Is this normal?: Hi all, So I posted a... - Bone Health and O...

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Is this normal?

Js706 profile image
35 Replies

Hi all,

So I posted a while back after I got diagnosed with osteoporosis and had a vertebral fracture. Turns out I actually had 4 vertebral fractures, not 1 like they initially thought!

I’m about 8 weeks out from the fractures (and so 8 weeks in to taking alendronic acid) so they should be just about healed up or nearly healed (unsure how much my daily steroid dose will affect healing). But while I’m miles more mobile etc than I was I’m still struggling with pain and stiffness a lot of the time.

I also just started work as a junior doctor on busy surgical wards which probably isn’t helping to be fair (standard day shifts are 9-10 hours without much chance for a break normally). I’m using a single crutch or walking stick at work to help keep me upright but I really can’t walk very far without a lot of pain still without any support - I struggle to hold myself upright and not bend forwards a bit. I also can’t really stand upright in one position for very long without needing to move or sit down, like if I’m trying to do meal prep for the week I find I need to sit down to chop everything. I’m using ice and heat packs after busy days and doing some basic physio exercises to try and build up strength again but just seem to have hit a plateau in progress now.

Is this normal for this stage after fractures? Or just for osteoporosis generally? I know a bit about it from my training but still haven’t really had any information about what to expect living with it or been talked through the diagnosis by any of my doctors because my DEXA report came back the same day I went to a&e and found the fractures - I think everyone sort of seems to think someone else has done it! I’ve got an appointment at the metabolic bone clinic coming up but that isn’t until November so I’m just trying to muddle along until then.

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35 Replies
Gjohnso profile image
Gjohnso

Hi. I’m so sorry you’re in pain. I had 5 consecutive fractures over a few months - almost two years ago. I am usually always in pain, although I feel much better than after it happened. I could barely stand then. I have lost about 3.5 inches in height. I also try to stand erect. Physical therapy helped tremendously. I have several stretches I do a few times a day, and it lessens the pain considerably. Mornings are a lot better than late afternoons. I bought a small foldable exercise mat from Amazon and can lie on top of that anywhere to stretch.

philippa1412 profile image
philippa1412

Hi. So sorry to hear your problems. I have something similar. I had a fracture last August and was nearly pain free after physio and chiropractor only to get another compression in May. This is taking longer and like you when I walk to much it aches and feels week. I do basic stretches etc, hot and cold. I have also done acupuncture and that has helped although I seem to have to go back each month, but maybe worth a try. I also get my husband to v lightly massage peppermint oil (mixed up with grapeseed oil) which can relieve. Someone had also suggested to me using bio freeze gel which again does help a little. I wish you all the best.

Js706 profile image
Js706 in reply to philippa1412

Sorry you’re having similar issues but it is a bit of a relief that I’m not alone! I go through a fair bit of bio freeze 😂

I might give acupuncture a try if I’m still having issues when I get to the bone clinic - and will also see what they advise too

philippa1412 profile image
philippa1412

Are you from the uk? I don’t even get offered a bone clinic. Just medication. So frustrating. I shall be interested to her why they say to you. I know what you men about kindred spirits.

Js706 profile image
Js706 in reply to philippa1412

I’ve only been sent to the bone clinic because I’m 26 and a DEXA 3 years ago was completely normal. I take daily steroids but apparently the rate that my spine has degenerated at is abnormal even for my steroid dose. But I’ll update once I’ve been!

philippa1412 profile image
philippa1412

I’m so sorry you have this so young. And being a junior doctor must be hard. Hopefully you will get good treatment. All fingers crossed for you. I’m 64 but was diagnosed in my mid 50s and is going down quickly too all of a sudden. They think there might be a link with my thyroxine but won’t investigate.

Js706 profile image
Js706 in reply to philippa1412

I’m hoping that I should be able to gain a bit of bone density back if I work hard for the next few years, which I guess is the one advantage of being young! Plus I suppose I complain about the steroids as the cause of it, but they are the reason I’m still around so my “squishy spine” as I now call it is definitely the better option.

