Don’t give up be persistent !!

[Sunseaandsand]

Hi everyone,

I have now had 15 fractures ( diagnosed) plus fractures in the ribs. These have all occurred without any kind of injury or fall.

Two of these fractures have re fractured twice and one has re fractured three times.

My first fracture went undiagnosed for three months ( my doctor passed it off as muscle pain) It was diagnosed at my appointment for my next routine Dexa Scan at the Bone Clinic.

My next 2 fractures occured one month apart and I chose to see a different doctor at the same surgery.

These were also passed off as muscle problems ( after having one fracture I knew I had got two new fractures) the appointment went from bad to worse with my demanding an x ray and refusing to leave until the I was given the form.

She also told me that I could not have any pain relief prescribed for muscle pain.

She then actually slammed the form on the desk in front of us.

I went to my local hospital for the X-ray and my words when I came out to my husband were ( that was a waste of time it is not going to show anything) I was completely right because I knew the x ray had not been taken correctly.

At that time I was being seen by a consultant at a larger teaching hospital and on contacting them they finally arranged for the x rays to be repeated which showed I had 2 new fractures in the Lumbar.

( this was after being repeatedly grilled by a secretary who told me I would not know if I had fractured !!!)

All during my journey with osteoporosis my local hospital were never able to recognise any of my fractures on the x rays.

In 2019 I had a major fracture in the Thoracic I was seen in A&E by a lovely Doctor who organised the x ray and on looking at it said the fracture was in T9.

He told us it then had to be confirmed by the Duty Radiologist whom he called whilst we were in the room.

The radiologist insisted I did not have a new fracture it was only wear and tear.

The lovely doctor put the phone down and his head in his hands saying he could clearly see the fracture but his hands were tied, the diagnosis of the radiologist is what they have to go by.

He told us he could not offer me any way of help not even pain relief.

He sent us away saying contact the Bone Clinic as soon as possible and after passing his email to us asked that we let him know the results as in his own words “this is happening too often”😡

It took many years of complaints, phone calls and emails both by husband and myself to get a result that was needed regarding this appalling situation.

The result we achieved was that any further x ray or scans were to be reported on by the Consultant Radiologist.

It was not easy to say the least, situations like this take our faith away when it comes to hospitals, consultants, and doctors.

These are the people we need to put our trust and faith in for both our families and ourselves to be able to receive correct diagnosis and treatment.

Don’t give up be persistent. xx

[JGBH]

This is simply unacceptable and indicative of a shoddy substandard service. One wonders why so many so called medical practitioners are frankly not up to doing the job they have been trained for. Naturally one then cannot put one’s trust into such people. Why are they so bad?

A few years ago, I insisted on an MRI scan stating an X-ray would unlikely show any fracture or micro fractures. Any X-rays I had previously didn’t show any sign of fractures (apparently)…´but the MRI showed very clearly the lumbar compression fractures… I had been in agony for a long time and could hardly walk. Where do these people train and how do they actually pass any exams, one wonders.

So well done for your perseverance BUT you should not have had all the stress, fight on top of the extreme pain. No one should. However I have soon realised one has to fight for everything. Not acceptable in the 21st century.

Do hope you’re feeling better.

[Fruitandnutcase]

What a dreadful tale.

Many years ago on holiday I slippped on rocks on a beach. I ended up in A&E. I felt so sick with the pain i couldn’t stand up.

I was xrayed and the young doctor was looking at the X-ray when the consultant came in, said ‘what are you peering at (boy was implied!) You shouldn’t peering then he turned to me and said ‘nothing is broken you can go home.’ I was absolutely shocked.

A year or so later I was in my doctor’s surgery, she popped out for a minute and I glanced at the screen with my notes and saw something about fracture and I thought she must have called up the wrong notes but when I looked at the date it seemed I had actually fractured my wrist and was sent on my way only a splint that I begged for, for support!Im sure the young guy knew it was fracture but who was going to argue with their consultant .

[1ChLoE]

That is appalling. Having a fractured vertebrae and other fractures is extremely painful as I know, but then not to be believed on numerous occasions. This must have been like living in a nightmare, and no one listening. There obviously needs to be changes to the way these things are dealt with, but I doubt anyone will.

