-ball so maybe there'll be no difficulty. It's great that he's referring you to a physio, rheumatologist, and other specialists. it's a good start.

Another thing - did the old or new doc. tell you what he thought the cause of your OP is? The reason that's important is that if a cause is found, and then corrected, it's an added boost to help your bones. Some of the causes are early menopause, coeliac disease (often undiagnosed), irritible bowel disease, low Vit.D levels, anorexia in the past, poor vegitarian diet, long -term steroid use (for your asthma, or arthritis), family history of early OP - and lots of other conditions and possibilities. 

I don't know if a personal alarm is necessary but if you're more secure with it , it's well worth having.  It is, however, really important to try to prevent falling. There is a saying in OP circles "no falls, no fractures", which is mostly true.  Until you get to see a physio. who'll give you lots of advice here, ask the GP if he has any information leaflets. Another possibility for you is that in the UK there is a really good OP association which has a helpline for advice and information. Look them up and get in contact. 

Above all, stay positive.   Kind thoughts,  J

I have had IBS for most of my adult life with no cause found until my daughter had tests for lactose intolerance. I always kept her on a lacto-free diet because I realised very early on she could not tolerate it. and the tests proved this was the case. I do try to avoid dairy where I can so I have had calcium missing in my diet - also I have to avoid strong sunny days as I get a skin rash that covers arms, shoulders neck etc. itches like crazy; it is not a red rash, but pin point white tiny blisters. I was told to stay out of the sun! So lack of calcium and sunlight. My mother also had OP and many wrist fractures, then had a fall that caused hip and pelvis fractures, followed by pneumonia and she died in her 70's. Also I have been a smoker since my 20's. I had to have a Hysterectomy in my 30's which I guess didn't help but went onto HRT at 45 - This was abruptly taken away when I reached 60 because of cancer links. Steroids I have had for inflammation in the past but never for more than 2 months as I really dislike their use. After Glaucoma I had many drops and a 4 day course of steriods after eye surgery. As I am sure you will gather, it is only recently I have put all of these things together because no GP has had the time to look back and do this for me. As for the necklace alarm, I had this put in because  one of the side effects of Pregabalin is sudden dizziness which causes me to stumble or trip. As I live alone this gives me some peace of mind.

?I will ensure that the results of January's DXA scan are explained to me by my new GP because all I was told by my last Dr. was that I had lost 2" in height because 3 vertabra had fractured and crumbled down on one another. I am unsure whether or not I will understand the technicality of what he tells me but I will  research it until I do.

Again, I thank you for your kind replies..  

 

Hello Anhaga

?Thank you for your advice and time. I already take Magnesium Taurate but have never heard of K2?

?At present I walks with one stick (my left side is extremely weak but the right is quite strong). Upper body is weak also. Really my muscles have deteriorated badly over the last 2 years because I could barely walk due to the sciatic pain. I am hoping the Physio will advise me of what exercise to do and not to do - at present I just walk as much as I am able bearing in mind the lumbar pain (which Pregabalin does not take away). Some kind soul has given me a Tri-walker to help me but just leaning on something to walk does not really gel with me. I also have the problem of very swollen feet and ankles - finding shoes, boots etc. is a nightmare even though Cosyfeet do make footwear to accommodate swelling.

?Before I sound very sorry for myself, please know that I am by nature a happy person and love to spread my smiles around. I would rather help others than myself and hope I can continue to do this for a very long time. It's actually been hard for me to come onto this forum to ask for help and guidance but I am glad that I did. Thank you again. 