At the moment it’s just tiring more than anything! But my general health means I’m working less than full time so it’s more manageable thankfully.

That’s really frustrating that they won’t look into it more for you! And sorry that things are worsening as well, I hope you can get some answers or some relief from symptoms at least.

Gjohnso profile image
Gjohnso in reply to Js706

I am so glad you caught this while you are young. I didn’t realize you are 26. I started taking prednisone when I was 23 and have been off and on it for many years. I was diagnosed with osteopenia in my 50s and severe osteoporosis in my 60s. I wish I had developed a regimen for lifting weights that lasted from my 20s to now. I always did cardio but would lift for a while and then stop. I have two daughters about your age. I encourage them to lift weights, and I do the same. My bones are too fragile to do any jumping exercises that can build bone. You may be able to do this. I wish you the best of luck!

Js706 profile image
Js706 in reply to Gjohnso

I’ve been on permanent pred since I was 23 too, but was on and off it fairly often for a couple of years before that too.

I need to do a lot more investigating into the sorts of exercises to do to help - I’ve got a couple of weights around somewhere so will dig those out in a couple of weeks when I start doing some proper rehab

Gjohnso profile image
Gjohnso in reply to Js706

My dr arranged physical therapy for me. If that’s not possible for you, the Internet is a great place to find weight-bearing exercises for people with osteoporosis. Good luck.

Cappuccinobaby profile image
Cappuccinobaby

Seeing as you work as a junior doctor has the cause of your osteoporosis been found. I was diagnosed with osteoporosis after being found to have hyperglycemia both a direct cause of hyperparathyroidism. Both will be reversed somewhat following a parathyroidectomy. Have you been checked for hyperparathyroidism it is a major cause for osteoporosis, kidney stones or both........

Js706 profile image
Js706 in reply to Cappuccinobaby

It’s likely steroids as I’ve been on a minimum of 20mg prednisolone for a bit over 3 years. Blood sugars etc are definitely fine because that’s been checked recently.

They haven’t checked for hyperparathyroidism but I assume that will probably all be part of the initial work up when I get to the bone clinic, if not I’ll probably ask if they can check the levels at some stage (I get enough blood tests so they may as well add an extra on!). I hope that your symptoms improve once you’ve had treatment!

Cappuccinobaby profile image
Cappuccinobaby in reply to Js706

A simple bone profile blood test will highlight elevated calcium. If its in the high end of normal range get them to check your parathyroid hormone. I had to fight tooth and nail to get a diagnosis. Yes it could be steroid but one more blood test.......x

Js706 profile image
Js706 in reply to Cappuccinobaby

I’m fairly sure I’ve had bone profiles done on various admissions (I think it tends to be in the admission batch of tests that get done!) but will double check with my GP when I ring them next week for some more painkillers x

fraid profile image
fraid

Hi Js,Being a doctor there must be someone you can talk to about this,amazed you can work atall.I had 6+spinal #s,told pain was from kidney stone,denied xrays for 2 months re stubborn doctor,suffered throughout & had appalling care.Left to my own devices apart from physio,waited 3 months,who was little help.I have Kyphosis,am about 5” shorter,in pain all the time,stiff as a board & have to live on sofa as can’t lie down.I refused Prolia re all side effects,I have M.E too,just take Adcal.I seem to now have arthritis which brings its own pain,after fighting for enough pain relief I am on Fentanyl patches 12 mcg,down from 50,take a Tramadol as top up when I have to.Hot bots help but scarred my back,so got a heated vest which is brill!Too hot for summer as cover back,shoulders etc.Ice pax on painful arms,wrist etc.In other words I just treat the symptoms & have no med help atall.Couldn’t do Dexa scan as can’t lie down,inaccurate anyway.