Well done for continuing your fight to get answers, it shouldn’t be that way. I wish you all the best in the future. 💐

[Teriparatide2024]

well done for perseverance!!!! When I was about 25, a horse fell on my leg and crushed my foot (in Spain). X-rays taken. Dr said nothing was wrong. He told my mother to take me to a psychiatrist! End result was I had 5 broken bones!!!!!! The hospital where I was finally diagnosed, trying to get hold of the original x-rays, but that first doctor refused to release them!

I am interested to know, for my own comparison sake, your DEXA scan scores have been. I’ve just had my first injection of. denosumab, and had lots of horrible side effects. I’ve tried loads of other medications, all with side effects. So my thinking is that I will just do without..

[fraid]

So sorry for you, medics are dreadful,esp telling you you wouldn't know if you'd fractured! I don't need xray to tell me I've refractured thoracics,ribs affected too, the extreme agony can tell me that, and pain seems worse than original ones. Pain meds not enough atm so going to ask for Gabapentin, know strop doc will insist on xray, can't physically get there, would do more harm than good and they'd only give me same meds anyway. Dox can't know your pain, only you can. Hope you're doing better now. What meds are you on please?

[Sunseaandsand in reply to fraid]

Hello Fraid, I have just seen your most recent post and in answer to your question about the fractures braking down further the answer is an unhappy yes.

From last July that is what has been happening to me.

I knew I had fractured, but to begin with I was really confused because it felt like my whole back was moving when I was on my feet and my right leg kept giving way. Then in August it felt like my back dropped, my knees buckled and I felt excruciating pain. That’s when I knew I had fractured but something wasn’t the same.

I was absolutely right 2 of my thoracic had crushed further, in September my L3 crushed further and in December a third one in my thoracic crushed.

The one that crushed in December crushed even further in January ,in total it went 3 times all were diagnosed and compared with previous MRI scans.

T7 was the one that broke 3 times although I know in myself it actually went a 4th time but MRI and x rays are not worth the extra agony and distress of going through any more.

I have too many now and know myself when another takes place.

My GP agrees totally it serves no real purpose knowing and totally understands the extreme difficulties getting there and as you say the strong possibility of ending up with more fractures.

Getting the pain controlled is impossible, as a result of the treatments and the fractures I am severely underweight despite eating well ( and we who have had multiple fractures all know the problems that come with eating) the weight issue has an enormous effect on how much pain relief I can tolerate. I take Oramorph this helps my sleep, and relaxes my body to be helped on and off the bed. I top it up with paracetamol.

The downside for me is I have to stop and re start because I can’t increase it, and for it to keep working for me that is what needs to be done.

It does make me more sleepy in the daytime but this year I have dozed off to sleep at anytime and I know that is because of the immense trauma my body has been put through.

The spasms are my BIGGEST issue, this year with the fractures crushing further they were coming one after the other with episodes lasting up to 45 minutes.😫😩

I have tried diazepam and Baclofen, neither have given me any relief probably because I can only have tiny doses, they made me lightheaded and when taken close to the oramorph they knocked me out ( not in a good way) I do have a really good GP who is very understanding regarding my pain but he is limited to what he can prescribe.

He has tried relentlessly this year to get more support for me without any success, it is as frustrating for him as it is for me.

OSTEOPOROSIS is a disease under recognised. I have lived with this terrible disease for over twenty years and in that time nothing has changed other than the introduction of one new treatment.

If patients can tolerate pain relief it should be made available to them.

I so hope you are able to be prescribed the Gabapentin and it helps you through your pain. xx

[fraid in reply to Sunseaandsand]

Thank you. You have gone through so much for so long, is your pain finally under control atall? Yes the spasms are the worst, I am grunting here loudly atm, desperate,nothing seems to work for long and feels like pain moving about, now under right shoulder blade, agony.So fed up with pain! Just have to grunt and bear it hope get some respite soon.😱 For you too. 🤞🤗

Taking too much Tramadol but need this to stop.Agree no point having xray tell me what I know, just need stronger meds! 😬No appetite either coz of meds. Dreadful isn't it? 😢

[Sunseaandsand in reply to fraid]

Hi, for the acute pain whilst the fractures are healing you need stronger pain relief and if you can tolerate these ( there are a number of them you can try) there should be no reason for your doctor to deny you.

Oxycodone is a strong painkiller and for the acute pain works well, I had to be taken off it though because it was knocking me right out and that was a very low dose.

