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Newly Diagnosed and lacking information

GailAnderson profile image
39 Replies

I thought I was entering the prime of my life... loving every moment, running, walking, cycling and travelling whilst enjoying great local produce...as I love my food and wine 😊

Then fate struck and I started to get little niggles... injuries that didn't quite heal, or morphed into something else... but being the kind of person I am I just kept on pushing, changing the workout slightly to adapt to that weeks' 'issues'...but they got worse and didn't go away. I saw the doctor several times and several physios, until finally the pain in my ribs and back - was so bad I felt something really wasn't right and I had XRays and found that I had fractured my T7 and L4... and most probably cracked a couple of ribs... which by that point had healed....its quite funny when I look back, but at least I know know why I was suffering so much. The fractured T7 was... and still is pinching on the Thoracic nerve, and the fractured L4 will explain what completely stopped my in my steps back in October last year.... I guess I won't be running any time soon!

With information in hand I started to take it a little more seriously and understood that I couldn't just push through this, this time something wasn't quite right and I decided to get a Dexa scan done privately - I am very grateful that I am lucky enough to have been able to do this (NHS was going to be at least 9-12 months) which highlighted -3.4 on spine and -2.4 on the hip.

I am now in a Brace, hoping that the fractures will heal and I am waiting my next xrays on 30th April and an appointment with the Rheumotologist on 13th May to understand the next steps as I feel like I am in the dark.

I have a pretty good diet with loads of vegetables, dairy, grains, seeds, nuts and fish and since the diagnosis three weeks ago, have already increased a couple of areas that I felt may have been lacking a little, like adding Prunes for K2, tinned salmon - sorry I really can't do tinned sardines - and I really hope that I will be able to start swimming early in May and then strength training but have no idea whether this will be possible.

I would love to hear from people who have had an active life and are of a similar age group and have managed to turn this around and live a full and happy life.

I am scared of what is around the corner and appreciate that my life has changed for ever, but I am hoping that where one door closes, another will open... I know I will have to manage the pain, avoid falling over.. and possibly not run 10km 6 days a week... but I am happy with that if I can be healthy and enjoy longevity ... and maybe some other form of exercise...yep I am a fanatic 😂

Most importantly though, thank you for letting me be part of this group as I have already seen posts with information that has given me hope. I hope that at some point I will be able to give back as much as I am about to soak up from you all in knowledge and experience.

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GailAnderson
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39 Replies
Sunnygirl69 profile image
Sunnygirl69

Hello Gail, your story is so similiar to mine but I'm older than you at 56. At 53 I was diagnosed with osteoporosis in spine only TScore - 3.3Like you I've always had an active life, walking, travel etc etc. Last year I took up running & had great year completing a half marathon in August. Beginning of Oct 2024 I went to strength class, so many shouting bout the importance of lifting weights & I suffered compression fractures T6 & T7 as a result. Like you I had to wear TLSO brace for 6 to 7 weeks, a horrible time. My endocrinologist put me on HRT & I'm now on this treatment approx 10 weeks. I also take a strong calcium tablet with vit D & magnesium. I drink glass of soy milk every morning now. My consultant took bone turnover bloods just before I started & will get done again after 3 months on HRT. Even when wearing the brace I kept walking & now I'm happy to say I'm back running but only twice a week & shortish runs, mayb one 5k & one 8k. Still I can get pain while sitting at my desk at work or sometimes out of the blue. I am still attending a physio & find the stretching exercises very good. Things do improve. You will get through this initial really hard time, it's so upsetting. Don't give up on all the things you love doing, you might just have to modify a bit going forward 😊

GailAnderson profile image
GailAnderson in reply toSunnygirl69

Thank you...it's nice to hear that its not just me, and it appears from the feedback that there are lots of similar minded people out there. It sounds like you are Vegan/Veggie and lack in some of the areas I possibly don't lack in... as although pescatarian, I do drink lots of Kefir and eat dairy - its a complex balance! I am slowly getting my head round it and the more people I talk to, the easier it is getting - so your comments are really appreciated

It's great news that you have started to run again, albeit not great that you are still in pain. I guess it is just going to be a matter of finding the right balance of activity and pain levels, something both you and I will always struggle with and probably push too far before needing to pull it back in again.... just a personality trait I guess!!