I can’t stand or walk for more than a few mins,need help to shower etc.I need putting down!But you’re young & healthy & in the right place to get help,so ask for it!Good luck with finding the best ways to cope,hope you improve soon,best wishes.X

Js706 profile image
Js706 in reply to fraid

Work is definitely challenging at the moment, but thankfully my colleagues have been really understanding about the bits of the job I can’t do - like at the moment I struggle to lean over people to take blood etc, so I take on more of the other jobs like ordering scans and doing referrals to other specialists. So muddling my way through it! And I’m working less than full time which makes it more manageable too.

I’m so sorry that you had such issues getting fractures diagnosed and treated! Luckily my fractures didn’t take too long to be picked up but I did spend 2 years asking if I needed investigations or bone protection because I was on long term steroids and had fractured ribs from bending over awkwardly but was told “not to worry” so I understand some of the frustrations you had!

Thanks for the heated vest idea though - that’s definitely something I’ll look into for winter! I often get muscle strains and spasms from coughing with my asthma anyway so that sounds really handy to me for lots of things

Gjohnso profile image
Gjohnso in reply to Js706

Can you get a walker with a built-in seat or some kind of stool on wheels? I have several low stools placed strategically inside of our house. I sit on one to clean the toilet or to look in our bottom kitchen cabinets. Would you be able to take blood while sitting down?

Js706 profile image
Js706 in reply to Gjohnso

I can if I can locate a spare chair! Which is what I’m starting to do now. Slowly building up to doing more practical stuff

bluebell99 profile image
bluebell99

I had many spontaneous fractures throughout last year, the worst ones being mostly thoracic in September/October. I am still in pain, some days worse than others

I was due to have a total hip relacement but was told last week that my back would be affected due to the thin bones and they would not be able to move me or for me to lay properly on the operating table without added fractures. Also I would have difficulty with the post operative physio.

Naturally I am feeling pretty low and wonder when this will all end.

I was on steroids for fifteen years due to lupus, have had both knees and one hip replaced and looking back I can barely remember a time when I didn't have pain or walk with crutches, sticks and being in a wheelchair.

I think the vertabral collapse has been the most painful and debilitating though and totally affected my life in not even being able to cook as I can't lift saucepans or get dishes or use the oven.

Unfortunately my poor husband of 48 years has been and will continue to be my sole carer and I feel sorry for him is going through this with me and taking over all the normal household tasks as well as my personal care.

I am sorry that my news may be of no comfort to you, particularly concerning pain but we are different as I am an oldie!

Hopefully you will regain your strength and stamina as you are young, but it may still take some time.

Pacing yourself and making sure you have adequate rest will help, don't try to break through the pain barrier. If you hit a brick wall with pain and/or fatigue, stop, even if it is only for 10 minutes. If your work colleagues are giving you a hard time, don't be embarrassed to tell them how you are feeling and why.

One physio told me that doing exercise that will make your muscles ache but bearable is fine. Exercise which causes you pain is not alright and should be stopped, working through the pain barrier to get better is a myth and could possibly cause more damage.

I wish you all the luck to get your back strong and regain more movement and less pain. Keep your chin up!

X

Js706 profile image
Js706 in reply to bluebell99

I’m so sorry to hear that, although part of me is slightly relieved that I’m not totally abnormal in struggling!

I’ve had issues with dodgy asthma and rib fractures fairly constantly for the last 5 years or so, but like you have found this the most debilitating thing so far.

Thankfully my colleagues are being lovely about it, there are definitely some jobs I really struggle with at the moment but they’re happy covering my share of those and I just try to do extra of the more phone/computer based jobs. Not sure how long it will last… but at least we’re managing for now!

I definitely need to get better at insisting on short breaks, especially to go and take painkillers, but my current rotation is ridiculously busy so it can be hard to realise I’m past my painkiller time until everything starts to seize up again. Thankfully it’s only until the end of November and my next area should be much more chilled out.

