Hi everyone, hope you are all doing better than I am at the moment.
A few weeks ago my back pain was increasing and it was becoming difficult to stand and walk even the few paces that I can usually manage in the home. I suspected as in the past this was a warning that another fracture was going to occur.
Then three weeks ago I knew that I had another fracture.
Already having had two lumbar and two thoracic fractures I am well aware of the pain they cause.
I spoke to my GP who said he would send a letter to the Specialist who I am under for the managment of my Osteoporosis and told me I must call them straight away.
I was due for a follow up appointment to see the specialist at the hospital and due to Covid-19 this had previously been rearranged to be done as a telephone appointment.
I called the hospital and spoke to the specialists secretary and explained my situation and the amount of pain I was in, They called me back to say speak to my GP to get some pain relief and I would have to wait till my telephone appointment the following week to speak to the bone specialist.
The advice from ROS nurse was to try sleeping on a garden chair, speak to my doctor to get pain medication, and because I know what fractures are like having had them before, then I will know the pain will eventually go away.
Spoken I presume by one who has never fractured before.
And why are they still pushing Prolia as a treatment when they know of the many people on here whom lives it has ruined???
The pain and spasms have been horrendous the spasms coming around my back and into both of my hips.
It has taken my husband over an hour to help get me off or move me on the bed because the pain has been too much. There has been many tears screams and sweat for the both of us. I have spent nights sat in chairs and also had failed attempts on garden chairs stacked with pillows and cushions.
Sleep and movement of any kind has been impossible. When attempting to have a night on the bed my husband has had to try to move me along by using my nightie to pull me along.
12 days later I had the call from the specialist at the hospital specialist he suspects the fracture may be in the Sacrum, but with Covid-19 scans and x rays can not be done until August.For the muscle spasms he said that Diazapam is very effective and would get a letter sent that same day to my GP to pescribe it.
I called the surgery 2 days later and of course no letter had been received. Strangely enough though the day after my call with the specialist an appointment arrived the very next day for my scan and to discuss my treatment in August!!!
The letter forom the hospital arrived yesterday over a week after our conversation on the phone.
What is the difficulty in posting a letter, sending a fax or making a phone call???
If it was not for the fact that I now have an excellent GP who, after phoning me, immediately got a prescription done, I would be still sat up in a chair all night afraid to get on the bed.
We all know the apprehension of these, strong drugs as we hear so many negatives, with my last fracture I was given opioids for the pain. These were excellent for blocking out pain and I was weaned of them very slowly because of withdrawal effects.
The Diazepam after 4 days has reduced the spasms to an extent that if I continue extremely slow and with careful movement, and with help of my husband and, now with the aid of slippery sheets recommended by an occupational therapist, (whom has been absolutely brilliant), I am now able to move in and out of bed.
The Diazepam is not a pain killer it is amongst other things a muscle relaxant, and why it has never been given to me before when I have had fractures is beyond me. I am only taking it before I go to bed, not the 3 times a day as recommended to avoid dependency (again something the bone consultant mentioned was that it can be taken as and when needed ).
NOT SO these are strong drugs and not to be taken like one would take paracetomol.
The Diazapam is working well at controlling the spasms and for the last 2 nights I have been able to have much needed sleep.
Managing fractures in my experience is extremely difficult made even more so by lack of help.
Many feel as we do that if we are under the care of the bone specialists then the care should go beyond scans and treatments. In my experience, they have taken weeks to review x-rays, as mentioned, slow to get letters out and if you decide not to have their medication, leave you totally on your own. I’ve also found that the nurses at the bone clinic less than helpful, you struggle to get hold of them and the advice is poor (the ROS nurses are much more readily accessible and do seem more knowledgeable).
I have felt with all of my fractures very let down, we are given the treatments being it injection or tablet form and then sent away till next injection or scan is due.
Where is the help when these fractures appear???
How can hospitals help when after an x-ray they send you home telling you there are no new fractures.
Why can’t my local hospital detect these fractures but the hospital I attend for scans and treatments can???
My GP is not aspecialist in Osteoporosis and cannot be blamed for the lack of help they are able to provide, he seems to think that the specialists look after you!!. He faxed the bone clinic after my first call with him and told me to call them too. The bone consultant waited a further week until my scheduled call to get in touch.
I know as everyone else does that Covid-19 is causing many difficulties for everyone in the hospitals.
The point I am making is something that has occured with every fracture I have had and none of the helpfulness can be blamed on Covid-19.
I have never been scanned or spent one night or day in hospital when my fractures have occured.
I tried hard last year to have a plan put in place with the hospital for when another fracture occurs and was told it's not possible.