I am keeping up my morning exercise routine as I used to run at 7:30am - but instead I walk for an hour before my shower and breakfast....it's the best part of the day and helps me get my head straight before the cold shower and days activities!! I am hopeful that after the next round of xrays - which will be 5 weeks of wearing the brace (albeit probably a good 3-6 months after the breaks) I will be able to start swimming and possibly also some cycling. I also have a physio lined up to help me with the strength training once I can be sure I am not going to cause more damage as I know I am too irresponsible to take that step on my own currently and will be trying to do burpees within a couple of weeks!

This has really helped thank you, it is refreshing to have some mental support as I have been struggling with finding anything that isn't focussed on the 'less active'. I am also trying hard to focus on the positives, not the negatives. I would love to share a glass of wine with you and chat about our journeys one day, I am sure there would be a few laughs as well as recognition of stupid actions!!

Fruitandnutcase profile image
Fruitandnutcase in reply toSunnygirl69

I bought one of these chairs years ago when I first had back problems and found sitting down very uncomfortable / painful and I wasn’t keen on the other option which was lying on the carpet while my two young boys and their friends stepped over me

I find the seat very comfortable but my husband hated it when he had a bad back so I think it’s something you need to try out for yourself

ergonomist.co.uk/products/e...

GailAnderson profile image
GailAnderson in reply toFruitandnutcase

ok.... so just to make you laugh even more... I live full time in a motorhome - to be fair it isn't a VW campervan... but not going to be getting any kinda custom chair in here 😂

Fruitandnutcase profile image
Fruitandnutcase in reply toGailAnderson

🤣🤣🤣 lucky, lucky you living in a motor home. Definitely no chance of getting that sort of thing in it. Do you live in the U.K. or abroad?

We used to have a camper van - a van conversion so it wasn’t tiny but we decided to get rid of it in 2019 because we only used it for a few weeks in the year - we both had commitments, I have my Pilates and an art class and my husband goes to a camera club and volunteers and they are all things that we wouldn’t want to give up not even to go away and we have a garden that used to go berserk when we left it.

I really do miss the camper though, I actually bought us a tent in 2019 and we went camping in the south of France but the packing everything up to move from site to site got to be such hard work that after three weeks and four camp sites, in searing heat and ground so hard that at one point we had to find a Mr Bricolage to buy a replacement mallet and stronger tent pegs I said to the German couple on the final campsite that I felt like just driving off and leaving the tent behind.

Funnily enough in spite of my awful back I’m fine at ground level and my back always felt really good when I was camping both in a tent or in the camper, in actual fact talking about things we may have to give up I’d say accepting that my camping and camper days are over although not because of my osteoporosis has been quite difficult for me 🚐🏕️☀️

Welcome to the group no one wants to belong to GailAnderson. No one wants to discover they have osteoporosis - especially not when they are your age. I think it would be worth going online and having a good look at the pages on here if you haven’t done so already theros.org.uk,

Another site I really like is melioguide.com, it is owned by Margaret who is a Canadian physiotherapist and I like what she does, she is very sensible and gives a lot of good advice. I have a couple of her books plus a couple of her exercise videos and I feel confident and safe when doing them.

My favourite exercise is Pilates and I do two hour long sessions a week with a teacher who is a physiotherapist who has a particular interest in older people with osteoporosis, I can also recommend nordic walking, I don’t use my poles so often now but when I managed to fracture my sacrum they were my best friends.

Good luck with it all.

GailAnderson profile image
GailAnderson in reply toFruitandnutcase

Thank you. Yes, you are right....its probably worse than being the last one picked for the hockey team at school and ending up in goal. No-one wants to be part of something that means you are no longer able to achieve something you have been doing for so long through no fault of your own.... but things change and I think I have now done a fair part of my mourning as such.... its been a rocky three weeks, but I am slowly getting my head round life changes and I plan to embrace them as much as possible.

I have been onto the ROS website and had a look around, but hadn't come accross melioguide.com so have just had a quick look and will do some more reading later as it looks great. The spine and also the feet are so key to us having good posture and reducing further issues. I am keen to work on core strength so this website will be a great help to do it in an 'osteoporosis friendly' way!

I have toyed with Yoga and Pilates previously, but always got distracted by more intense activities so now is the time for me to look at them in more detail once the back has healed and I can bend and twist with confidence... I am confident that it will actually be good for me to get more of a balance, its just a mind set change.

I really appreciate your comments and suggestions and I like the idea of doing a Pilates class with someone to help me get started and ensure that I am also doing things correctly to get the most out of it as well. Thank you so much for responding to my message, it is hugely apprecaited.

Fruitandnutcase profile image
Fruitandnutcase in reply toGailAnderson

Choice of Pilates teacher is very important, they should want to know a bit about your medical history and any problems you have - maybe even do a one to one before you join a class, we are so lucky with our teacher. She knows our bodies better than we do ourselves.

