I've been diagnosed with Ls for a few years now, but I've just recently had a letter from the Hospital, after a bone density scan, telling me I have a high risk of fracture. I'm gutted. I have none of the usual causal factors, I eat a good, mostly organic, diet with plenty of fruit and green leafy veg and dairy, I exercise (I've always had big dogs and walk miles), I never wear sun cream and get plenty of sun, I've lived in hot countries in the past too, I've never smoked, am a light drinker, haven't been on any medication and there's no history of it in my family. Nor am I overweight. I'm 54 and had an early menopause at 46, but that's surely not enough years for my bones to get brittle?
Does anyone else have LS and osteoporosis? are they linked somehow? How do you mange the advice to limit dairy and also get enough calcium? The received wisdom is that taking supplements reduces the body's ability to take it from food.
I've got a doctor's appointment in three weeks, the earliest I could get. Not hopeful about getting more than standard advice though. My brilliant, LS understanding GP has left the practice and I don't know where she's gone.
Oh BOS I am so sorry you are going through this. There are things you can do and diets that will help a lot. My friend has it but not LS. I am on the verge of it and also have LS. I chew Tums which has a ton of calcium in them and take Vit D and am out in the sun. Unless you are naked out in the sun though, I wouldn't think you would get enough Vit D. I think it is part of aging unfortunately. I am way older than you but I think it is quite common. My friend who has it very badly hikes all the time and is also a painter. So life doesn't end but I think as we get older we just have to adjust to these darn changes in our bodies. You have helped me on this site before when my 5 year old twin granddaughters were diagnosed with LS. Thank you for everything and I really respect your wisdom. I am sorry to hear of your new ill but try and look past it somehow and live your life with joy. I have been trying to do that as much as possible. Sometimes it is hard. I wish you the best!!
Hi, I have both osteoporosis and LS but don't feel that they are linked. I had a spinal fracture at just 60 quite out of the blue. I had missed my footing on the 2nd step from the bottom! Please contact the National Osteoporosis Society for lots of Information. One of the common causes is an early menopause, and family history another. Also certain medications can have an effect on your bone density. Please accept treatment, the first line is usually bisphosphonates.
I am now 73 and am having 6 monthly Injections I take Cod liver oil capsules for my joints these also contain Vitamin D. I don't take calcium but get it from dairy green veg and oily fish. The NOS will provide you with lists of food values and lots of other great leaflets go to the NOS website for lots of help. Good luck Ann
Thank you Texin, it's lovely to have your kind words. What a great forum this is!
Thanks Ann, I will look them up. I'm still a bit shocked as, apart from LS, I've always been so healthy and eaten well. The received wisdom seems to be Magnesium, D3 and K2 to help calcium absorption. I'm going to research what foods they're in now. I will take medication if that's what's offered. I have no intention of limiting my lifestyle, though maybe I won't take up snowboarding!
Hi, sorry to hear that. I know nothing much about osteoporosis but I remember reading on an IBD forum that prednisone is one cause of it and from what I can remember with the right treatment it can be reversed.
Ok.This is of interest to me. I also have osteoporosis. I am 68 but diagnosed at 65.Of course I haveLS, diagnosed at 66.I am far too young for osteoporosis. I also have HASHIMOTOS thyroiditis and have as a result had episodes of hyperthyroidism, which can deplete bones of calcium. Not sure if there is a connection between LS and osteoporosis. I haven't seeked treatment for osteoporosis because I cannot take the oral medication for it, and am afraid of the injection that stays in your system for months. If you have a problem with it, you can do nothing about it. What advice have you been given?
Well for me both conditions started when i went through an early menopause at 39. I had osteopenia at that age and also LS. My GP sent me for a dexa scan as i was high risk because of the early menopause. I was put on Hrt and both conditions “disappeared”. I came off HRT because of the scary World Health OrgNisation research back in 2004. LS practically instantly flared up and i had a steady decline in bone density which eventually resulted in osteoporosis in 2016. At age 59 i was put on a low dosage bioidentical hormone ......guess what ..... LS has disappeared again and bone density is increasing. I have done much research and am happy taking the low dosage bio idenntical hrt. I went on it because of the osteoporosis and my menopause specialist said to me to expect that after a few months my LS would greatly improve
Hi Cynthia, Please reconsider having treatment for Osteoporosis. Have you already fractured?
You are at high risk of fracturing and life becoming quite difficult. I had a spinal fracture at 60, 13 years ago but still have permanent low back pain which greatly affects my ability to walk in the countryside which I love. I can't quote the figures but should you fracture a hip the mortality rate within the first year is really high. Try contacting Osteoporosis groups or Check if you have a National Society for advice. I take the 6 monthly Injections I have had no side effects and feel much better than on the Bisphosphonates. The link between Osteoporosis and LS is of course the hormones certainly in us older ladies. Good luck
That sounds great Libsan, Long may it continue for you. Have you been in touch with the National Osteoporosis Society they are great for keeping you informed of all the latest research and treatments. Good luck
I don’t limit my dairy for a start. Yoghurt, in particular, is very good. I take vitamin K2 to aim the calcium onto the bones. You cannot get enough of K2 in your diet. I take magnesium and vitamin D3 as the latter showed up as low which can contribute to osteoporosis.