In fact if not for Covid-19 I would not have even had the chance to speak to the specialist at all.
I feel so strongly that Osteoporosis is going so unrecognized, in every aspect of the disease we are forgotten and left to fend for ourselves.
I would love to hear of others experiences be they good or bad.
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Sunseaandsand
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Up until now, thankfully, I haven't had any fractures. Last summer I was diagnosed with osteoporosis in my spine, I got a consultant appt on February this year, only after I asked for one, I'm refusing the AA due to the side effects, and he said he doesn't know what to do for me, so I'm sorting myself out the best I can
What a great tip about the slippery sheets. I would never have thought of that. I will try to get some in preparation for the next fracture. Thanks for sharing this.
If you go on the NRS website you will find them there.
Have looked at your previous posts.
I was advised by physio and Orthapedic surgeon to only wear a brace till the fracture heals.
To continue wearing it after will weaken the back muscles which will then contribute to more fractures.
It is very difficult living with the pain from the fractures, and having to adjust to the changes it brings into our lifes.
I hope that you will be free of any more fractures for a long time to come.
Sorry to hear you are in so much agony. I know how you feel. I agree with you, where is the help. I live alone and have a score of -5.9 told not to bend my neck, or back. Petrified every day that I will break my back or hip. I have been given 24/7 painkilling patches as well as oral painkillers Amitriptyline and Zapain. My problem is if I move my head slightly in any direction I go dizzy I think it might be nerve damage from my last spine fracture. I have spent most of the last two months lying in bed, most days not being able to dress or wash. With no visitors allowed how are we supposed to cope. Who can we ask for help, you are right noone can possibly know the pain of a spinal fracture unless they have experienced it. When I rang NHS emergency in desperation one evening and told them how I was feeling I was told go outside and get some fresh air. If you are old you are left to suffer alone noone cares. They just think you are having a moan.
Hi, it must be so difficult being on your own, I know I would never manage without the help of my husband.
To be told to go out for fresh air is a typical example of people not even listening to what we are telling them.
Pain is so difficult to live with, any slight movment is enough to bring it on.
With my new fracture I am in pain even whilst sitting.
Have you tried a brace, I was told by physio and orthapedic doctor to only wear while fracture is healing. If you wear it all the time it weakens the back muscles because it is doingthe work the muscles should be doing themselves.
I do think worn for very short periods it may be beneficial for you.
Some people wear them all the time but this is not the right way to go.
With the help of the Diazapam and slippy sheets I remain determined to get out of the bed,
With each fracture that comes along the pain increases.
I am a fighter and even though I am now in a wheelchair and dependent on others I still have my mind.
I will continue to fight this terrible disease and voice my opinions at my appointments.
Much more can and should be done for people like ourselves.
Take care I hope help comes soon for you , stay strong and please try to keep moving what you are able.
I sympathize but please do remember many on here age isn't the problem. The lack of care and support is why so many of us on here use the site. It doesn't take the pain or nightmare of a bad day away but I've often been humbled reading others stories. That alone can give us strength as well as sharing our daily difficulties.
No offence meant. I'm 52 with severe osteoporosis, lumber spine in -5.7, hip -3.9 and have shared the horror of multiple spinal fractures, slipped disc and nerve damage in one go whilst also living with two violent autoimmune diseases and osteoarthritis. My partner is 20 years my senior and has had cancer treatment for five years and now lives with metastatic melanoma and type 1 diabetes. There are others on here much younger than me. Both of us are ex-service people, Army & Police. So much for being fit once!
It's the loneliness. We have each other here but I feel for those alone. Neither of us have any family except for my son who lives many miles away. Sorry to hear you had a rather heartless comment on the helpline. The lack of support is due because 'older problems' are always swept under the carpet. In a country with a high volume of rheumatoid arthritis it's actually a disgrace.
I know the pain of those fractures and wish you well. I was terrified I'd lose the ability to even wash myself again so I do understand.
Hi, I have had pain in my neck and down my arm and dizziness when turning my head. It was diagnosed a few years ago by seeing a specialist physiotherapist and then an MRI as being boney osteophytes. They are bone outgrowths which can partially trap the nerve. Apparently they can occur because of normal ageing and wear. It is important to have an MRI to assess whether you need surgery as it if the gap is too small it can cause permanent nerve damage. Fortunately I didn't need surgery and manage by being careful not to turn my head in a certain way and with pain medication as needed.
