Re Bound fractures - Recovery : Hi everyone , I... - Bone Health

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Re Bound fractures - Recovery

AmandaTF
AmandaTF

Hi everyone , I sincerely hope you are all well ❤️

I was diagnosed with multiple spinal fractures (due to the cessation of Denosumab) in October 2019.

I just wondered if anyone can discuss recovery with me .

I’m still having pain . When walking it’s my hips that hurt as well as the fracture site . I’m also experiencing “waist” pain if you get what I mean . I’m assuming my muscles are still trying to recover following weeks of low mobility?

Any comments would be appreciated as I’m beginning to think “this is good as it gets” 😢

Best wishes. Amanda x

32 Replies
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Hi,

Latest for me is hips feel weak and towards end of day start to make walking more painful. Very late night feel like they are going to give way so rely on stick and walls.

Even though original acute pain took six weeks to quieter which gave me huge relief the pain from fracture sites has remained pretty much the same. I'm being careful but aches that are very strong can continue for days even after attempting a small lightweight pile of ironing. Too much washing-up and I feel like someone has used a whip across rear ribs.

By bedtime although laying down is a relief the pain changes & it can take me a while to doze off. For three mornings in a row the pain has been hell & I've kept my nightshirt on. Every weakness/pain around fracture sites seem not to have improved for two months.

Tummy hates me as obviously not impressed at being squashed 3" and as food goes through me it seems to aggravate the aches in lower back. I feel huge yet clothes fit as before but waist seems larger and tender still. Being stuck indoors hasn't helped my plan to walk and get some strength back in that area. We can hardly do sit-ups can we!

Apart from that . . . Wish I'd never touched the Prolia. This isn't easy to get used to and I resent the way this has stripped me of the ability to do even the simplest task without looking like I'm deformed or in need of clean underwear. If you get my drift there. I feel twice my age and huff & puff like a fool.

You take care. Apology for the rant! Got a feeling you'll understand.

Gentle hug from me to you,x

PS. I'm concerned for all those that may have had appointments stopped due to current circumstance for their next jab of Prolia. You couldn't wish this on your worst enemy.

AmandaTF
AmandaTF
in reply to catno1

So good to hear from you .

Your issues are just the same as mine. I too have lost 3” in height - so digestion is a huge problem as I’m “squashed”

Still enjoy time in hot tub for pain relief - although getting in and out is not a good look !

Im googling quite a lot - probably a bad idea - I’m thinking re bound fractures are completely different to “normal” fractures ? So info on line is a little vague .

I feel like I need to stretch - too scared though ! I’ve looked at exercises on osteoporosis site but not sure if they are right for me ?

So so angry at this situation - the more I google the more I see that an alternative medication should have been given.

Hugs 🤗

catno1
catno1
in reply to AmandaTF

Just left a private note re hips.

Yes, we were ignored, sadly by doctors who should have know to put us onto something else immediately.

As for info online I agree this is virtually non existent. We aren't prepared to give up and buy a wheelchair, forgive me there, because you, like me & loads of others now sadly have to deal with the results of the damage and somehow keep going.

My last 'doctor' asked if I was doing my 'stretching exercises?'. He didn't and couldn't explain himself. Whilst in hospital I was told no physio as dangerous. I'm terrified of waking and stretching after doing it once a couple of months ago. The pain after was indescribable. Makes sneezing seem easy and that still hurts!

The lack of info shows how the subject has no interest value as again I do believe 'age related' subjects are unworthy. Disgusts me.

After diagnosis and the initial support and frequent appointments die down it has felt like I cannot find anything that relates to rebound or otherwise except avoid falling etc etc. Walking is the only thing that appears safe.

Take care,xx

springcross
springcross
in reply to catno1

If you are in the UK, have you tried ringing NOS (National Osteoporosis Society). They are very good and can give you good advice. 0808 800 0035 free helpline.

catno1
catno1
in reply to springcross

Bit late for that. Prolia multiple rebound fractures, slipped disc & nerve damage last Oct/Nov. Lack of monitoring & care as usual. I've had Lupus SLE for fourteen years and should be used to 'the lack of' by now but this has been hell. Dexa scan was bad enough before, lumber spine -4. Now -5.7.

Did ring NOS but didn't know anything more than I knew already. Add to that my age, 52 similar to AmandaTF and all you get is a stuttering nurse.

So appreciate you sharing your thoughts I promise. Sadly my lack of care/monitoring is reflected across the whole of this site and I don't mean just this particular community so please be patient with my cynicism. Happened to my partner as well. His parting pressure from Royal Marsden was type 1 diabetes.