Contrary to belief it is safe to take under supervision and is usually given for a shorter period of time than other meds.

For the Chronic pain the Buprenorphine patches work very well and are used by many these can be prescribed easily by a GP I tried these and they did help but was having an allergic reaction to the patch itself, not the medication it releases. Because it was helping with the pain I tried to continue but was taken off them. I have had severe reactions to plasters and dressings it is the adhesive😡

Have you ever been to pain management? they are able to and do offer much more than your GP can.

The only time I get relief now is when I am asleep, I never thought or was told that these fractures can continue to crush, although recently the consultant did say it is something seen very rarely.

I would not have thought either that thing’s could get this bad because, now even the fractures have healed ( well they should’ve) there are so many thing’s I have had to learn to suppress because I will still go into spasm, amongst them is laughing how sad is that😒

Actually I have sneezing mastered and can now suppress any pretty well☺️my husband says he doesn’t know how I do it because he has tried everything and it doesn’t work for him. 🤣😂 this is me laughing and I can still smile 😊 x

[fraid in reply to Sunseaandsand]

Thanks. I have Fentanyl patches 12 mcg, had to wean myself down from 50mcg as lost 3 stones re nausea, no appetite etc. they keep the worst off normally topped up with Tramadol but this is different. Am on 6 Tram a day, just barely makes a difference. Can't go anywhere and been offered nothing except more xrays, refused as futile. Will phone doc tomorrow try for Gabapentin or sumat stronger than Tramadol. Hoping this is a temporary agony and will improve?? 🤔

Wish it was 'it only hurts when I laugh' or cough/ sneeze/ move etc. but we still have our ( rather muted) sense of humour. Do you get any relief once they've healed or is it a constant pain now? Have you tried muscle relaxants to prevent spasms? I had Robaxin, Baclofen with limited success, though may try again. Is your gp helpful? Mine aren't atall, one was but I keep getting different dox who just talk over me.😡

I do feel for you and can only hope you get more help and some pain relief soon.Will let you know if I find what helps most. 🤞Best wishes. 🤗

[love42france in reply to fraid]

I was put on Tramadol and had a very very rare reaction to the drug called SSRI Syndrome. It almost killed me and did some memory damage. I was in hospital for just under 6 weeks, 3 of those in Rehabilitation where they used a TEN's machine to control my pain. I have one at home and use it for referred pain in my hips. I had severe referred pain in my front ribs but that has gone at last. Perhaps Acasta is working as life is easier than it was.

[love42france in reply to Sunseaandsand]

I was put on OxyContin by my generalist because of the pain of a trapped nerve from a spinal fracture, It had no effect on me. The Rheumatologist said I should come off it and go on Acasta (I have digestive problems) and calcium and Vit D3. The pain is now ?controlled by paracetamol and using pacing to do housework etc. I am in less pain on Acasta than I was without any real drugs to treat my osteoporosis. I take things easy and do wear a lumbar support if I do any houseword etc.

[Sunseaandsand in reply to love42france]

Hi, I’m sorry to hear of the difficulties you had to endure because of your reaction to the pain medication. OxyContin is not usually given for nerve pain so I am not surprised it is not helping you!!

Usually they give Gabapentin or similar meds for nerve pain.

Good to hear that you now have your pain under some control and are able to do some things around the home etc with help of pacing. I am not in a position ( and haven’t been for a long time to do anything around the home and need help with my own personal care etc. x

[love42france in reply to Sunseaandsand]

Sorry to hear you cannot do much. I have complex health needs after nearly dying because of a Tramadol reaction and two bouts of PTSD when I was fit and able bodied. I am on Lyrica for other nerve pain and Zanax to keep my epilepsy (caused by Tramadol reaction) at bay. I have mild sleeping tablets etc etc etc. I take a large carrier bag when I get my monthly meds.

[Sunseaandsand in reply to love42france]

You really have had a rough time but thank goodness you have come through it.

What a cocktail of meds you have to take but you are doing well in that you can do the things you are doing.

Take care and let us know how you progress. x

[Mavary]

How dreadful for you. I know my first spinal fracture went unnoticed and when my foot was broken they didn’t believe I had a fracture. It was after five weeks when I went back I was told it was broken. I had walked on it all that time.