You want to be in a very small group where your teacher can keep a close eye on how you are moving - form as Margaret would call it. We are always being told that if something causes pain then we must stop it right away - even if it is something we have done before and even if it is something our teacher has told us to do.

CinnamonRose profile image
CinnamonRose in reply toGailAnderson

Be careful with bending and twisting Gail, both can cause unwanted fractures!! I do bend with care but twisting is a no, no, you need to work out what's best for you. Welcome to the club nobody wants to join!!

BlueWilbur profile image
BlueWilbur

I broke my upper arm a year before retirement- I had to wait a year for a bone scan and was horrified to find I had osteoporosis-?my spine is -4.7. I joined the royal osteoporosis society (ROS) which was a game changer for me. There is so much misinformation about. I’m terrified of spinal fractures but I lead an active life of running, walking, gardening etc. I lift things I perhaps shouldn’t but I don’t do any weight training because I’m scared of damaging my back.

I don’t take calcium supplements because I get enough calcium in my diet. I’ve been diagnosed for 5 years now and feel so healthy. I’m an active member of ROS because this disease is devastating and I want to promote better awareness and understanding of preventative measures people need to take to keep their bones healthy. It’s a horrible diagnosis to have but if mine had been sooner in my life perhaps my high t scores now (I’m 68) could have been prevented.

GailAnderson profile image
GailAnderson in reply toBlueWilbur

Thank you for your reply. I agree, there is such a huge amount of information out there, it can be incredible missleading and very scary. I joined a couple of facebook groups and couldn't read some of the posts as my stomach kept churning with horror. I know it is ironic, but I feel incredibly lucky that I have found out that I have an issue now, before it has got even worse as I am hoping I will be able to turn it around. The worse it gets - and the older we get - the harder it is not just because of the weakness / bone density, but also because our bodies simply don't absorb the same level of nutrients.... I'm already struggling as I am peri-menopausal and conscious that I need to listen to my body that much more, and adapt and change my diet and exercise appropriately.

I agree though, ROS is doing a huge amount of work, and there is a lot of support there, it is just lacking a little for 'active' people... or I haven't found the right place yet. I think I also don't have a very good support network near where I live which may be causing a problem as no-one has come back to me regarding face to face meetings, etc.

I will keep positive though, like you, and keep on pushing to be active ....whatever that may mean on the day!

Thank you

BlueWilbur profile image
BlueWilbur in reply toGailAnderson

bjsm.bmj.com/content/56/15/837

the above is a robust consensus statement on exercise - keep off dr google and continue to enjoy life

GailAnderson profile image
GailAnderson in reply toBlueWilbur

So true. I just can't currently do anything high impact... but not ruling exercise out completely, quite the opposite, looking to embrace new methods to get those endorphines 😊....and I so agree that this doesn't mean life is over - just makes me want to grab it even more and make the most of it. Thank you... you have made me feel even more positive.... so lucky to have found this forum.

BlueWilbur profile image
BlueWilbur in reply toGailAnderson

What area do you live in? I’m Aberdeenshire

GailAnderson profile image
GailAnderson in reply toBlueWilbur

We live in a motorhome ...but are based near Windsor....although we have wheels and will travel 😂

Depending on the appointments over the next period, we may venture back up to Scotland again if we can't get over to Europe, so if we are heading your way I will let you know!

BlueWilbur profile image
BlueWilbur in reply toGailAnderson

Please do!

dcdream profile image
dcdream in reply toBlueWilbur

do you take osteoporosis meds?

GailAnderson profile image
GailAnderson in reply todcdream

Not sure if your question was to me or to Blue Wilbur - but I don't yet as I haven't seen a Rhuemotologist, my appointment is on 13th May. Hence why I am so in the dark about all this info.... noone has told me anything apart from the fracture clinic who wasn't particularly helpful... I had to point out to him that I had ready the Dexa scan and it stated that I had Osteoporosis. He did refer me though, so I guess I am grateful 😊

dcdream profile image
dcdream in reply toGailAnderson

Yes, you are correct. I was wondering if Blue wilber took osteoporosis meds. I have your exact same scores. diagnosed with osteoporosis at 59 and now 71. Haven't had a dexa scan since age 68 but those were my scores. I am looking into a Rems scan for this year. That said, I know how you feel and share your sentiments. It's always on my mind and I'm highly active, eat well, work out, hike daily, etc. It's almost like a betrayal of my body......that said, there's lots of info out there and it's difficult to figure out what's right for you. I continue to read about this every day and try to live my life the best I can. We can't enjoy life if living in fear and pain. Welcome to the site and I hope you find a path you are comfortable with. Hang in there!