I have just gone through more or less the same. I have had 3 x fractures in the spine, 2 x lumbar and one higher up. At the beginning of December last year an NHS physio got me to do a simple exercise which started up 3 x months of bad back pain, where, I felt like I was shot in the back when I tried to walk. I had a few weeks out of pain and then started to walk a bit more, as we are on the lockdown, it bought the whole thing back so that when I got out of bed and landed on my feet, my body buckled as the muscle spasms went through my back,
I had 4 or 5 one after another and made it to the chair in the bedroom. I called the doctor
and was given diazepan and paracetamol and codeine.
I have never been given diazepan before for my back pain either, and it seemed to work on the muscle spasms and I used my own brufen and paracetamol for the back pain. This was 3 x weeks ao and I haven't dared get back in the bed since, I have slept in a recliner chair downstairs (badly) 3 x hours a night for 3 x weeks.
I managed to get some more diazepan but then they wouldn't give me any more saying it was addictive, like you, after a couple of days, I took it only at night. I came off it 3 x days ago and have had horrible migraine heads and complete insomnia since. I am assuming this is a withdrawal! I got another appointment with the dr. and tried to get another muscle relaxant as it makes us more confident to move, she wouldn't give me any saying they weren't licenced for osteoporosis so has given me amitryptiline (I am not sure what that will do).
Like you, I feel that we aren't helped much to live with all of this. Scared to move, no proper pain relief or a muscle relaxant to stop the spasms.
I was due to start for the second time on Forteo before the lockdown and have it in the fridge, but in the state I have been in, too frightened to take it for fear of muscle spasms.
I doubt if my consultant will be available but will try to get in contact with him soon.
I was convinced I had fractured again in December but an x ray showed no difference from a year before (not that x rays always show up fractures), but, because I have had several episodes like this, and they usually last around 4 to 5 weeks, I think I couldn't have fractured that many times.
We don't seem to get many answers or much help with the symptoms.
On top of this, at the same time, my gallstones started to play up badly to the point that I thought I would have to go into hospital to have the gallbladder out (even with the corona virus) and at that point I was in so much pain I didn't care, of course, when the back went out I couldn't even walk let alone get into hospital, I was in a very bad way, so I can understand your desperation and vulnerability.
I cut food right down for 3 x weeks and got the gallstone pain down to a level I can manage
and the back is slowly getting better, although I am still frightened to move without my stick.
I hope your back pain gets better soon. I have been taking the painkillers every 4 x hours around the clock and am just starting to cut some out, its taken about 5 or 6 x weeks.
Sorry to hear of the problems you have been having.
In 2017 when I had 2 lumbar fractures physio gave me a few core muscle excersises to do.
I found even these aggravated the problems so I quickly abandoned them.
We know our bodies and no one else can feel our pain.
I also went for Hydrotherapy which on one occasion resulted in them taking me to A and E.
What works fo one does not always work for another.
Do you know of any other problems in your back that could be causing the episode you keep having??
I do hope you have not had 4 or 5 more fractures, is it possible when safe to do so you could see an orthapedic surgeon and get an MRI done to find out what else is going on in your back.
What dose of Diazapam were you given? Iwas given 2mg 3 times a day. Last year I was on Oxycodone pescribed by a pain consultant my weight is only 6 stone so I am limited to how high a dose I can go.
I decided to take the Diazapam in the evening at night thats when the spasms would hit me when laid down then attempting to move.
It does make me have a heavy head in a morning and feel more sleepy during the day.
It has worked a miracle on my spasms though.
I came off it completely in December and was weaned off it slowly.I did have withdrawal symtoms but nothing major.
It is sad that these drugs have had such bad press by people who abuse them.
It makes people like ourselves who really need them afraid to take them and also doctors reluctant to issue them.
I hope the amytryptiline works well for you please let me know how you get on with it.
Don't go on being afraid to get into bed, I know how hard it is but in the end I just could not sit up at night any longer, our bodies need to rest and heal.
I think my new fracture is another in the Lumbar, I do not know a lot about the Sacrum so can not rule out the bone specialists opinion.
I had a course for 2 years of Forsteo, it is the best treatment out there for the bones, if you have it there then at least you can restart it when you feel ready.
It is terrible when having one problem to deal with another is thrown at you and I do hope your gall bladder settles down quickly.
What are your symtoms ??
I have had problems for years and before lockdown saw a gastroengiologist privately.
He called me last week with results from the investigations.One of the things we talked about was Bile reflux which had showed up.
He wants an ultrasound reapeating (I had one at my gps request last July).
He explained that the bile is travelling back up the pipe and emptying into the stomach.
Well I really hope your back continues to improve , be extra careful and hpefully you will get some longed for sleep.
I am so sorry that you are having to go through all of this. Along with the slippy sheets, I also wear a satin nightdress which makes getting in and out of bed much easier.