You take care your end & again sincere thanks,x

springcross
springcross
in reply to catno1

That really is absolutely dreadful. I'm sorry to hear all that you have been through, what a continuing nightmare. I was having three monthly infusions of Pamidronate for about eight years and then the consultant changed and I was given an infusion of Zoledronic acid. I only had one and after that I refused any further treatment because of side effects. I was offered Denosumab but refused as I had read about side effects beforehand. Reading what has happened to you has made me think I was right to refuse. I can only wish you all the best and hope sincerely that your situation somehow will improve. xx

catno1
catno1
in reply to springcross

Your kind, thanks. AmandaTF who wrote the post here had the same. And sadly many others have suffered rebound fractures after Prolia. You did the right thing refusing the drug believe me. I've had Lupus, APS & osteoarthritis for years so used to some things but I feel for those that suddenly found themselves disabled by that drugs effects and full of pain killers that were new to them. It's been hard believe me so you take care please,xx

I’m not surprised yet u are having a rant. It’s hard to know what to say to you and AmandaTF - apart from the pain which sounds agonising you must feel totally let down.

It’s awful to think that you have ended up in so much pain because of something that was supposed to help you.

I’ve only just discovered I’ve got osteoporosis but like you ‘the lack of’ has definitely been a contributory factor - when I look back now, several opportunities to check my bone density were overlooked.

Trouble is there’s not much you can do when it’s too late is there. ☹️

Apart from sites like this no. You only have to search Prolia and vertebral/rebound fractures on here to read some awful stories. What annoys me is so much information online and yet our alleged specialists seem to know less than us. Due to Lupus I was under the senior consultant in rheumatology. Fat lot of good that did me. Forgive my rants re age anyone, my partner is twenty years my senior, but I cannot get over the ridiculous start last October - my age confused the issue when it came to seeking diagnosis of the fractures. How do younger folk than us deal with this and other problems?

I'd had Lupus and been on steroids for 11 years when they did the first dexa scan. Most sites on here have stories galore which fell stories of the horrors of lack of monitoring. I had had lower back pain for years but it fell on deaf ears. Osteoarthritis was diagnosed at the same time in my ankles. This was apparently older than the Lupus.

We get a diagnosis, get a prescription aimed at us and then left to rot. After fourteen years my patience at this hasn't improved! My GP looked at the recent scan results, looked at me and had to look Prolia up. Hope this drug gets withdrawn. How are those whose 6 monthly injection appointment as being cancelled deal with fractures in a month or so! I feel for them truly. I hate to think of the current suffering of long-term patients who need help at the moment. We feel like we're a nuisance and silly when we have further problems.

Take care your end and thanks,xx

Same here. I was repeatedly assured by GP that the horrible pain and muscle spasm was “just” mechanical low back pain and was pretty much told it was my fault for not doing the exercises my (private and paid for by me) physio gave me. In the end I was only diagnosed because he said I must insist to the GP that I had an x ray. I think it’s very likely that all the fractures happened quite soon before that because the pain then got worse for a few weeks. So if the GP had taken me seriously earlier on I might have avoided the fractures, additional pain, loss of height, squashed protruding tummy and restrictions on my ability to do things I just took for granted before. I’m furious actually but I’m trying not to dwell on it because it’s done now and I don’t think the GP will ever admit any responsibility or apologise.

AmandaTF
AmandaTF
in reply to Nuthatch

I’m sorry to hear that .

I had paramedics get me out of bed saying it was muscular - I’ve since been told that probably gave me further fractures - I’ve had up to date info since my initial post I have 5 fractures and not 4 as i thought .

I’ve got bulging discs - nerve damage etc - I assume from the feature site ?

I’m grateful for this forum - it’s good to talk .

I wish you well - try to enjoy the sun x

Nuthatch
Nuthatch
in reply to AmandaTF

Thank you - the sun is lovely, I hope you are enjoying it too

Maverick2
Maverick2
in reply to AmandaTF

Prolia works by supressing the immune system. In the rebound phase, the immune system is highly overactive. The hot water bath may give temporary relief but severs the rebound phase. Hot water activates the immune system leading to the secretion of cytokines TNF which relaxes the muscle resulting in pain relief. However, the immune system activation also makes the prolia withdrawal more severely. I suggest you use warm water. Exercise also activates immune system so I will avoid it in the rebound phase.

Some indicator suggests that rebound happens for more than 6 months.

The trick is to make rebound slower and longer.

I also urge people who use biologics to keep track of their LDL and HDL

P.S: I am just a patient with knowledge of immune system

AmandaTF
AmandaTF
in reply to Maverick2

Thank you for your reply . I Must confess all your comments are new to me .

I have rheumatoid arthritis too so I my immune system is already compromised.

I’ll have to find out more information on the points you have raised

Thanks again

If you are in the UK, have you tried ringing NOS (National Osteoporosis Society). They are very good and can give you good advice. 0808 800 0035 free helpline.