LS is more of a nuisance than osteoporosis as the latter is a silent disease.
I don’t take the drugs but concentrate on diet and exercise and vitamins.
Read all the comments in osteoporosis forums and take your time before making a decision.
If you are underweight some of the ladies use weighted vests and they start with just a very small weight.
This is one time where some weight on is actually beneficial as we need weight bearing exercise.
Hey!!! I have LS and i also have a start of osteoporosis. I’m 45 .... I think genetics and aging gets the ball going on osteoporosis. I’m taking vitamin d and calcium tablettes.... and yes.... this is the best forum ever !!
Hi Brigitte
Curses, I just tripped up a step and broke my little toe. Apparently I don't have osteoporoses there, though this is the third toe in two years, plus one finger. Grrr. The doctor told me on the phone that it's in my lumbar spine and both femur necks. I've still got nearly two weeks until my appointment and getting the meds. Do you take any bone density meds? I'm taking vit D3, K2, magnesium and calcium.
I had a thought, that when my periods started they were very extreme and I was put on the pill because I was missing so much school. The pills were more invasive than they are now and I'm wondering if this could have stopped me putting down adequate calcium reserves? Or maybe it's just age, stage and bad luck.
I don’t take any of the meds for osteoporosis. I made a conscious decision not to but rather am addressing it with diet, exercise and supplements. Vitamin D3, Vitamin K2, magnesium are main ones. Most nutrients you can get in your diet but you have to focus on the important ones for the bones. Exercise is what you can manage. Do however much you are capable of and it needs to be weight bearing like walking.
You can check your calcium and vitamin D levels in your blood tests.
People who have tiny bones naturally have less dense bones.
Go to the osteoporosis forums and read everything there!
Sorry Kathleen, but the size of your bones does not affect the density. As you age the building of new bone structure is outpaced by the speed of bone loss. This starts to happen from about 30 and the differential gradually increases as you age and factors such as early menopause taking oral steroids or epilepsy drugs kick in. I began taking bisphosphonates 12 years ago and changed to 6 monthly Injections 4 years ago. Initially my boss density was very low, but my dexa scan showed that although I still have osteoporosis in my spine my bone density has improved considerably, hopefully when I next have a scan I may be able to take a break from treatment. I strongly recommend having treatment, fractures cause a lot of pain and as you age loss of mobility can become a real problem. The drugs are designed to slow down bone loss and to help speed up new growth. Hope this helps.
If you have been on prolia for four years you need to be careful of rebound fractures if you come off. The biphosphonates before that have an impact as well.
No, I won’t be taking any of the drugs as I do not consider them safe. This is after much research. Of course everyone is free to choose their treatment but I believe the drugs for osteoporosis are in a league of their own.
Thanks for your input though!
Hi everyone, I saw this discussion and thought that with your experience with LS/osteoporosis/doctors you might be able to help. I’m young, in my twenties. Four years ago I broke my hip in really weird circumstances - no fall, I was running and it broke clean through and took 3 years and 2 surgeries to heal. I had a million investigations at the time and the doctors couldn’t find anything to cause it, although a DEXA scan showed I had osteoporosis of the spine (but not the femur). After the final surgery worked, I was discharged from all the specialists because they couldn’t find anything. This week I went to a sexual health clinic because I thought I had thrush/some infection, and instead have been diagnosed with reasonably advanced LS that seems to have come on quite suddenly (I had a coil fitted last summer and a smear two years ago and definitely didn’t have it then). I find it very strange that I’ve had two conditions that are usually associated with post-menopausal women, but am still young, healthy weight, with regular periods. The doctor intends to just treat the symptoms of LS with steroid cream, but I don’t know if I should ask for further investigations into whether there’s some common cause. Does anyone have any suggestion for what direction I should ask for? It just seems so strange. (Ps sorry for hijacking the thread but I saw all these lovely women who have lots of experience of LS and osteoporosis and thought you might have some good advice!).
I don’t limit dairy, why would I? No one has ever said anything about dairy to me for either condition. In fact, it is super important to have dairy unless you are unlucky enough to have an intolerance. What was said to you about dairy?
I have LS and my understanding is that LS is auto immune but osteoporosis is connected to things like not being able to have hormone replacement due to two sisters with breast cancer and, more recently, a niece as well. Maybe if I had realised how important hormones were to the bones I may have risked taking HRT.
I am lucky enough to have a hospital clinic that specialises in LS run by female specialists both gynaecologists and skin specialists and I have attended for nearly 14 years.
Try to find something like that if you possibly can.
Do you have your tscores to tell you how bad your osteoporosis is? Also, where are you as different countries have services to help and it is just a matter of finding them.
I take vitamin K2 to aim the calcium onto the bones and have yoghurt with that as it needs the fat for best absorption.
I don’t take the osteoporosis drugs but others choose to but I have refused them to date. I am at least halting it to an extent but I may have no choice eventually depending how bad my tscores get or if I can continue to improve my tscores. Time will tell!
Oh Papaya I think you need to find a very good specialist as you are very young to be dealing with osteoporosis.
You can control the LS but also need a good specialist for this too. Mine are gynaecologists and skin specialists at a special clinic at a women’s hospital.
I also think you need to find the cause of your osteoporosis not merely treating it. So a very good specialist is important.
You are very young so hope you can get expert help for both conditions.