My life is done...

[mollysuki]

I have several spinal fractures that have not healed and are unlikely to heal. I live with the pain daily and the only way to deal with the pain is to rely on opiates. I’m not prepared to keep upping the dosage. My bones are too weak for surgery. I’m 64 but feel 84. My life is over. I can’t go on with this never ending pain. Life is a bitch then you die. 😢

[Holdingbacktheyears]

I just want to give you a big hug and tell you I understand how you are feeling. Some days we have massive lows and it is hard to think that tomorrow this low will lift but you must go on telling yourself this will happen . You also urgently need to seek advice from a doctor do not take no for an answer or be fobbed off you need some one to understand how you feel and to help you to deal with it . Perhaps contacting MIND may also be a help for you having someone independent to talk to who will understand what you are going through and with the ability to help you.

I am so sorry you are in so much pain and wish I could do more to help you other than send you my love and understanding .

[Megams]

~Mollysuki - whilst I can not imagine the level of your spinal pain I just want you to know that other than endorsing what "Holdingbacktheyears" suggests I am holding you in my special intentions and prayers.

I hope my support doesn't sound trite but sometimes when a post appears like yours I add you along with others into my regular daily special prayers.

Sending abundant blessings your way from NZ ~

[MCW22]

I too have been feeling the same very low and tearful. My blood cancer is a doddle compared with the constant pain from the spinal fractures. I have a weekly 10mg pain patch but they are useless and have to take extra pain relief. I just try to keep my mind occupied with TV, Internet, books, phoning friends etc. I don't want antidepressants as I have enough medication to take as it is. I did find a back brace helped but as my spine is collapsing my shape is changing and now the brace doesn't go around me. I must get around to buying a bigger one. The only thing we can do is take each day as it comes and keep plodding along.

Best wishes, Carol

[Katy12 in reply to MCW22]

You poor thing. It is so hard anyway- to be dealing with vertebral fractures as well as blood cancer is devastating.

Try and get some sun every day to at least lift your spirits.

I hope your condition improves- and that you find some way forward to help you through the pain.

[Hidden]

Hi Mollysuki,

I'm really sorry to hear about the dreadful time you are having with these fractures and the awful pain you are in. Please give one of our Royal Osteoporosis Society specialist nurses a ring - they have lots of resources and a very good ear, and often talk to people like you.

Call our nurses free on 0808 300 0035 or email [e-mail].

[Walkingdogs]

I truly feel for you. If you live in the uk there’s a great group to join. Osteoporosis Support uk. You’ll get lots of advice from people in the same situation. ❤️

[Met00]

I'm so sorry to hear what terrible pain you're in Mollysuki and can't imagine how awful it must be to have to cope with so much at such a relatively young age. I agree with what others have suggested and would also recommend, if you haven't done so already, that you get a second opinion on what can be done to help you.

[Posy-White]

Oh, Mollysuki my heart goes out to you - I was a in similar situation, aged 60 spinal bones too weak for surgery, just not enough bone left etc. etc.

It is hell and the hell started to easy only when a wonderful OS consultant sorted out suitable pain relief, this for me was Buprenorphine patches 10 microgram/hour. My GP nor the local Pain Clinic did not seem to understand know what was needed.

I had days/ nights when I think I can understand what you are going through, I would urge you to try and get the pain side more under control, then you might be able to sleep for more than a couple of hours etc. ..... I found I then and only then I started to cope a bit better, my mental health and outlook slowly started to change.

My heart really does go out to you, I write through tears remembering the hell and knowing (I think) what you are going through.

Do call the ROS helpline, they understand I have always found them supportive.

I you can post again with how you are feeling, getting on etc. we are here for each other.

Posy White

x

[Jumpey]

It hurts my heart to hear your story.I can only echo others and say I am sending love. Please ask for help from your doctor and a therapist. It may be worth reconsidering your decision not to up the opiates.If you are in this much pain you could be getting some relief.❤❤❤

[mollysuki]

Thank you all for your comments and kind words. The last four years have been hell. My life as it was is now changed forever. Even walking causes me great discomfort. I have tried so hard to come to terms with the ‘new’ me, changed shape, not able to garden, osteo tum etc etc. In fact looking at my body disgusts me.

My family have been great but I hide how much pain I’m in.

The problem with opiates or any kind of painkillers is your body gets used to them and there’s no choice but to up the dosage.

I realise I need help coming to terms with the ‘new’ me but my heart wants the old me back. Someone who was fun and enjoyed life to the full.

If spinal fractures don’t/can’t heal what’s the answer-they get worse. The consultant said nothing to be done you can’t ‘fix’ some fractures.

