I am in the UK and, at the moment, I am overwhelmed with pain from what I believe is another fracture. I started fracturing 6 years ago and dont feel that I am under anyone in particular who can help with day to day living etc. So far we have spent out on a chairlift (£5000) and an adjustable bed that goes up and down (£2500) and tried to change the car (too expensive to mention), a huge amount of our money has gone and the bed is agony getting in and out of, probably need a chairbed or something else, the car had me screaming in pain when it was high to get in to and the seats (bucket) hurt. Starting to feel overwhelmed with no help. Has anybody received help and advice from social services, had any help with advice as to what would work best bed wise and also any help with providing anything or financial support, we own our own house (just a small semi) so doubt we will get any help but even having someone to offer help on painkillers or car seats, anything would help. If you dont want to show public, please feel free to message me privately.
I hope we can help each other. I sometimes feel I am just ready for a care home! I am only 69
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Hi Comc Sorry to hear about your fractures. I too have spinal fractures and I know how painful they are. I live in Spain where I get my treatment. The things I found most useful when I came out of hospital were. I bought a bed rail that goes under the mattress to assist me turning over and getting out of bed. Also bought a back brace to wear to give me support. I don’t wear it all the time. Made me feel more secure. I also bought a raised toilet seat. I have a recliner chair to assist me to stand when needed. I have had a wide range of pain medication. I was a heated pad that I keep in my chair to help with the muscle spasm. At the moment I am waiting for an appointment for a epidural to help with the pain.
I have a tense machine and do gentle back stretching exercises every day. These have helped with the pain. Taught to me by physio. I hope this helps. I’m also the same age as you.
Hi I take 10mg of Oxycodone/naloxne morning and evening. If I can manage I only take 5 mg. Plus Gabapentin 300mgs 2 to 3 times a day for the nerve spasm caused my trapped nerve, due to compression fractures. Also 10 mgs of Amitriptyline on a night. I try to reduce these medications as much as possible, but was told if my pain isn’t controlled I’m less likely to be mobile. I also take paracetamol for break through pain occasionally. At the moment due to nerve damage my walking is very limited. I use crutches, but was recommended to use a wheeled walker so I could sit down regularly. Really can’t get my head round that yet, so am sticking with the crutches.
So sorry to read your story. The first place that springs to mind to call for help is the ROS helpline. Give them a call if you have not done so already. It is a start. theros.org.uk/information-a...
Reading your post is almost like reading my own diary. My spinal collapse happened nearly two years ago and I spent six weeks in hospital. Fortunately I was still having bed baths and needed to hold on to the small side half rails. The occupational therapist organised a hospital bed which raised up and down and top and bottom for use at home.
My husband had got rid of my bed whilst I was in hospital as although it was extremely comfortable it contributed to some earlier vertabral breaks as it was too soft to get out of.
A year on and I returned the hospital bed and bought an electric one which although the top and bottom moves up and down I cannot alter the height. I sit on it and my husband helps swing my legs onto the bed and then puts his knee on and I push my feet up from there to the right position to adjust the top and bottom. I put a thin pillow either side of my body as I lie on my back and a pillow tucked into my neck. This acts a bit like an armchair as I sleep about a 45 degree angle. He has also adapted my old bed lever as the bed is slatted and would not fit or would break the slats. He has welded a "foot" to it so if I pull or press against it, it does not move. You can buy ready made ones from Amazon.
Social Services came out to me the day after I came home from hospital and asked some challenging questions, like would I want to be resuscitated if I became very ill!
Fortunately they also asked easier questions about help and aids. We live in a bungalow so did not need a lift, but we have been given handrails in the bathroom, a frame toilet seat, a rail for the front door and a half step as the doorstep is high. A fire officer came round and fitted new smoke alarms and made a note of points of entry/exit if I was unable to get out of my home myself.
I had six weeks free care and thirteen weeks of physio and then I was left to get on with it.
I have also notified the water/electric/gas companies about my disabilities and I am on an Emergency List in case these utilities have problems. I have already had loads of bottles of water when there was a problem with the mains water on the estate.
We had to sell our car as I could not bend to get into it or get out. We bought a used van with a lift at the back for my wheelchair which initially I was strapped in but now I use the lift to get up into the van and hold on things to settle into the front passenger seat. It was a lot of money but I am VAT exempt for disabled aids including adapted vans so that saved a lot.