Springcross Thank you for your reply . As has been discussed NOS can’t help me . I did call them but as soon as I mentioned my age (52) and Re bound fractures the call soon came to a polite end . Feel very alone with this situation .

My Good wishes to you x

I'm really sorry all this has happened to you, what a nightmare. I wouldn't worry about too much Googling, you never know what you might find on there, sometimes help can come from unexpected sources. Wishing you all the very best and I hope something can be done in the not too distant future to ease all your discomfort. xx

Try Jungle Balm It's from Indonesia

Regards Peter Mackenzie

If you have Facebook, there is one group called "Prolia Side Effects and Complaints" that have members recovering from rebound fractures that may be able to help you. There is also a section with the latest publications regarding Prolia. Luckily my doctors prescribed a relay drug when I stopped Prolia. It has been 18 months since my last shot. Good luck.

AmandaTF
AmandaTF
in reply to msw67

Hi MSW67 thank you for your reply - yes I do belong to that group .

So glad you got your relay drug - that’s what should have happened to me (and many others )

All the best x

Meganisi
Meganisi
in reply to msw67

Hi there, are you still taking your rebound drug? And for how long? I am in the same situation - but am at 15 months and endo said I can discontinue the Actonel. Am slightly nervous to do so....

msw67
msw67
in reply to Meganisi

Yes. I am still taking alendronante. My doctor has been monitoring my serum CTx values and I was hoping to have a bone density done before stopping.

Meganisi
Meganisi
in reply to msw67

Yes same here. CTX and P1NP. If you are at 18 months since your last injection that’s about the same as me - my last Prolia was June ‘18. But I count from when it was last due ie Dec 18. I had a bone density test in Dec 19 and showed a 5% increase but I managed to sustain a hip stress fracture due to being on Prednisone and probably too heavy weights in my lifting regime (given the prednisone).

Hello AmandaTF

Sorry to read your story sadly the same happened to me, only it took 3 months for anyone to find I had 8 spinal fractures. I’ve lost more than 4 inches in height.

The main things that helped me was to get the pain under manageable control so I could sleep at night (albeit I wake two or three times a night to re position I can go back to sleep within 30 minutes). I was referred to the Pain Clinic but by then I had worked on positive thinking and learned how to help myself relax etc. It was the OS Consultant that sorted out pain management medication that worked for me, Butec patches (Buprenorphine), as no oral medication suited me.

To begin with I found it very hard to move my arms away from my body, I couldn’t reach out, even eating using a spoon was difficult. In order to walk I was thrusting my hips forward. I found it hard to hold my head up, and still do but since I gained core strength it is greatly improved. The Physio recommended crutches as poles / walking sticks didn’t give me enough support. I also found breathing difficult; I did basic breath control blowing raspberries, blowing out candles etc. I eat three very small meals at the set family time and have an extra three snacks during the day; this helped me keep weight on and aided my poor squeezed stomach!

To begin with I did lots of chair exercises (the sort that are on the ROS website), practiced standing on one leg handling on to Kitchen sink etc. I now do about an hour of physio each day two lots of 20 minutes and on going thing throughout the day as part of daily routine. Mainly core body strength and standing, plus 10 minutes on an exercise bicycle. This is over two years down the line.

The therapy treatment that helped me the most (I still go every three weeks) was a McTimohey chiropractic, my husband virtually carried me in and I walked out with the support of crutches. I still now get hip, neck and shoulder problem, which, thankfully get sorted out at each visit.

Hydrotherapy helped but when I first started I ended up in bed for 48 hours after a session (I’m the sort of person that over does things!). This is on hold at the moment and I need more advice about my neck before I go back, but understandably last hospital appointment cancelled.

I think others have managed to make a better recovery than I have, guess it is also to do with the damage done in the first place. I was in full time work (young school aged children who have disabilities) but it became clear I could no longer work. It took me some time to come to terms with what had happened to me. Once my breathing improved the physio suggested a spinal corset which I wear during the day and by going to bed for a couple of hours each afternoon I feel I have some quality of life and can be cheerful etc. I cannot walk far, last summer I got a wheelchair with this I felt and am less socially isolated (bit funny to write that given the current situation!), also with going everywhere by car my husband was putting on far too much weight so pushing me up the local hills in the town is his new exercise!

Good luck with your recovery it’s very early days for you and you have every chance of making a good recovery, start with small easy things you can do and slowly build up time doing it etc. One good point to remember is not to 'breath hold' when exercising, you can blow out but that can lead to hypo ventilating, I found slowly counting is the easiest way.

Best Wishes

Posy White

AmandaTF
AmandaTF
in reply to Posy-White

Thank you so much for your reply.

My fractures were diagnosed in Oct 2019 but my pain had been increasing for months so no idea how long they had been there. One fracture was classed as “older” than the other 3.