[Met00 in reply to mollysuki]

I don't want to give you false hope, but I'm surprised your consultant has said nothing can be done. There are treatments I've read about for non-union fractures that can help, although I have no idea of the success rate. One of the osteoporosis medications, teriperatide (forsteo) has been shown to aid in fracture healing because it helps build new bone. There are lots of references to it if you google "teriperatide for fracture healing", but here's just one of these: nyulangone.org/conditions/n.... There are also a few bone stimulator electronic devices, including using ultrasound for bone healing. I suspect that these aren't available on the NHS, but again it might be worth researching and asking further. Also, have you had a referral to your local pain clinic, as they may be able to try alternative treatments (for example TENS, acupuncture) which do work for some. I can't imagine being in the amount of pain you're in with no end in sight, so really do feel for you.

[Eleanor01 in reply to mollysuki]

Hi I went to see a bone specialist in Poland where they cement bones there is also calcium granules called rexarubia plant based so the body can absorb it, which are also given to children to build their bones and of course you will be taking vit d3 and k2 capsules all natural.

Hope this helps x

[Katy12 in reply to Eleanor01]

Interesting Eleanor- are your fractures new and do you think this looks promising?

[Sunseaandsand]

Hi Mollysuki,

I can relate to all of your thoughts and feelings.

Life can be really tough and sometimes it feels like it is never ending.

You begin to feel like there is no hope but we have to fight back and be strong.

I am 66 years of age, I have had health problems since my early twenties, I nearly lost my daughter when she was 5 years of age, and again a year later because a gp did not recognize her illness had returned.

I fought for her and had her admitted to hospital that same day.

I had a routine procedure at hospital that went terribly wrong through negligence.

This has left me with mental scars which I have to fight to put behind me every time I visit a hospital.

I lost my beloved father who suffered a massive heart attack, then whilst caring for our Mother my only sister died of a brain heamoragge, she was out having a coffee at the time.

Three week later a car crashed into the side of us whilst we were stationary.

Two month later my closest cousin and friend from childhood was diagnosed with cancer leaving behind her all her family including (In her own words to me she would not see them grow up.

Another cousin also died of cancer, and my Sisters daughter's partner died when an artery ruptured.

She lost both her mother and partner in less than a year.

I have a gorgeous grandson of 22 years of age who has battled mental health problems since he was school age.

He has missed out on all the normal things kids and teenagers and young men experience.

It breaks my heart to have to see him struggle through life.

I have 6 spinal fractures two of which have happened during the lockdown.

Yes, the pain these leave behind and we have to live with is unbearable.

Like you I don't want to keep upping the doses of the pain meds.

Despite the pain I still want to be able to FEEL even if those feelings cause me to have a cry most days.

The hardest thing about the fractures is being able to cope with the changes they bring.

We just have to fight back and be strong.

By putting things in place to make life easier for us is a really good way to help cope and, above all accept that we can not go back to how we were, not ever.

Focussing on what we can actually do now is what get's us through.

I hated the thought of going in a wheelchair and spent 2 years struggling on crutches and missing out on going places ect.I was adamant I was not going in something that I saw in my mind as something old people use.

I became to realize this IS my life now and if I want to live it I have to get myself a power chair and get out there.

I have had to Sheild and been advised to continue, but you know what I have been so dissapointed I can not go out and about in my chair.

Don't get me wrong I have really bad down days and when I had the second of my latest fractures I actually said to my husband if I have to be in pain like this I do not want to wake up in the morning.

Yet I do want to wake up each morning and even though each day brings me pain I want to be hear.

I want to be able to spend time with my husband and family, travel to see my son, and when all this covid 19 is out of the way I want to be here to cuddle my grandson in the best way possible, as you will know how hard a cuddle is and a hug is definitely out of the question!!!

My message is these things knock us down but we have to get up we really do.

It is hard but I am sure with help and support from those around you that you can do it.

Remeber to always focus on the positives they are there.

Take care I am thinking about you. X

[Hidden]

So very sorry to read your post Molly, I take it that you have osteoporosis. Is this due to being on steroids for a long time ??

[Sparrowtracks]

I am so sorry to hear about your constant pain. When I go for my walk today, I will pray specifically for relief and hope for tomorrow. Hugs!

[Fruitandnutcase]

Oh Mollysuki, I don’t even know what to say, I suspect you are living everyone with osteoporosis’s nightmare.

Hopefully some of the suggestions you have been given will help you find some sort of pain relief. I know what you mean about ‘not being the me, you used to be.’ Even if your consultant can’t operate surely he / she must have some suggestions for things to alleviate some of your pain.

Try and remember that even if you hate how you look now - underneath you are still the same person you always were and you’re still the very precious person your family love.

[mollysuki]

It has been nearly 3 and half years since my fractures so I don’t think they’re going to ‘heal’ now.

[Sunseaandsand]

Hi, I wondered have you had an MRI and been told they have not healed.

I ask because each of my fractures have left me with more pain.