dcdream profile image
dcdream in reply toGailAnderson

also, although I do not take meds, I do pilates once per week, yoga once per week, weights 2 x per week, hike/walk 7 days a week. I also include in those work out routines above posture, balance and correct body movements, all with the hope that I can eliminate falls. I also completely cleared my home of anything that could increase falls. The idea is to avoid fracturing. To my knowledge, I have no fractures but it's a silent disease so who knows. Nor do I have the horrible pain so many suffer from with this disease. I'm lucky so far but my mom did all the meds and protocol and still fractures every year even though she gets annual infusions. She's 93, lost 5 inches and has a bad hump which has created all kinds of other health issues. She also developed terrible Gerd as a result of the osteoporosis meds and it seems like each side effect has brought on new meds to counter them. It's dismal.

BlueWilbur profile image
BlueWilbur in reply todcdream

I was on amendronic acid then had to change to risedronate and just recently had to stop that because of bad indigestion/ I’m waiting to see a rheumatologist to discuss next course of treatment- I want to be taking something! I’ve had 3 weeks off risedronate and might start it again tomorrow and hope the indigestion doesn’t come back. I don’t know what the waiting list is like and I don’t want to compromise my bones any more than I have to

dcdream profile image
dcdream in reply toBlueWilbur

Do you take osteoporosis meds?

Calciumgirl profile image
Calciumgirl

I'm so sorry to hear your story.My life was turned on it's head last August after feeling,like you,in the best shape of my life.An osteoporosis diagnosis was worse than breaking my arm following an accident.I wish you well in your recovery.I still don't feel like the same person after my diagnosis last November.I fear falling and recently,have done, but I seem to be ok.Always overthinking what I'm doing,watching the pavement for trip hazards.I'm 58 and feel a shadow of myself.

GailAnderson profile image
GailAnderson in reply toCalciumgirl

I hear you. I am choosing my steps carefully... although I do think that the lighter on our feet we can be, the better. So doing exercise and having a strong core strength, having the flexibilty and agility from Yoga, Pilates or Tai Chi will also help you get out of a situation if you do stumble for whatever reason.

What have you stopped doing since you were diagnosed? And what do you want to try and start doing that will take your mind off of those 'trip hazards'.....

You are too young to be feeling a shadow of yourself. Somehow you need to work out how to build up your confidence somehow, little by little. I am sure that from the answers I have recieved on here, if you share a little more, some of us may be able to support and help you through this.

Calciumgirl profile image
Calciumgirl in reply toGailAnderson

Hello- I haven't stopped doing anything since my diagnosis.I continue to do my normal fitness classes and live my life.I had regained a lot of my confidence as I always have been a confident person.I try to be as positive as possible but some days are hard.I think my recent fall,just upset me and set me back a little, but I'm recovering from that.I continue to do my physio to help improve my shoulder and arm strength.I had to have a reverse shoulder replacement and I know that it's important to continue doing that.We all have up and down days and my last post reflected that.It is good that we can say how we really feel.We all try and adjust to being more mindful following an osteoporosis diagnosis.It doesn't stop you from being angry though about the diagnosis. Also, being treated as an old lady is infuriating by medical professionals.We all need to be as well informed as we can be.I ,sometimes, think we know more than the GPs sitting in front of us

GailAnderson profile image
GailAnderson in reply toCalciumgirl

Thats good to hear... well, the bit about the fact that you haven't stopped doing anything 😊

I agree, and understand what you are saying... there are good days and bad days - sometimes the bad days are just a little 'off colour' and lacking in motivation... sometimes they are a lot worse, or at least that is my experience over the last few weeks. As you say, that is why it is important to have a support group and I am appreciative that I have found this one, although would also like to meet up face to face with some people. Do you know if there is any way of adding details of location and finding people who are close by and getting on contact? or is that something that isn't possible here?

Calciumgirl profile image
Calciumgirl in reply toGailAnderson

Sorry,I don't know the answer to your question about locations

hslawton profile image
hslawton

I would also suggest taking HRT if you are able! Oestrogen will help tremendously with bone strength. And perhaps think about seeing Dr Nick Birch at Osteoscan - Osteoscan have clinics around the country and offer REMs scans, which tell you about your bone quality (which Dexa scans don’t do!). The chat afterwards with Nick is very helpful and reassuring.

