No bone meds: Just back from my... - Bone Health and O...

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No bone meds

Collywobbles64 profile image
13 Replies

Just back from my rheumatologist, and he has decided I do not need bone meds as my risk of fracture is low. Although I am happy about this, I'm still left with the problem of back pain and low mobility. Due to see the neurospinal consultant in December, so hoping that finally I will get some help.

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Collywobbles64 profile image
Collywobbles64
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13 Replies
Sunseaandsand profile image
Sunseaandsand

That's great news, I am sure you will get to the root of your back pain.

An MRI of the spine will reveal what is happening to cause the pain.

I have a number of other problems in the spine that add to the pain I have from my fractures.

Collywobbles64 profile image
Collywobbles64 in reply to Sunseaandsand

I have had MRIs. The problem is that it does not show my sciatic nerve being impinged, but as I pointed out to one consultant MRIs are taken in the horizontal position, they do not show what is happening when you are upright.

Sunseaandsand profile image
Sunseaandsand in reply to Collywobbles64

Yes when upright everything is squashed down.

I have to also say things can be and are often missed.

I recently asked for a copy of the full report of my MIR to be sent to me..

When I received it we were shocked and angry to see the inconsistency of the 3 scans I have had done over a two year period.

I have now taken this up with the hospital and am awaiting their response.

veriterc profile image
veriterc

You poor thing - why should you have to wait until December for an appointment? Especially if you are in pain - and have loss of mobility. In today's NHS I have come across crafty ways of shooting up the appointments ladder and if you loo here this might give you a wry smile and some ideas! aftercancers.com/category/g...

Kathleen22 profile image
Kathleen22

I am similar although I am supposed to take the meds but won’t. Best you don’t so that is good from that standpoint. I have back issues as well. I avoid having any kind of back op though. I am nearly 75 and it would depend how old you are. I have degenerative disc disease, scoliosis, arthritis, osteoporosis and sacroiliac pain if set off from one of the discs.

I just try to manage it but I am partially disabled so understand the mobility thing. If I was younger I might view this differently. It is a shame though as walking along the beach is out, getting on a plane is out, doing anything much is out.

Having said that, I look at what I can do.

My brain is my main attribute which allows me to read, write, interact, think, and do all the things that the internet offers.

I can walk short distances but better than being in a wheelchair.

I can go in the car for short distances and longer ones with breaks.

I can enjoy my grandchildren and go to movies where there is a recliner.

Collywobbles64 profile image
Collywobbles64 in reply to Kathleen22

We could be sisters! I too have DDD, scoliosis (mild), osteoporosis, facet joint arthritis, sacroiliac pain, HBP and multiple sclerosis, but I'm only 54. I now have a blue badge which is a god send, but I believe an operation would make a difference to me. there are things I can do unfortunately it's not much fun doing things on your own.

elaine2447 profile image
elaine2447 in reply to Kathleen22

Sorry you are suffering like that. I too have started with scoliosis which is due to a T5 compression fracture, arthritis, also problems now in the lumbar region but the most recent is this awful feeling like a tight bar across my stomach directly under my very small bust. Every time I google that, it comes up with the MS hug but I dont have any other symptoms. I had another dexa scan recently after five years and the spine has deterioriated a further 11 percent and hips 6 percent.

I too refuse any of these awful medications, I am not quite your age yet but I have to say I do admire your spirit. Mine seems to have gone.

elaine2447 profile image
elaine2447 in reply to Kathleen22

I find these invaluable, I have two of them plus two of the single ones. Sometimes if I venture out to the shops which are only 4 mins walk away, in the winter, I wear one under my coat and just hope the velcro doesnt let me down, lol. I dont have a car and live on my own apart from the four cats amazon.co.uk/Hotties-Soothi...

Sunseaandsand profile image
Sunseaandsand in reply to Kathleen22

Hi sounds like you are doing quite well and the fact that you focus on what you can do rather than what you can't is a very positive attitude.

Although I am wondering why you can not get on a plane??

I too have all the problems that you have plus spinal stenosis in cervical and thoracic spine.

Also added to this, 5 spinal fractures both in lumbar and thoracic spine.

Currently I am visiting family abroad and the excellent help of the airline and airport make this possible for me.

So I can not help but wonder where the difficulty lies in your getting on a plane.

Siamang profile image
Siamang

I’m currently having sessions with a physiotherapist to improve my posture. It’s helping my spine!

Collywobbles64 profile image
Collywobbles64 in reply to Siamang

Are you paying privately for physio? The NHS sent me to the back class with about 10 other people and they gave us 3 exercises to do daily. Complete waste of time for me, but I am due to go back next week for a one to one.

elaine2447 profile image
elaine2447 in reply to Collywobbles64

A word to the wise for anyone having physio with osteoporosis in the UK. I don't know why, but they seem so ignorant and I have given up as apart from being of no help, the first thing they say is "see how far forward you can bend"!!!!! This makes me so angry and I respond by saying no thank you, I do not wish to fracture another vertibrae. We do not seem to have any expert physios in the UK like they do in the US. I bought a book by a well known PT in the States, Sara Meeks "Walk Tall", which has been invaluable.

Ihave four cats to contend with but made long wire handles for their litter boxes and bouht no bend bowls. The golden rule with osteoporosis, is never to bend from the waist downwards.

elaine2447 profile image
elaine2447

Glad that you don't have osteoporosis severely as it seems most of us do and already fractured. Your pain could be any number of things, from arthritis to disc problems. I presume you have already had a dexa scan to confirm you dont have any worries about osteoporosis but have you had an MRI which can pick up most things. Pain is horrible I know when it it is relentless but in my case worse by the fact that every day I wonder if I am going to have a fracture. Good luck.

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