Thank you so much for your help and advice x

Fran57 profile image
Fran57

Hello.As an aside, I should like to thank you for all the work you are doing 🤗

I would echo what others have already suggested and say that you should really ask for your parathyroid hormone levels to be checked.

My GP knew nothing of the connection, but I did loads of research and found l indeed had hyperparathyroidism… a very small operation ( my one and only operation so far in life) sorted it easily.

Good luck and thanks again.

Stay safe,

Fran 😷

Js706 profile image
Js706 in reply to Fran57

Thank you - I’ll definitely bring it up if it isn’t mentioned when I get to clinic!

MaggieSylvie profile image
MaggieSylvie

You are describing how I am but there are two differences; I am 76 and I don't have osteoporosis.

I have four spinal compression fractures and am taking Aendronic Acid now for a few months. It has helped (I can now get out of bed) but I couldn't do a job where I'm bending down to listen to the chests of patients (my cousin and her husband were surgeons and they both had disintegrating spines). My partner cannot understand how I can leave a chore half way through, calling me lazy, but I can't go anywhere I can't sit down and I have lost 3" in height. I do have a home help 1 1/2 hours a week but I live with a man who makes messes so, while home help is very helpful, I still have to do cleaning on other days and can't stand for very long, which is why some chores don't get finished straight away.

We can be on AA for up to five years but I don't know whether I'll ever be back to "normal"; I also have scoliosis and the first compression fracture which is angulated is too old to be corrected. I have treatment with a chiropractor once a month now which relieves some of the stiffness and afterwards I can walk back to the car upright. I sometimes feel that using a stick encourages me to lean forward. I don't know what a metabolic bone clinic is or whether it would help me. I don't know what would help me that doesn't cost money to be honest. I am just about to raise the height of the perching stool to make it easier to prepare food while sitting. We just have to do what we can, and at least you are working in the best place to get help/information and hopefully your youth will be on your side with exercise and strength. Good luck.

Js706 profile image
Js706 in reply to MaggieSylvie

I’m so sorry to hear about how much you’re struggling with things. Work is difficult but managing to muddle through at the moment - working less than full time definitely helps. I’m definitely glad I live alone though because chores very much get pushed to the bottom of the priority list!

I’m not actually too sure about what the bone clinic will offer! But I think some of it is also due to the issue you’ve mentioned where we can only have bisphosphonates for five years or so before needing a “treatment holiday” (if only that came with an actual holiday!). As currently there’s no plan to reduce my steroids any further until there are new asthma treatments available which will probably be a few years. I’ll have to ask them for suggestions about how to best manage things and report back on here! But like you say, it’s working out how to adapt things and getting on as best we can - I don’t have a perching stool (although may invest in one) but do do my food prep sat at the table as I can’t stand long enough without pain

MaggieSylvie profile image
MaggieSylvie in reply to Js706

Ah - you have a table. No room in my kitchen, and the work tops are fairly high. Another thing I find useful is a seat that goes across the bath for showering. I got the impression that we couldn't have bisphosphonates for longer than five years, but that may just be for people my age and the fact that I don't have osteoporosis. At least I don't have the other things you suffer from with breathing, though I get out of breath when I push myself too hard (I also have blood cancer which might have something to do with it.) I may be living alone too, soon. In some ways I'm looking forward to it but at the moment it is very stressful. It seems we all have trouble standing - walking isn't so bad, and we can't sit for too long either, though I do because I'm always on the computer. Ebay is causing me a lot of stress at the moment. I hope the bone clinic helps you.

Viazoy profile image
Viazoy

I'm so sorry to hear this. My Prolia-mismanagement related fractures occurred a few years ago and I'm still in a good deal of pain if I am upright: standing , sitting without support or walking too long. Luckily I'm old and retired. I don't know how I would handle a job requiring a lot of walking or standing or even sitting without proper support! Physical therapy helped a little and I too do my stretches. And I walk about half a mile each day. But the pain is a factor in everything I do. It was too distracting to drive so I gave up my car.