Many people do not realise that items and aids made for disabled people are VAT exempt, even the little picker uppers! Just go on to GOV.UK and search VAT Exempt. Even my bed was exempt and saved nearly £400. You just sign a declaration.
Be careful of the dual recliner chairs, mine also adjusted lumber and head. Getting out of it one evening added to further collapses. The paramedics took 90 minutes to get me out of it and onto a stretcher because of the pain.
Ring social services and let them know of your problems. You may get moved on from one department to another but you should be able to get advice and maybe help from an Occupational Therapist.
We also own our small home so when a referral was made to the local council for backdoor access the forms stated we must not have more than £6000 in savings, which luckily (or unluckily whichever the way you look at it) we do. It sounds a lot but that is our funeral money so once spent cannot be replaced on fixed income. I am 68, my husband 69 and we have the State Pension and a (very) small private pension so we are not eligible for further help.
Social Services seem to do more for every day living which is free but it seems the local council have strict financial rules.
Hope you get the help you need, sorry for the long reply.
Hi Bluebell 999 Do you find the firmer mattress on the hospital bed helpful. I am getting a lot of spasms getting my legs in and out of bed even though my bed is now low. How did your recliner make things worse?
I bought an adjustable bed after a year with the hospital bed. I sleep at about 45 degrees and cannot lie flat because of kyphosis and spondylosis.
The mattress is sprung and came with the bed. The positions of my pillows help me a lot. The only thing wrong with my own bed is I cannot alter the height from the ground, as I have shrunk, so I try and back on to it and then my husband lifts my legs and I wiggle a bit to get into the centre. It also has slats, so the old bed lever I had, which used to slip between mattress and divan base, was altered by my industrious and imaginative husband and I can pull or push on it to get up or move up in the bed without it moving.
After 15 months of barely going out I found myself miserable, in pain and wondering how much longer it will be before I join the real world, I could feel myself going downhill mentally.
I looked on Amazon and found in their Warehouse section a blue silicon type single hospital mattress, going cheap because of damaged packaging. It's fine, a good wipe down and it is like new, which it is really!
I scoured auction sites, freebay, gumtree etc and found a used electric adjustable bed raiser for the top half of the bed. My son and husband drove 100 miles to pick it up but it was a bargain, £35, compared to the £3-400 bought new.
This has given me a new lease of life. It was with some trepidation we booked 2 nights on a late deal reduced price lodge in early May, and took the mattress and raiser. I slept in the single bed with the blue mattress on top and the raiser underneath at my usual 45 degrees, and with a flattish pillow under my knees whilst my husband had the glory of stretching out in the king size bed! Fortunately having the van means we can take lots of stuff, including a Porta Potti which we keep in the van on a raised platform. Now we can go for the odd day out too without worrying about the loo. Just parking up in the forest or on a clifftop costs little but is a break from indoors.
Just doing that has also made my husband's life happier and more interesting. Seeing different things and meeting people has helped him join the real world too. I hadn't realised how much he is constrained by my condition, it hasn't been fair for him either.
I have come to terms with this is the best I am going to be healthwise, (although I now have to wear a cpap mask and need a total hip replacement too), so it is also up to me to do as much as I can to make both of our lives that little bit easier mentally and physically. At the very least it is a distraction from the pain.
I think my recliner made it worse as I used the lumber and neck positions as I laid back and raised my legs. I thought I was making myself more comfortable but on this occasion it gently pushed the vertabra into different positions as I felt relaxed. When I tried to sit up, some collapsed and when I used the dual motor which helps you stand, so some more went and I just fell back into the chair and was unable to move without the paramedics help with gas, increasing morphine and intravenous paracetamol.
This was my experience and does not mean it could or will happen to anyone else. I don't sit in the chair anymore, I have taken a real dislike to it!
Yes, I know what you mean. I put my own small cushion on the lumbar which isnt much when I lay down, different cushion when I sit up. I put a small feather pillow behind my neck to get the head position right. The car we have just bought has lots of lumbar changes etc. and I hate it, I preferred the older one with flat seat and back where I could put my own lumbar roll in and sit up straight.
Feel your pain,I am in same boat,66. I gave up on bed,hospital ones so uncomfy & worst prob was getting out of bed,having to turn,twist.I can’t lie flat atall with kyphosis so live,sleep on recliner sofa.Just press a button on side and it puts you into sit position,brace back of legs against it to stand up .Can not stand,walk more than few mins re pain from multiple vertebral # s & need to be independent as ‘husband’ cheating,I’m divorcing him & he will go when suits him.I refuse to go into care home ever!I have Fentanyl patch 12 mcg which damps down worst pain,top up with Tramadol occ.