I was so sorry to read you're having more fracture problems Sunseaandsand.
You probably already have an electric heat pad for our back; this was the only thing that helped me with fracture spasms, as I couldn't take Diazapam. I also had a set of satin sheets on top of a double folded duvet and five pillows so that I was in a half lying / sitting position, plus a pillow under my knees. (The worst bit was the incontinence pads, but better than moving).
Re: corsets / braces etc. this seems to depend on which physio/ spinal consultant you see – I wear a spinal corset for 10 – 12 hours a day. I couldn’t wear one until I had breath control (which I didn’t have until the fractures started to heal) I do some morning exercises every day before putting the corset on. When I wear the corset I am able to stand straighter and can manage a few steps around the house without crutches just using the furniture.
Re: hospital appointments with the covid situation. It does seem these vary from hospital to hospital, l saw the consultant in mid March, had blood test in April am going for more next week and have an appointment at the end of June. Un yet other people like you are left waiting! I am just so sorry your having such a rough time again.
Thank you for your reply, you seem to have exceptionally good support from your hospital.
I am so pleased for you (and if I am completely honest a little envious)
Yes these fractures are a real problem.
I spent all of last year recovering from the fracture I had in January, was on opioids for the pain and had counselling up until the lockdown.
The counselling helped me to accept the huge changes that the fractures had made to my life.
I was at the stage where although my body is not strong anymore and I am reliant on others. My mind and ways of thinking had recovered and I was feeling strong and positive.
Feeling a bit pushed back now with this fracture.
Speaking with the specialist he thinks it may be the sacrum but I tend to think its another in the lumbar.
My pain is coming from lower back around the hips, the problem I have (but Diazapam now helping ) is once we have got me on the bed in the usual way head down and legs brought up as head going down.
That's it I have been unable to move up or turn or anything.
Even now with the Diazapam I can not have my pillow raised very much as this sets it off in the middle of my lower back.
In short once I am on the bed that is where I am having to stay.
Last week I had a rise and recline chair delivered it is marvellous. It means I don't have to move the chair does it for me.
So wish I had have had it sooner.
It is not the smartest of things, does not go in with the decor and surroundings but these are the things that I am now getting used to living with.
The Diazapam is only a short term solution to help with the muscle spasms, I think there are restrictions on how long a person can take it for, I am taking a lower dose than was prescribed because I found the higher dose was making me too sleepy and light headed in the day time,hoping that by the time I have to stop it the spasms will have ceased.
Are you taking anything for the pain?
When does your course of Forsteo end and what will you be given then?
It is good that you have the corset to give you the support needed.I have a brace not the comfiest of things but could not manage without at a time like this.
Before I got the Diazapam I had to come off the bed backwards on my stomach with my husband pulling my nightie to move me, he then had the job of getting the brace around and under me.
You would have had to see it to believe it.
I would not have been able to get on to my feet without both my husbands help and the brace.
The thought of any more fractures does frighten me now, the pain is just too much I have felt absolutley drained and exhausted by it and the lack of sleep.
The ROS nurses are usually very good to speak to but this time I did not feel the all the advice was good and although ,yes I have gone through this many times and know that this level of pain will eventually ease, it was said to me in such a matter of fact way that brought to mind that I was talking to someone who knew nothing of the extent of pain these fractures cause.
Well I do hope you continue to make good progress. Each day is a new one and even with the pain ,we are here to greet each morning, in the current situation we have to be thankful for that.
Sunseaandsand you are so kind thinking and asking after others when you have so much on your plate at the moment, thank you for asking!
I have been on Butec 10 micrograms per hour transdermal patches, tried going down to 5micrograms per hour but basically couldn't really function so for the last year continued on the 10 micrograms. I cannot take many oral meds due to food intolerances.
Once you're feeling stronger it might you feel you can look at the possibilities of changing hospitals? I felt I could not emotionally cope with attending the local hospital where, in my opinion, they had neglected me by failing to offer an alternative medication having stopped Prolia and then me getting the spinal fractures etc. For me it was part of the journey coming to terms with the life changing event, accepting I am permanently disabled no longer able to work or do any of my many physical hobbies I felt I had to change hospitals. Two and a half years later I’m still working at the accepting disability, but having hospital care that gives you confidence and is so empowering! I checked out the websites of the larger hospitals up to 50 miles away, then phoned the ROS help line to find out if any of the hospitals I’d found where involved in any Osteoporosis trials etc. as I was looking at moving into the area. Once I had ‘chosen’ I went to my GP explained why I wanted to go out of area, he considered my reason valid enough for the Trust area I live to agree for me to go out of area (it did help that there are already some arrangements for treatments to take place at the larger teaching hospital). The downside is needing to allow 3 hours travel time to get to appointments, but it’s worth it.