Prior to diagnosis I did use a physiotherapist , to try to get some pain relief (I did ask my RHEUMY nurse first) sadly my new consultant believes that the physio may have prompted another fracture - the following day my husband had to call an ambulance - paramedics saying it was muscular got me out of bed using gas and air - probably giving me another fracture .

I am very dubious about physio / chiropractor but am glad to hear that it helped you so much and maybe I’ll consider it in the future .

We bought a hot tub - which helps so much with the pain but some days the actual process of undressing and getting in and out is just too much .

I have looked as the ROS exercises if I’m honest I’m scared to do them - I do need to try something so I’ll have another look. I’ve been trying to do a daily walk - got my back brace on , some days it’s not too bad others it’s torture . I’m just so frightened of more fractures - as I’m aware the re bound affect does last for several months after last Prolia injection .

I have had two Zoledronic infusions - this is a yearly treatment meant to help with the rebound affect - the first was in October according to blood test in dec my body had already absorbed it hence the second one .

I’m currently employed at a secondary school - I’m a science technician - sounds more important than it is 😂 so this involves lots of lifting of equipment , bending etc. I usually walk 5 miles between 8 and 4 when I’m working . I do 4 days. Due to the current situation I’ve not been back to work yet school have been very supportive - phased return etc. In my head I feel I can go back but in my heart I feel that I cannot physically do my current role. It’s so very distressing - I don’t want to retire at 52.

Thank you again for your reply - it’s good to talk

All the best x

Yes, I have similar aches and pains, my hip needs doing, but on hold obviously, I have hip pains in both, around the sides and in the waist area. I was doing good,my GP suggested Pilates which I found brilliant, its a one to one, and she is spot on, also doing hydro and physio, all come to a halt unfortunately, I will resume asap Pilates. Also I wear a tens machine, that is also good. Please try Pilates, one to one if you can afford it, get a experienced one, I struck lucky. X

Hi I have osteoporosis and have had three infusions of zolendronic acid. The last was just before the coronavirus and I was supposed to have follow up DEXA scan. Plus over the last two years I have had worsening of hip and lumbar pain. Having tried ordinary physio to strengthen my core I was finally referred to a Specialist Spine and Back Pain Clinic. The assessment suggests a trapped nerve possibly caused by fracture. I was due to have an MRI but both of the tests were cancelled because of the virus.

Thankfully I can walk gently but standing for any length of time is painful and I have to be enormously careful of twisting back, so I kneel on the floor to put washing on and must look quite comical as I use my arms to help me stand up again! The specialist physio said that a trapped nerve can cause muscles weakness, and I looked that up and it does! (L2 and L3). Because of other illnesses my general exercise is limited and I have quite a few food allergies. Having watched my mother cope with osteoporosis (she also shrand in height) I want to do all I can to prevent worsening symptoms, but it does seem that it is one of those areas in medicine that still need more research, which costs a lot of money.

I went to a course on managing pain a couple of years ago and found that quite helpful. When we have acute pain for sometime the nerve pathways become hypersensitised. This can continue even once the original source of pain has healed. So two things to think about: one have you got a possible trapped nerve and two if your pain pathways have become oversensitised are the ways to calm it down? The course was a combination of medical help and psychology and it did help. For instance I know that sitting at my computer for too long makes the pain worse, so the solution is to train myself to only sit for shorter periods. Taking my pain medications regularly helps the system to 'quieten down', Using warmth was recommended if that helped. Gentle stretching exercised within your limits (so DON'T set the pain off) was also recommended. It was very much about finding what works for you, and included trying to not let thoughts about pain become overwhelming as this aggravates our reaction to it. My GP has given me additional medicine to help which at first made me very sleepy, but that is wearing off and the pain is more bearable.

Hope that you find some ways of managing it better now that your fractures have healed.

This happened to me too. I was on Prolia for six years when because of personnel change at university clinic my shot was delayed. I had three vertebral fractures within six weeks! That was two years ago and my active life came to a halt. Standing/sitting for more than half an hour is painful. Only relief from pain is lying down. Driving too painful. Traveling impossible. Outings with family painful. Fractures are healed but left behind a lot of dislocation and pain. Lost about three inches of height. Physical therapy was helpful and I do exercises to strengthen core. They help but muscles don't replace bone . So sorry I ever agreed to Prolia!!!!!

AmandaTF
AmandaTF
in reply to Viazoy

I’m so sad to read this - I can really relate to you.

I wish you well x

I should add - besides above --I was put right back ON Prolia after these fractures and am still on it. Needed dental work has been much more complicated because of this and other issues too associated with Prolia. But there seems to be no safe way off. This drug basically destroyed my active life!

I blog about my experience with Prolia at JoansBackboneDisaster dot com.

AmandaTF
AmandaTF
in reply to Viazoy

Just found your blog - I look forward to reading your story .

I have to say you look amazing

X

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