It should encourage you to know that in fact dairy is not considered the best source of calcium in the human diet, no matter what the doctors and some dietitians tell you.  Think about it - what other animal continues to consume food designed specifically for its young, and in the case od humans food designed for the young of other mammals?!  That being said you may find that some types of dairy will be all right for you, especially the fermented foods like kefir, yoghurt, some kinds of aged cheese, brie, etc.  On the other hand there are some leafy green vegetables which are calcium powerhouses, like kale, collards even broccoli.  They can be consumed raw, or cooked, hidden in soups, etc.  Calcium is found in lots of foods we eat every day, like oranges.  You can also get it from tinned fish like sardines and salmon if you eat the bones.  Check the internet for good non-dairy sources of calcium for other ideas.  I went to a bones clinic at my local hospital a few months ago and one of the things we were told was just by eating a normal diet we automatically got a significant portion of our necessary calcium.  My feeling after all these months of worrying and reading, and discussing with others, is we need to be more concerned about all the other things.  The body automatically wants calcium, it prefers calcium to almost anything else, which is why we can't consume it with some medications, with iron, or, if needing to supplement, not even magnesium.  People who take strontium to improve bone density (also questionable btw) have to take the strontium at a separate time from calcium as the body prefers calcium and won't absorb the strontium.  But we need to be proactive in making sure we get the other nutrients we need for proper utilization of that calcium, hence what Kathleen and I have been saying about considering certain useful supplements to go along with a high value diet.  

Thank you so much Anhaga for all of this info - it is a lot to digest (excuse the pun) and I will give it all due thought. I love green leafy veg either cooked or raw but unfortunately there is nothing more likely to set my digestive system into "Couldron" mode and full blown IBS. I do take Calceos given by my last GP who also suggested I sourced and took Magnesium Taurate as a supplement. I do take them aeparately at different times of day. I eat a great deal of oily fish of the tinned variety (simply cannot afford fresh except Salmon steaks and mackeral when on offer). Someone mentioned K2 but I'm afraid I do not know what this is or how to get it - perhaps you can enlighten me please?

?Kathleen mentioned that some of us are put on AA without a proper diagnosis but I am certain that altho' I was not told of a  T-score my 3 low vertebra along with the sciatic nerve/s involved have crumbled (not crumbed as my silly fingers typed as subject title). She explained to me how one goes and the others follow as in my case, but perhaps she thought it was too much info all at once to start adding and explaining T-scores. I left the surgery to move away and never saw her again. My new GP was surprised to say the least that I hadn't been referred to anyone at all and is now referrring me as I said to a Physio

?and Rhuematologist.....no mention at all of a "Bone Clinic" or is that the role of The Rhuematologist? By now you have gathered I am utterly 'Green' where all of this is concerned so your guidance and help is worth its weight in gold!

Have a great weekend  

Hi Elizabeth.  As we all live in different places, incuding varous countries, some of wht we say may or may not apply in your case.  Where I live the local hospital puts on a special clinic about twice a year for people with or at risk of osteoporosis.  I had to wait eight months after my DXA scan to attend so by then I'd taught myself almost everything, and more, than the clinic offered.  Vitamin K2 is not like K1.  As you probably know K1 is found in many foods, especially leafy greens, and is important for blood clotting.  Vitamin K2 is much less well known, but has been shown to help in maintaining bone health.  It does this by acting as the guide for calcium.  D3 is needed for the body to retain calcium, but without Vitamin K2, and magnesium also, I think, the calcium won't necessarily go into the bones but may be deposited on the walls of blood vessels or in organs where it doesn't belong.  Hence we are told not to take too much calcium to avoid heart problems or kidney stones for example.  However by taking Vitamin K2 a lot of those problems are reduced or avoided.  Unfortunately our primary source of K2 used to be grass fed and naturally raised animals and their products - meat, eggs, dairy.  Because most animals in many countries are now grain fed they are unable to make K2 any more, and therefore we don't get enough.  There is still a little K2 in some foods, like fermented vegetables (think sauerkraut and its ilk) and other fermented foods (like kombucha, possibly brie, kefir, etc) but the only reliable source is a fermented Japanese soy product called natto which is, apparently, an acquired taste.  I've never actually seen or tasted it.  It is the source for the K2 we find in supplements.  I buy mine from a natural foods, organic foods store which has a large selection of supplements as well.  It isn't available from the pharmacy.  There is quite a lot of good info online about this vitamin now, but of course the medical profession generally is sadly deficient in nutritional knowledge.  The rheumatologist at the bones clinic actually said there had been four studies done showing Vitamin K did not help bones.  But a very simple google search brings up articles about studies in Japan which state there is a definite improvement in bones when Vitamin K2 is taken.  The reason this became of interest is that natto is only consumed in one part of Japan and it was noted there was a statistically significant difference in the rates of osteoporosis in the different parts of the country.  So the Japanese say Vitamin K2 is helpful.  Studies done elsewhere may not even have studied K2, but K1, or not distinguished between the two.  Although K1 is important for our health it does not have that effect of guiding calcium into the bones.