I am on the Forsteo count down, 10 days to go! Haven’t got a scan appointment yet but will be very interested in the results, been told it will be so time because of the Covid situation. At the March appointment the options of treatment where finalized having been discussed with me the previous year. As the consultant favoured Prolia, I did my homework before the appointment and had another life saving call with the ROS helpline nurse. The consultant was very understanding about my fear of going back on to Prolia especially if the Covid situation becomes more difficult I was just Not confident about difficulties if delay between injections, understand you’re on this for life if you start /restart (!) so a two year course of ‘holding medication’ in the form of Zoledronic acid yearly infusions. First infusion at the end of the month, hope not to get the flu like side effects, fingers crossed.
Take care, once you can manage a bit of sleep life seems very slightly easier to cope with! Good luck.
Thank you for your kind words taking the time to reply and sharing your experiences.
In 2017 when I had my lumbar fractures I also was given the patches, ìnitially I was on the original brand and did ok but then these were changed to butec because of cut backs on expenses. Once given these I had quite a few problems with sore areas where the patches were.
On one occasion I had spent a full afternoon in the sun but had been carefull to keep the patch covered the whole of the time. I was quite ill for the whole of the evening as the heat had released too much of the dose!!
I understood and followed the instructions about not taking hot showers but did not realize thesun would have the same effect.
It is quite strange really because I too am intolerant to many foods and medications, I have noticed being on Health Unlocked that when reading some posts it is mentioned along with Osteoporosis as are gastro problems too.
I have taken on board what you have said about the hospitals. I am already under a larger teaching hosptal for my treatments and dexa scan. It can take about an hour to get there dependent on traffic a little less or much more!!
I am wanting to be under the care of that Hospital from when the fractures occur, this is the hospital where they do not make mistakes when diagnosing my fractures.
It is my local hospital who always get it wrong and last January after looking at the x rays said I did not have a new fracture.I was sent home without any pain relief or help of any kind.
When my husband rang for help the next morning my GP pescribed oxycodone for my pain.
It was the teaching hospital who diagnosed the fracture when my husband called them asking them to get hold of the xray from my local hospital. All of these takes time and if it was not for my GPs understanding I would have been left in agonising pain.
I have raised these concerns with my local hospital and never had a satisfactory response.
My practice nurse told me last year it was possible to have a plan put in place to be taken to the teaching hospital when I have further fractures.
When I made persistent calls to the secretary at the hospital she said I would have to be under the orthapedic clinic.
My gp wrote to try get me an apoointment and I was turned down saying they can not do anything and send me to pain managment!!!
I think there has to be another way around this but as yet we have not found it.
I will not let my husband phone for an ambulance because as you know from your own experience you will understand I do not have any faith in my local hospital.
The ROS nurses I have always found extremely helpful up until this last time.
Perhaps they have recruited new staff?
I found the Nurse I spoke to so different from the rest. Her manner was no where near like what I have had in the past.
But I shall continue to use them.Their Knowledge is far superior to the nurses at the teaching hospital whom you are lucky to even get hold of.
I also like you have struggled to accept the changes to my life the fractures have brought with them.
Because of reluctance to be in a wheelchair I struggled on crutches from May 2017 till September 2018. My pain was getting so much worse and I realized if I was to get out of the house then it was going to by means of a wheelchair.
I hated it I really did and then I had the further fracture last January.
My mental health was not good at all and I began to have sessions with a counsellor.
These were ongoing untill the lockdown and I will have a phone review next month.
I made real progress, but of course it has not ruled out all my frustrations.
I have now completely accepted my wheelchair as my new legs and my way of getting around.
I can get quite angry now when I read people saying that they are not giving in and getting in a wheelchair.
It is NOT giving in, it is a new way of getting around.
I like you have still a long way to go.
I feel this new fracture has knocked me down a bit and my mood has been low.
The current sitution has not helped, after such a terrible wet winter I was so looking forward to getting out (wet and cold no fun in a wheelchair)
The fine weather arrives and with it Covid-19 then the fracture.
Well only 10 days and you complete the Forsteo.
Well done !! many people do not complete the course.It is a very good treatment and I so hope your next scan proves it.
I think the flu symtoms if you do get them will be only for a few days.
Zoledronic acid is my next line of treatment but the way things are going can not see it happening for me till the Autumn.
I wish you well on it and please let me know how you feel when you have had your injection.
Take and continue to keep safe x
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