Js706 profile image
Js706 in reply to Viazoy

Really sorry to hear about your struggles too!

I will definitely be getting a physio referral sorted when I get to the specialists- I had self referred for my back pain before my fractures were found and they said I’d need to get my consultant to refer me once the fractures were healed due to me being “complicated” (awkward!). But I’ve at least got some basic stretches I’m doing now, although I must admit I haven’t been quite as good at keeping up with them since starting work - need to get back on that!

Posy-White profile image
Posy-White

Hello Js706

Sorry to read your news.

Can I suggest you try a fairly thick and wide neoprene wrap / belt - they fasten with velcro so you can adjust the support. (Neoprene is the fabric used to make wetsuits / support gloves etc.). If you find this helps with the long days you are needing to do, you might also consider a sports belt, sort of thing used by weightlifters (Amazon etc. have various ones).

I know there is a difference of opions about wearing any form of brace or corset but for some of us, such things are very helpful.

I have had one lot of 8 spinal fractures over 3 years ago, (also Prolia-mismanagement related fractures)- I wear a spinal brace (from orthotist via physio team) and am able to stand with better posture etc. walk further etc. - I don't need the support first thing and do an 45mins of physio each day without it.

If a balance is made and the support is helpful it would suggest you consider it.

Other ideas if the pain is bad when tired etc at work perhaps aTens machine to ‘dissipate the pain’

I'm sure you have 'good supportive shoes' but I found adding Sorbothane shock absorbing inner soles really helped me and again have continued using these.

And the ROS website for info' on 'everything' and helpline for individual support.

Good luck

Best Wishes

Posy White

Have you tried the specialist nurses a ring on the free helpline at the Royal Osteoporosis Society? Their number is 0808 800 0035

Js706 profile image
Js706 in reply to

I did when I first had my fractures as I had no info on what to do, but might give them another ring!

AzKK2019 profile image
AzKK2019

After reading your thread, I remember going through so many similar issues. I had seven vertebral compound fractures and spent two months mostly in bed and most of eight months in a wheelchair. It's been 2 1/2 yrs and although I still struggle with pain I take an occasional Tylenol (allergic to nsaids) and quit opioids. I take breaks when my body tells me to. I'm on my last month of Prolia injections, so fingers crossed it will show positive results on my dexa scan. Like so many others, keep moving, rest when your body tells you to and keep positive (that's the hard part).

Kind Regards, KK age 65

annelii profile image
annelii

Dear JS, so sorry for your travails and also want to thank you for your supreme kindness towards your respondents while going through such a difficult and worrying time yourself. I only have two or three minor compressions, all now quite old, and, while I must have a milder form of OP, have found core and back strengthening exercises very helpful (plank and locust in yoga especially). I sometime imagine my possibly crumbly spine might be held up by my muscles. Once your fractures are healed you might look into yoga for osteoporosis. Also have you come across hip hinging - you bend from your hips not at your waist and keep your back straight. Good luck with the healing process and for the future.

Js706 profile image
Js706 in reply to annelii

Thanks for your suggestions - I’ve tried little bits of yoga or Pilates in the past so will definitely have another look into it going forwards!

Gillymar profile image
Gillymar

I am sorry to tell you I think this is normal for osteoporosis. I have had it for 10 plus years and had 2 femurs pinned 4 years ago, due to alendronic acid over 7 years. I am 87 and reduced to a rolator in the house and a wheelchair for outings. Also identify with you re pain and and painful standing. Sorry.

Js706 profile image
Js706 in reply to Gillymar

Sorry that you struggle so much with pain and mobility still! I guess it’s not ideal if it will continue to be an issue but I’d rather know it’s a possibility now and then I can start adjusting things bit by bit rather than being told everything will be fine and getting a shock down the line

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