If you like I can send you by private message a list of some of the sources I've encountered on my osteoporosis journey.  I used to work in a library so I'm reasonably good at finding genuine authorities and valid research.

Wow, I take my hat off to you Anhaga - I'm usually quite good at research but have to rely heavily now on my laptop alone and sorting through the opinionated dross to find valid informative articles is wearing me down. Please do feel free to private message me - I will find it most helpful and thank you. I see that you posted about 20 hours ago but it was deleted by a moderator - Perhaps because you tried to send me links this way. I'm sorry that your time and input was wasted but the rules are the rules I guess. I had noticed that there was time differences between various posts - obviously I am in England!

Happy Saturday and thanks again for your time

I should just say that some of the bones sites seem to really push an alkalizing diet idea.  To the best of my knowledge, and that of my daughter who is a dietitian, there is no such thing, really.  The body is expert at balancing the ph of the blood and if it goes out of balance you are so seriously ill you are about to die.  So I wouldn't concern myself with that.  That's just my personal opinion,  I feel we simply need to avoid junk food, and should not eat too much animal protein.  The simpler we can keep things the better.  

Yes, Anhaga, spot on! I agree with you 100%. 

There is so much good food especially here in Australia we can easily avoid the processed food and rubbish. 

 

Many thanks Kathleen for your post and if I find out what my T-scores are I will let you know. I don't have access to a pool here but even if I did my fear of water would stop me going.....nearly drowned as an 11 yr old....I can't even let water in the shower fall over my face when washing my hair or just showering full stop.

?As for pain killers I have been on Codeine for imflammatory arthritis since about 2005. Need a knee replacement and right hip also. However, codeine does not touch the sciatic pain but Pregabalin does almost take it away allowing me to walk without yelping every 5 seconds. I'm afraid I simply could not sit on my non-existent recliner most of the day to ease that pain. I did not sleep for nearly 7 months at the height of the left trapped sciatic nerve...if I even moved slightly I hit the roof. GP thought this was due to the vertebra dislodging and trapping the left side nerve. I can never go back to that dark place so I take the Pregabalin even though it gets horrid press! It allows me to get into bed and out without yelping, get dressed and look after myself on a daily basis. It has its side effects but overall the balance of not being able to move at all to being able to and having some quality of life I choose to take it. I do use pillows in bed to elevate my legs firstly to reduce the oedema in my feet and legs and secondly to ease the level of pain at the end of the day. I have developed quite a high tolerance for pain with the arthritis, lymphoedema and sciatica but had truly reached my limit.

?I wonder if I would feel differently if I had a husband/Partner, and I don't know if others on this forum have - but I guess that is a unanswerable question for me. However, I sincerely hope you all get the hugs you need.

I would still insist on knowing your tscores as that is the only way you can address the problems. You will want to know any improvement you make with diet and exercise in the future.

I sneezed and caused my discs to bulge. Now I open my mouth when I sneeze and throw my head back to avoid it happening again.

My lumbar region has a tscore of -4.3 which puts it in the severe range.

Glad you are receiving support on here and it is helping you.

 

I posted before I saw this. Ido have  a husband who iis my carer. I would be lost without him.

I even have pillows under my legs to elevate them. I have swollen legs and feet too so we seem to have a few things in common.

I cannot sit on a normal chair because of the discs or walk far.

The pool is great for me so sorry you do not have that.

I do avoid painkillers as much as possible. If my hands are set off with arthritis I have to have heat pad and pain killers.

I find it better not to set off the back and I do that with the recliner and no normal chair sitting.

You have too much to put up with and sorry that you do. 

I am pleased to hear that you have the support of your husband Kathleen - it is uplifting to know that.

I will definitely get my T-score when I next see my GP and post when I do.

?I have an orthopedic chair (purchased for £40 in Age UK Charity shop) and it is as if it had been made for me personally. It eases my back considerably but I cannot sit in it with my legs and feet up. If I do the pressure on my lumbar region changes and causes pain.

