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After years of asthma treatment I now have advanced osteoporosis Any ideas I don't know what to do.

Wheezykat profile image
24 Replies

I am 34 I have just been diagnosed with advanced osteoporosis I have 2 compression fractures I have fractures in my wrist knee and both ankles.  Iv been on prednisolone for 12 years at a high dose and had a surgical menopause with no hormone replacement t age 29.  Ive had regular dexa scans but 2 years ago it was low normal now this.  Ive been in hospital for 4 weeks now I cant go back to my home because of safety  I have severe asthma and its causing me issues with that due to lung expansion.

I also have 2 children and one is autistic/SPD/ADHD/dyspraxic I have been advised not to look after him on my own as he can become aggressive. My parents are great but husband is not any help at all.  I don't know where to turn any suggestions greatly received.

Many Thanks

Kathryn

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Wheezykat profile image
Wheezykat
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24 Replies

Oh Wheezykat, if it's not one thing it's another isn't it.  I'm so sorry.

There is a National Osteoporosis Society which you might want to contact.

nos.org.uk

If that doesn't work, just google 'osteoporosis' and the society should come up.   It's UK based.  I don't know if they have a similar set up to AsthmaUK, but it might be worth taking a look.

Maggie

linlow profile image
linlow

Has your gp not given you anything to counter the bone loss from prednisolone and your hormone changes???? tschh! 

You can't do very much at the moment but once your bones are healed look into rebounding.  This uses a small trampoline to do weight bearing exercise and has been proven to increase bone density with just 20 minutes of bouncing a day.   rebound-air.com/rebounding-...  youtube.com/watch?v=m9q4yPm...  It also improves coordination and reflexes so helps reduce the likelihood of  breakages from falls.  When (if) you start, do the most simple bouncing exercise where your feet do not leave the trampoline until you have the hang of it.  There are loads of videos on youtube that will give you training ideas.

Have you been taught about the benefits of diaphragmatic breathing? youtube.com/watch?v=fKhgOle...  breathe.ersjournals.com/con...

Wheezykat profile image
Wheezykat

i had alendronate the bouncing i cant do because of my asthma and i do that breathing as well.  The NOS is great but the info is all aimed at older people

linlow profile image
linlow in reply to Wheezykat

In research rebounding has been shown to improve asthmatic conditions.  Because of its nature it can be used as a very gentle form of exercise that does not exacerbate breathing problems, you don't actually have to be bouncing into the air to begin gaining benefits from it.

Investigate kefir (home made). Its anti-inflammatory properties help asthmatic conditions ncbi.nlm.nih.gov/pubmed/178... and its bone building effects have been shown to reverse osteoporosis.

Have you tried lemon water?  A lot of asthmatics report positive benefits from drinking it 3 to 4 times a day.  The addition of ginger and local honey may help increase it curative powers.

diana-stoyanova profile image
diana-stoyanova in reply to linlow

Geez, you're so full of knowledge! :O I wrote everything down and started doing the breathing exercises! But about the lemon water, do you happen to know how and why it helps with asthma? Also, isn't honey supposed to be a no-no for asthma? That's what I was told at least.

linlow profile image
linlow in reply to diana-stoyanova

Although acidic in nature, once consumed, lemon juice turns alkalising in the stomach and helps reduce systemic inflammation. Adding it to warm water augments this change. Lemons are an excellent source of vitamin C as well as being rich in anti-oxidants. They are known to be highly effective as a preventive in the treatment of various ailments. The juice has been noted to cut through and decrease mucus blocking the lungs and sinuses. This site hubpages.com/health/Does-Le... explains the asthma connection quite well. Bottled juice does not work in the same way.

Amongst other things, honey's anti-allergic and anti-inflammatory properties can help prevent asthma attacks triggered by allergic reactions. These benefits cannot be achieved with processed honey, which is why I suggested local honey be used. Maybe that is why you were told it isn't of use.