GailAnderson profile image
GailAnderson in reply tohslawton

Thank you. I have seen Nick's name come up quite a bit on several forums and looked up his details. As I have already had the scans and I am in the NHS process now with only a few more weeks until the next appointment I thought I would hold off to see what they say first.... but I am keeping Nick in my back pocket as an option ... it is great to hear that he comes so highly recommended.

Interestingly I have been trying to stay natural from a Menapause perspective but over the last 24 hours, seeing so many comments on this site I will probably arrange to see my doctor and discuss HRT as it sounds like the benefits may outweigh the negatives.

CinnamonRose profile image
CinnamonRose in reply tohslawton

I've got an appointment May 8 th with him, it can't come soon enough!!

corcho profile image
corcho

Hi Gail and welcome to the group which I'm sure you'll find very supportive.Just like you, I love running and hiking and a year ago was running between 10 & 15km twice a week. Last summer I was doing a long distance hike when I skidded in a wet, muddy patch and flew up in the air then landed hard on my sacrum. To cut a long story short, I tried to return to running after a couple of weeks but the pain worsened. No joy from the NHS and a misdiagnosis from a GP. I paid for a private consultation and MRI and discovered that I had tiny hairline type fractures to my sacrum and pubic rami. These didn't show on X-ray. I paid for a Dexa scan and discovered that I have osteopenia in my lumber spine but my femoral neck (hips) are normal. Although these scores aren't too bad for my age (almost 69) my profile is classic for osteoporosis, small build, mother had bad osteoporosis and I've never had hrt. For this reason, I've decided to take Alendronic Acid for just 3 years then pay for another scan, I've joined the gym to do resistance and work with weights and although I've always eaten very healthily, I've made a few adjustments (mainly reducing my wine intake 😉)

Fast forward nine months and I'm feeling much happier and more important, more confident. I've just hiked one of the Spanish caminos, carrying my own backpack and am running 5km on the treadmill. I'm going to venture outside to run again soon but I must admit to feeling a bit nervous as my fractures were like stress fractures, although they did follow a hard fall.

This diagnosis is a frightening experience and when you're fit & sporty, it's a real shock. I assumed that my lifestyle made me invincible! The best advice I can offer is to do lots if research and then do what is right for you, we're all individual. The ROS are excellent for providing unbiased support and advice (be discrimitory with some of the quackery on the Internet) and be reassured that your active lifestyle is not over. Some adjustments may be necessary but if you can afford a couple of sessions with a good sports physio, they can set you on the right path when you're ready. Good luck, try to keep positive and keep us updated on your progress. x

GailAnderson profile image
GailAnderson in reply tocorcho

I feel a bit odd to say 'I am so pleased to hear that' - as I don't want anyone to have gone through what I have gone through.... but at the same time I am so grateful that you have shared your story with me. To be honest, years ago, I was inspired by an 80 year old running further and faster than me and I set my target to grow old being fit and healthy enough to eat and drink what I fancied... never thought about something like this taking me out.

It is however, as you say - and I am become to appreciate - just a hurdle...and despite never having been very good at hurdles, I do know that with a bit of determination, training and the right support, you can do anything.

I had actually signed up to 6 physio sessions with a really good rehab physio when I couldn't get back into running so have someone to go back to once I am able. As you, and others have said - it is about getting the right support now. Thank you... I will let you know how I get on.

The Camino de Santiago is beautiful - I am sure that you are planning to do more of it if you have sampled some of the Basque food and wine. We spent alot of time in Spain and love the Northern region especially... despite the rain!

Good luck with taking your running outside... maybe avoid trail running and go for roads/pathed routes to start... I think that is what I would try anyway as I am always tripping over myself! 😂

corcho profile image
corcho in reply toGailAnderson

Yes, I love Northern Spain and have visited many times. I decided to learn Spanish in my retirement to try and keep the brain active too! It's not as easy as learning when younger, but I keep at it.I feel like you that there is no support group in my area and would love to meet up face to face with other comrades, (I won't say sufferers) I've almost though of setting up a group but I lead such a full life, that I'd end up spreading myself too thinly. Whereabouts are you? I live on the south coast, quite an elderly population, so extra strain on resources. Lack of funding for osteoporosis is dire, this country seems to forget that prevention would equal massive savings in the long term.

Glad that you've reached out on this group, it's always positive to chat with like-minded people.