Doc recently gave me baclofen for spasms,one 2 hours before & can now manage shower myself,bliss,they don’t last long though so have to do things bit by bit eg getting food takes many trips to kitchen but I manage.
Had to get different doc to finally get barely adequate pain meds,take as little as poss. Doubt I could use car now,not worth risk of further pain/ #s,housebound for years but coping much better now,stronger phys & mentally.
Hope you get help you need.Start with GP,I write as it’s easier to get through!
fraid, I am so sorry for your lack of support from your husband just when you need it most. You are very strong to have managed to get on without his help. I hope you get lots of help from other people. I have just spoken to dr and it seems primary drs here cant perscribe a lot of things, so have to get from consultant or hospital. I mentioned several muscle relaxants to doctor and they were all in Australia, Spain etc. but not in this country it seems. I think Baclofen was the only one here. Do you write to your GP here in the UK rather than phone?I know what you mean, the new system now at mine is either 8 weeks for a routine phone appointment, or ring in the morning at 8 to try and get one that day which means hundreds of people are ringing at the same time, and we get no answer for 2 hours of continuously phoning.
Thanks.I presume you’re in Uk?Drs can certainly prescribe Fentanyl patches here! It helps the most,was on 50 mcg at one time but side effects too much so weaned myself down to lowest dose.I only use Baclofen before shower,3 x week,like today- whooppee! Try not use too many meds.Also hotbot on back when bad,have a brill heat vest,too hot this time of year,really relaxes muscles.
Hi Comic, So sorry to read a life story that is so similar to that of my dear wife. ( 66 with at least 14 spontaneous fractures, mostly in her spine) May we ask have you applied for Personal Independence payment ( PIP ) ?
I'm so sorry to read you are having more problems with pain and fractures.
So glad to see people from the site have come up with ideas, things depend on where in the UK you live. Every local authority has to provide a level of care, they are in change of the areas local budget, so it can end up as bad luck if they haven’t funded ‘enough’ in any one section; most local authorities don’t have enough money in the adult care section!!
Where you find information out is a bit of a lottery – Could be your GP surgery has a list of such services or it could be Adult Social Care (Social Services) BUT in order to get help with daily living you need help from an Occupational Therapist (OT) to help you assess your needs, if this is not though health in your area then it will be though Social Care. In my area the GP does the referral for the OT and I went to a centre to talk to an OT and be shown equipment it was like a house with different equpment in each room. I went to a centre and tried things out such as a wheelie walker (with a bag to carry things) I didn’t get on with this, but the Smart Crutches did give enough support to walk again. Some things like bath aids and a perching stool I was then sent to the local Red Cross centre I hired them first then bought the suitable ones for a suggested donation. Other things like you, I had to buy e.g. Smart Crutches. Also like you, have some money saved I am of working age but because of the rebound fractures no longer able to work so have to be careful about spending money and what I buy and even without VAT things are not cheap!
It may be the best way to find out about what is available locally is at your Citizen Advice citizensadvice.org.uk - I had a one to one appointment and was given advice on getting on to utility companies vulnerable list, best way to get a Blue Badge locally, what was available from the Council (little things like help to put the bins in / out) and was offered advice on finance (in my case what I could apply for as I couldn’t work)
Re pain – couldn’t do anything until I got that more under control, good luck on getting that sorted – worth going back to GP / hospital until you get something sorted otherwise you just cannot think! OS Consultant sorted out pain management medication that worked for me, Butec patches (Buprenorphine), as no oral medication suited me. I was referred to the Pain Clinic but by then I had worked on positive thinking and learned how to help myself relax etc. and the medication offered just didn’t work so continued with the patches. A Tens machine helped with the pain especially car rides as did an electric heat pad for the back. Still use the heat pad every night.
Hope you are able to sort something out soon if you can get some sleep and a bit of pain relief it makes it so much easier to cope with ‘everything else’.
That’s terrible that there is no support through Aged Care like we have in Australia. Maybe there is something similar to help you stay in your own home. I see that Bluebell has help for you. All the best, hope you get the help you need.
Don’t dispair. You are young. I am 88 with osteoporosis.very painful back. Had 2 fractures in femurs a year apart. Like you I have a stair lift, wheel chair for outings ( daughter pushing)Hand grips all over the house , 2 rolaters (1 indoors and 1 in garden? Sorry about your pain. Keep smiling.
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