?I used to live in a first floor flat with a south facing sitting room - oh how my feet and legs swelled in the summer months as I just could not shut the sun out completely. Now I live in a ground floor flat which is considerably cooler and to my joy, although my feet and ankles still swell, the legs are having a well earned break! This allows me to concentrate more on my back and making life more comfortable.  The arthritis in my hands is bothersome at the moment - started a period of inflammation about 6 weeks ago and the base of my thumbs feel as if red hot barbed wire is being pulled through them. You mention heat pads - may I ask if these help you get some relief?

?Hopefully I will start to feel a bit better in myself by stopping the AA, but will have to wait and see what marvels the NHS come up with for me to try next. I am at least more well informed thanks to Juno's post and have some knowledge to go in with now.

?I do have a younger brother who helps me get to appointments and day to day things like posting letters and picking up bits of shopping etc. He is a Godsend. Also on the plus side, I have all the time in the world to deal with personal matters and do so at my own pace. Not a conventional life but workable in the circumstances.

Thanks again for all your input  

My hands can be especially bad if cold so a heated pad via the microwave warms the hands and I take some painkillers. The pain is at least 8  as it stops me in my tracks.

i have to tilt for my back which the recliner does and the pillows under the legs bring the feet and legs to a raised position.

We seem so similar. I have mild scoliosis and arthritis in my back as well.

Thank you for sharing your struggles and I hope they are bearable for you.

 

Of course Kathleen, silly me. The microwave heated pads are excellent. I used to have 2 or 3 of these and have no idea why they haven't arrived with me at my new place....I have problems with my neck and upper spine and used to have a pad across my shoulders and neck which worked wonders. Will have to buy some more!

?Perhaps after I have seen a rhuematologist I will find out more about my upper spine as I don't know whether the pain is due to arthritis or osteoporosis. It is 15 years since I have seen one so am definitely due to get an appointment...will be interesting to know just how far the arthritis has progressed in that time. So far no scoliosis but watch this space 'cos who knows what will be thrown at me next. Having lived alone for many years I have become quite strong in mind and spirit and I will get through these set-backs. Just a couple of things I have to have done soon - one is dental work because unfortunately my teeth are becoming loose and one or two have fallen out (I am terrified of dentists because the novocaine(?) never works for about 30 mins and dentists insist I am numb when I am not - I feel everything) and second I have Dupetryns contracture in my right hand - had an op to release the little finger and ring finger 15 years ago but new tumours have grown pulling my fingers down into my hand again. Shame because I am very right handed! When I have addressed these issues I will relax for a while.

Hope the weather where you are is better than here - it has been teeming with rain for 3 hours. Happy Saturday!!

To the best of my knowledge, osteoporosis itself is not painful, but fractures can be if nerves are pressed on.  A couple of months ago I did something strange to my back, one of those things which seem so funny when you see it on television, bet are definitely not funny in real life.  I was so afraid I'd sustained a spinal compression fracture.  But it went away, and touch wood I've been fine since.  It took a while to clear up completely.  My physiotherapist speculated that I had a slipped disc, which I'd returned to its rightful position just by doing my normal back exercises.  It was excruciating while it lasted, though.  

Anhaga, I reallly know what you mean when you descrobe doing 'something' to your back and then being afraid that you've had a fracture . . you worry, then the discomfort/pain goes away for a while and you forget, then it returns etc. And you know if you go to the doc. he'll send you for an X ray - and you can't keep getting X rays . . . 

A big concern of mine is that, in attempting to help and strengthen my back by exercising, that I may actually do damage. This has meant that I'll only do exercises now that are cleared by a physio. for someone who is had fractures. I feel these to be 100% safe for me. Then, of course, there's the awful boring-ness of floor exercises but I'm trying to work on that one . . . . . !

J

Yes, these are exercises I've done for many years and to the best of my knowledge I have no fractures.  I think I'd know, wouldn't I, because they would hurt.  But I have a DXA scan coming up next week so I'll have some idea what's been going on the past year.  It may be my imagination but I do feel my back is stronger - the only part of me which does!

Well, fingers crossed!!!     J