[wellness1]

I'm so sorry for all you've had to endure and I'm appalled at how difficult it has been for you and others to get appropriate imaging, diagnoses, and pain relief. Well done you and your husband persevering through it all.

[Mavary in reply to wellness1]

Well it’s probably my own fault for not pushing it. Even with the second fracture it surprised me when the physio said have I ever been for an X-ray. I had the X-ray and they said I had two fractures one an older one. It was a different story with the third one. My T12 went and I couldn’t even walk. I definitely knew I had that one. The last four I’d got myself ready to go out. I got as far as the gate and I had a job to breathe and my back ached so much. I phoned the Dr and she wanted to see me. I went up and she thought it was my lungs and sent me to hospital. I had a scan and they said it’s not your lungs it’s your back. You have four more fractures. Up to that point I was still walking down the town. I’ve never done it since. I go on my scooter now.

[Sunseaandsand in reply to Mavary]

Hi, you should not feel in anyway that it was any fault of your own for not pushing for the correct diagnosis and care.

The whole purpose of my post is to make the point of how many blunders and mistakes are being made around Osteoporosis.

Why is there still so much ignorance amongst the medical profession surrounding Osteoporosis??how can these fractures be passed off as wear and tear??

To add to this I saw an Orthopaedic surgeon earlier in the year and he said to myself and my husband. “I do not know much about Osteoporosis “ those were his exact words!!!

Please don’t feel bad for not pushing, I’ve been pushing for years now and still hearing totally unbelievable and soul destroying words like those x

[Mavary in reply to Sunseaandsand]

I know you are right.

[Sunseaandsand in reply to wellness1]

Thank you, yes it is appalling and to think that so many are being put in these situations of needing help and it not being available. x

[Mavary in reply to Sunseaandsand]

Unless you are able to fight for care you don’t get it.

[tangocharlie]

What a dreadful story, so sorry to hear. My tale is minor in comparison but I have suffered spinal fractures and kept being told it was 'just muscular' by a succession of doctor and physiotherapists. I am putting in a formal complaint and want to know their comments. Having suffred spinal fractures myself and experienced the excruciating pain I'm sure I could spot them a mile off if I saw anybody else in such pain, and that's without any medical training. The ROS nurses told me too many fractures go undetected. I doubt any 'lessons will be learned' but if at least highlight the issue and a few peope learn from it there is a small chance.

[Mavary in reply to tangocharlie]

After all the pain I’ve still got when trying to do anything I would definitely push someone to fight for recognition. The trouble is that we aren’t trained to know and that’s how we get overlooked and suffer for so long. But then nobody can see the pain we get. I’ve been in tears a couple of times when people I.e have told me to walk instead of using my scooter. Why would we just be lazy instead of walkig. I use my scooter because I’ve got to. So you see it’s not only the medical people it’s people in general. People that dont have to suffer the pain that we get.

[tangocharlie]

Sadly so true. Well meaning people tell me wrongly that I shouldn't be using my rollator/walker and I should just try and walk unaided but as the specialist spinal physiotherapist I see says, I don't really have a choice if I want to be mobile, it's that or sticks/crutches and at least the walker has a carry bag as I can't lift bags. If someone tries to give me unwanted advice I just say 'and when did you qualify as a spine specialist?' I don't know why but people just think people on scooters are lazy. I would love to not have to use a walker but for the moment at least and maybe forever I will have to. I am not going to let my complaint drop though even though I recognise it may take years. There can be no doubt that failure to correctly diagnose is negligence, that is their job!

[Mavary in reply to tangocharlie]

I think in their defence they can’t see inside our bodies and let’s face it. There is a lot of people that do put things on and we have to suffer because of it.

[Mavary]

My friend made me smile. She said she would come and beat them up. 🤣.

I just wish I lived near her. I would give her their addresses. 😹🤣.

Just joking of course.

[jozef123]

I agree, I have had 16 spine and 2 broken hips over 16 years. Always the cray would shoe nothing but I fortunately have had a marvellous surgeon who has done mri s and vertebraplasties on spine , pelvis and 2 hip replacements. None of these fractures happened with a fall. I ve always had to persist too and have been very lucky to have the surgeon. Unfortunately I tripped on a paving stone the other day and damaged hips back and face The pain has been awful but I know there are no breaks as everything is filled. Anyway yes persistence is the key