Ginger has a bronchodilating effect as well as reducing inflammation of the airways.

Something else you might like to investigate is tincture of lobelia. Mixed at a ratio of 3:1 with tincture of capsicum it can be taken in water to calm acute attacks.

Good luck with the diaphragmatic breathing. If you can work it into your lifestyle you will notice the difference. I was talking to someone, on Friday, who noted how much more energy she has since recently starting to use it full time.

On the subject of breathing, take a look at hyperbaric oxygen therapy (HBOT) and the benefits to be gained from that.

There are many other natural remedies that may be at least as, if not more, effective for reducing or preventing asthma attacks though, as with any treatment, not everything works for everyone.

My interest in the principles of natural remedies was aroused as a young teenager, after watching a documentary on the destruction of the Amazon rainforest. As they filmed the indiscriminate clearance, the presenter was lamenting the loss to medical science (and the indigenous peoples) not just of many known natural remedies but of all the still uninvestigated ones. Being highly sensitive to allopathic medications the suggestion that alternative methods of treatment could exist had me hooked.

Over the years Big Pharma has spent megabucks to discredit natural cures and blinker the medical profession to their efficacy but the internet is now opening up a pathway to redress this atrocity. It is a bit off topic but take a look at the first half of this video to learn how they did/do it youtube.com/watch?v=NAMYAoi... Then apply the same idea to your own condition. It is possible that prescription medications for asthma, being suppressive in nature, in reality perpetuate the condition thus reducing any chance that it might disappear on its own.

diana-stoyanova profile image
diana-stoyanova in reply to linlow

Thank you for the bunch of information! I am also interested in the natural way of working out through your illness... mostly without any medication. I am a firm believer your mind is your best friends as well as your worst enemy. Anyway, I've been practicing this type of breathing pretty much my entire life, I just had no idea it was the better one. What I did now was include this type of exercise into my routine just so that I could set my mind to believe I was doing much better with my breathing. Funny what kind of things you can achieve if you make yourself believe. Anyway, my doctor thinks food is not connected with your asthma at all so I can't discuss that type of things with her - she only told me to pay attention to what irritates me personally and avoid that. But a fitness instructor who has studied medicine advised me against some types of food that are generally not a good idea if you have asthma. From the things I read here she was generally correct (without all the explanations naturally).

linlow profile image
linlow in reply to diana-stoyanova

I do hope that the doctor you refer to is not an asthma specialist!! The film above explains why most medical practitioners are so blinkered but it does nothing to placate the annoyance their small mindedness evokes. What it also doesn't explain is that the nutritional element of most medical degrees amounts to about 3 hours total. Nowhere near enough to qualify the statement she made. Check out 'metabolic disorder & asthma' on google then look up 'metabolic disorder diet'. If asthma can be connected to metabolic disorder on some level at least and metabolic disorder can be controlled/reversed through diet how can the two not be connected?? :( One up for your fitness instructor though.

You would be better off seeking guidance from a functional practitioner if you can find a good one - or just resort to trawling the internet.

mindbodygreen.com/0-7440/ho...

Vivante profile image
Vivante in reply to linlow

Tests were done on mice, that does not count. Ginger should be avoided by people who are on Warfarin. A little more research is needed. Person can lose balance and end up with further fractures.

linlow profile image
linlow in reply to Vivante

or, conversely, warfarin should be avoided by people on ginger. Ginger, which has been tried and tested on humans for 1000s of years and is of proven benefit for asthma, is only one of dozens of foods that cannot be taken whilst on warfarin. Warfarin is a health risk - I know which one I would rather take. :)

in reply to Wheezykat

They do advertise a helpline - did you give them a call?  

Osteoporosis does affect younger people; certain medical conditions increase the risk of it occurring in younger generations.