It is known as biomechanical pain and I was told at the pain managment clinic that unfortunately all that can be offered are opiates, initially when my fractures occur oxycodone just about knocks me out. Short term they work well but long term they will only keep me on a very low dose, like any other strong pain meds you become tolerant and they stop working.

The best way I find is to come off them for a short time and then restart them.

This way you at least get some benefits.

I can only have a small dose because of low body weight, the more you weigh the less effective they are hence you can have a stronger dose.

Although rather uncomfortable and I have to say unbearable in the heat, I find it beneficial to wear a back brace for short periods of time.

I have been battling for the ladt 18 month with terrible pain under my right rib, feeling of movment and burning which I now know is as a result of all the changes in the spine, ligaments and muscles.

It drives me to the point of madness, for example I can not even pick a knife and fork up and sit for a meal, my husband will put my brace on and it will give some relief for a short time

By the end of the day I am unable to hold my toothbrush without it.

It may seem to you an undesirable thing to wear but trust me it will offer short periods of relief.

If you are in a position to do so and do not already have one it would be worth looking for a reclining chair.

Being more comfortable will relax your muscles and help with your pain.

Distraction is also of great benefit.

Having always being an active person myself, never one to sit for long or watch tv.

I hated it to find all I could do was sit about and even that is painfull for me now, I even felt guilty!!! that I could not do the chores around the home anymore.

Acceptance IS THE HARDEST THING, Not being able to get in or out of bed on our own,sit on a toilet comfortably,go for a walk, dance, swim, play with our granchildren or even hold them as babies.able to wear long dresses, having to wear flat shoes, not being able to wear a bra, even our pants feeling tighter because everything has moved down.

All the things that people take for granted.

My lovely handbags have been replaced with a bag strapped to my wheelchair.

The list goes on and on and on.

You are not on your own we are all here for one another, who better to understand than others who are going through the same thing.

It really does help, since joining this site and hearing from all the wonderfull caring people it has lifted my spirits ten fold.

Each day is tough, and recently tougher than the day before.

Yet the days pass quickly and it will soon be another day to wake to .

I thank god that I am still here because I can still smile and although it hurts I can still laugh.

We are all here for you, keep wrighting it will help you through difficult times. X

[mollysuki in reply to Sunseaandsand]

What a lovely message. Most of what you say is what is going on with me. Apart from the grandchildren. Oldest daughter unable to have children due to a hereditary condition. The youngest daughter not yet ready for children.

As you say acceptation is the hardest thing. Yes I’ve had it confirmed that I have several mild wedge fractures and T6 and T8 have not healed.

I’m in such pain every day. I also have a large hiatus hernia. Everything is so squashed up it feels so very uncomfortable.

I miss dancing, laughing and so much more.

I agree with you about the opiates. I rarely take them as they make me hyper and end up doing more than I should.

This reply is all a bit disjointed as I’m doing in my phone. But thank you for lovely kind words but more importantly YOU GET IT!!

I’ve been looking into braces so will have another look at what might suit.

THANK YOU 🙏

[Sunseaandsand]

Hi Mollysuki,

Thank you for your lovely reply.

I hope that in some way my reply has helped you.

The pain is overwhelming and no one, not even those closest to us will ever know what it is like because only we can feel it.

Your husband and daughters would want you to tell them how much pain you are in.

Just like if it were they who were in pain you would want them to tell you.

I often say to my husband that even though he can see how much pain I am in he will never know how it actually feels.

The feeling under my rib drives me crazy I have nick named it my python!!!

But seriously it gives me so much pain and the only thing that stops it is to lie down.

How many fractures do you have and were they caused by taking Prolia?

I have wondered how people can have these fractures and not even know they have had them.

Aren't they the lucky ones!!

One thing I try to remind myself is that people do not see us as we see ourselves, we are the ones who see all the things we do not like about ourselves not others.I tell myself when I am out in my wheelchair they do not see the chair it's me they see.

I have 2 braces now one is called a spino-med this was given on the advice of orthotics department and was to use for the fractures in my thoracic spine.

The one I am using at the moment is classed as a body belt brace it is more for fractures in the lumbar region but does also help with the lower part of the thoracic it is a Pontsana mobil lumbar back support belt.

Prior to this I had a Lumba med support brace, I prefer the Pontsana.

I hope you find somthing suitable for yourself, the orthotics dept at your nearest hospital may be able to help but you need a referral.

Take care and please stay in touch. X

[Katy12]

Hi - feeling for you. I also am 64 And I am in the same position as my mum 18 years older than me.

My world has also been turned upside down from rebound fractures. However, I’m wondering how old are your fractures – you mentioned they are unlikely to heal?

[Dmck009 in reply to Katy12]

Can I ask how you got rebound fractures. Did you stop a medication. Praying for you.

[mollysuki in reply to Dmck009]

No I didn’t stop a medication. Just unlucky 😟