Rathimata profile image
Rathimata

Thank you for sharing your story - it’s so similar to mine apart from our ages. I’m a little older (63) but still felt I was too young for this awful disease to stop me in my tracks. The last year has been a time of life changing adjustments that I just never imagined I would have to make. I live overseas so navigating the world of scans, medication, exercise and support has an added layer of complexity - language and culture can be challenging at times when I’m not sure I have the emotional energy left to deal with any of it. I applaud your positive approach and wish you all the very best. Maybe with the right medical support, medication, diet and exercise you can at least maintain if not improve your bone density as you get older. Take care.

GailAnderson profile image
GailAnderson in reply toRathimata

Thank you. Age is just a mindset, and we are all conscious of 'older' people getting this awlful disease but I hadn't ever heard of anyone 'young' getting it... and when I mean young, I mean fit, healthy and outside a nursing home. That is of course my naivety.... nothing to do with facts - I just wasn't aware and now I know, I am planning to try and help others become aware.

Whereabouts do you live? and what life changing adjustments have you made if you don't mind sharing? It sounds like this is a great community for support and I am keen to understand more so that I can not only learn for myself, but also support others...you never know I may have ideas to help you out too!

We travel extensively through Europe and lived in Spain for a while so I completely understand your issues with the health systems and language barriers. I hope that you have all the support you need close to you and a network of people you can talk to on both good days and bad.

Headinjuryhypo1 profile image
Headinjuryhypo1

I'm so sorry your life has taken this horrible turn. Can I just contribute the fact that growth hormone deficiency can cause osteoporosis - it's a not unlikely cause if you ever had a concussion or worse head injury. See NICE TA64 Clinical Need and Practice. I hope you heal well and can start to enjoy life again.

GailAnderson profile image
GailAnderson in reply toHeadinjuryhypo1

Thank you. I will look into this.

Rhubarbtr profile image
Rhubarbtr

me! I’m in my fifties, in my professional prime, definitely district attorney stage not Driving MIss Daisy. Was - and am - very fit and active indeed pre diagnosis in 2023. I’m a runner like you - marathons and halves. Always eaten well, don’t smoke, don’t drink. I fractured my humerus training for a half and subsequently found I’d fractured T7 and 8 possibly at the same time. I was devastated to be told I have osteoporosis and still find it ‘unfair’ but yes, life is….

I’m back to running as before and I added weights 4 hours a week plus 2 hours Pilates . Drug treatment plus exercise has improved my bone density.

I still work full time and have been on several holidays. I’m very scared for my future and I hate the way some medics treat me like an old biddy but I’m doing my best and for now I’m living a very full life as before.

I would say you need to advocate for yourself to the NHS and educate yourself. If you can afford to go private as a safety net that’s a huge plus.

Also don’t pay too much attention to horror stories online about side effects and the like. Get sound statistics based info from good sources eg Royal Osteoporosis Society.

You sound sensible, motivated and positive so you have all the right attributes to take on this condition

.

Good luck

GailAnderson profile image
GailAnderson in reply toRhubarbtr

Thank you. Your comments are good to hear and I am pleased to hear that you are back running and doing a mix of weights and strength... it may not be the same as before, but with the diagnosis, it sounds fantastic to me. Have you looked at swimming too?

I am lucky enough to have private health care which is what got me my scans quickly, but as soon as the Spinal surgeon found that I had a fracture and Osteoporosis he advised that long term this was only supported on NHS... hence why I am back on the NHS route again. I have however kept my options open for the Rhuemotologist at the moment and I am still seeing a private one to see whether they are able to help me or not... I am just concerned about long term treatment and the handover if required back onto NHS. I'd love to hear more about your experience with this if you have some.

The medication comments on some of the forums is hugely scary. For now, until I found out what they recommend I am not even looking at the details, then as you say, my plan was to look on the ROS website/ talk to someone at the ROS to understand and establish what it woudl mean for me in terms of side effects etc.

I really appreciate you taking the time to respond...and it is scary, most probably due to the lack of information out there about 'younger' people getting Osteoporosis. I agree that everyone - even doctors - appear to think it is an 'old persons' disease' which doesn't help.

We need to work out how we can adjust to the new 'normal'... but that new 'normal' should be as exciting and interesting .... if not better, than the old one.... I am a great believer that things happen for a reason and that where one door closes, another will open.... maybe I was meant to be a champion chess player (unlikely as I have zero patience) and my body is telling me to look at a new avenue!

I hope that you manage to get on top of your own journey too, finding some exciting/interesting sports - 🙂perhaps a little more than marbles or chess - and also explore more of the world.

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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.