Moonbear profile image
Moonbear

Oh bless you I know exactly how your feeling. I have Brittle Asthma and was diagnosed with advanced Osteoporosis two years ago, my bone scan showed that I have the bones of an 80 yr old and I am now have to be in a wheelchair and be very careful with what I do. I have brought up 4 sons, it was very hard work especially because I spend so much time in hospital, it like my second home. 

I can understand why they've said to you that it's not safe for you at home, and that you need help with your son. I would accept every piece of help your offered. I have a very caring husband and family without there help, I couldn't live life safely my life would be terrible.

I want to say I'm thinking ofyou. I know how your feeling, asthma on its own is hell to live with, but with osteoporosis is not good. I've broken both my feet at the same time, just getting about was hell, then once the were taken out of plaster it was even worse I had physio everyday for months. But my back has it worse I need surgery on it but can't get anyone to do it, because of my Brittle Asthma. Here if you ever need a chat.

Oh Dear Kathryn I am sorry

Mum has been having a calcium mix drip you can do it once a year told her the rhumatologist. Try to find out about it. She has osteoporosis and multiple fractures although she never had steroids so I just had a bone density scan and the doctor gave me a calcium vitamin D complex but I read prevention is useless . For years Mum had this once a week med you have to take standing up for half an hour.

Take carexxx

diana-stoyanova profile image
diana-stoyanova in reply to

I am always amazed by how much people here know and have been through... damn it. Do you think it's a common side effect of the steroids to decrease bone density? I'd never heard of it before this post but I am generally still too ignorant about all this.

freefaller profile image
freefaller

So sorry to hear about your situation.  I cannot believe that your GP did not give you anything when you went into chemical menopause at such a young age.  If HRT was not an option then there are prescription calcium medication that could have been given.  I hope you are able to access physiotherapy which can be beneficial for everything you suffer from.  As for your husband I don't know what to suggest why is he unable to help you when you are in need of help and support?  Is he scared of illness in others?  I know plenty people who are.  Maybe some counselling could help.  I really hope that you find something which helps you.  I am so glad to hear that you have supportive parents who obviously live close enough to you to help.

All the very best

Sian

freefaller profile image
freefaller

Just as an afterthought you should contact the help line and osteoporosis society to make sure that you are claiming the benefits you are entitled to.  The Citizens advice is also a good place to go too.  As they say every little helps.

What a dreadful situation to be in.  After cancer treatment I was given Alendronic acid and high dose calcium to counteract the effects on my bones.  Also weight bearing exercise was recommended but I guess you don't get much time to yourself. Sounds like you need a lot more help than you are getting.  Is it time to push for a Carer's assessment?  All the best, thinking of you.

emmasue profile image
emmasue

What a terrible time you are having!  My asthma isn't as bad as yours but I do have two children, at least one who is ASD/SPD (the other one we aren't sure yet).  I don't think people realise how much extra work children with special needs are.  With regards to your husband, have you consulted a family support worker?  You may be able to request one through school.  The family support worker may be able to help your husband to understand his children better.  She may also be able to direct you to proper support services.  Another possibility is Parent Partnership, but I am not sure if they are more school related.  The other option is to contact the National Autistic Society.  They may be able to point you in the right direction.  Make sure you find support though.  Don't try to do this on your own.  I hope things get better soon. x

diana-stoyanova profile image
diana-stoyanova in reply to emmasue

Hey there, I know it may sound exceptionally rude of me but I am only going to ask out of sheer curiosity - because I can see that most of the guys here who have been on hardcore medication for a while seem to have children with ASD etc, do you think these two occurances could be connected? The medication affecting your future/potential children?

emmasue profile image
emmasue in reply to diana-stoyanova

I don't thinks so. I am pretty sure in our case it is genetic. As we are becoming aware of what ASD is, we see most of the traits either in my husband, myself or even our parents and grandparents. Having Aspergers, in my son's case, is a combination of being intelligent and focused on one hand but being highly anxious and socially awkward on the other. If he is supported correctly, he will end up in science or academia. His father and my father are physicists and at the age of ten, he is watching TV shows about quantum physics, dark matter, and whether there is life on other planets. So having Aspergers, in a way, has given him this amazing brain that thirsts for knowledge. Now we just need to help him control the anxiety and learn to cope with others.

In my daughter's case, it is a bit more difficult because she has communication difficulties and learning difficulties. But you can see a lot of her father in her as well as a lot of my grandmother and my sister. I think because ASD is only now being diagnosed widely, we seem to think it is a new thing. If my husband had been born recently, he would definitely be classed as Aspergers. If my father had been born recently, he would have been diagnosed as ADHD by the time he had started school! His sisters agree with me there! But because they were born at a time where only those with the severest difficulties where treated, they managed to make it through school and have a life. That doesn't mean that they didn't have difficulties. They both did and still do! But it is only children today who are getting the help.

Sorry for the long post. It is something that I have considered a lot. Another friend with an ASD daughter thinks in her case it was caused by IVF (eggs removed, fertilised with husband's sperm and then re-implanted). With an increase in assisted fertility, that may be a reason why there are more cases, however, that is anecdotal. As for a majority of the children I know with ASD, their parents would say it is genetic. However, even with a genetic component, maybe there is something else going on, but I wouldn't know what. Or it could just be the way we raise and educate our children has changed drastically in the past 30 years. At the moment, no one seems to know for sure.

Wheezykat profile image
Wheezykat

Thank you everyone your support is invaluable Im contacting various people im still in shock to tell the truth and im still in hospital the hardest thing im finding is making people rrealise that just cuse im yong doesnt mean im more capable and im very obese due to steroids etc and they just kep sayingyou need to loose weight yea ok but youve just given me 7 weeks of 400mg IV hydrocortisone every day! grr i just dont know what to tackle first! x

linlow profile image
linlow in reply to Wheezykat

Doctors and hospital staff do have their place but, unless they have had to go through coping with the same problems, their understanding can be a little lacking

From experience having to cope with the extra weight makes everything else seem so much worse.  So when my specialist recently put me back on medication I know full well, from previous experience, piles the weight on the first thing I did was start looking into diet.  After a lot of reading I settled on designing my own diet based on a sort of cross between the mediterranean diet and LCHF.  To start with I lost all the weight I was still carrying from the last time I was on these tablets and felt great.  As the tablets have now kicked in, the weight loss has slowed to ounces at a time instead of pounds but I am still just about losing.  But what is more important - I am NOT gaining.  It includes lots of nuts and avocado to reverse bone loss too.  Win win :)

diana-stoyanova profile image
diana-stoyanova in reply to Wheezykat

I'm totally with you on this one! People tell you "yeah, you're going to gain some weight because of the meds" but then they tell you "just lose that weight, what's the problem, you just don't want to work on it"! Let me tell you, we DO want to work on it, it's just the meds messing with us! I can see you're having an exceptionally tough time but if you find at least ONE friend/relative who can stick by your side and support you, you WILL be fine! If not in real life, you've got all of us here to support you! <3

Vivante profile image
Vivante

Please do not use a rebounder, too many risks. Look for the Meeks institute articles. More information provided by American osteoporosis website. Avoid any exercises that compress the airways, such as forward bends, twists, extreme side bends. International osteoporosis foundation a good site. Do not raise your arms if you have vertebral fractures, avoid the all fours (the cat pose), risk of wrist fractures. Do not put weight on your knuckles, damage to the fingers. Look for osteoporosis New Zealand.

Simple exercise for the breathing, arms at side of body, inhale as you raise your arms, exhale as you lower, don't raise your arms above shoulder height. Inhale as you lean back slightly, do not overdo it. Please do not exercise outside in the heat, or during the high pollen count season, please do not lift your children. Look for safe movement sheet provided by American society.

I wish you well. There is so much you can do. Please do your own research regarding

complimentary therapies

I hope info provided will be useful

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