Osteoarthritis in both knees

sireniff80

Hello everyone,

I am brand new to this forum so wanted to say hello and ask for a bit of advice. I am 39 and have OA in both my knees. It has been ongoing since I was in my late 20's. I had a double arthroscopy in 2011 I was told by the surgeon I need a partial knee replacement in both but he won't do it as I am too young, so since then I have had a couple of cortisone injections and physio but nothing else.
I have been back to the docs a couple of times but always seem to get fobbed off.
I am in pain constantly. I get pains down my legs at night and walking is agony, I can't kneel or crouch,I can't cross my legs and if I knock or jar either knee it is excruciating. It really is affecting my life. I have two young children and a full time job and I am struggling.
A couple of weeks ago I slipped off the bottom stair and jarred my knee and fell to the ground in agony. I really thought I had done some serious damage so the following day I went to A&E who did an x-ray. Thankfully it was only a sprain but the Nurse Practitioner compared the x-ray to my previous one about 4 years ago she said there was some changes and it was no surprise I was in so much pain and she wanted me to see the orthopedic team and sent off a referral. I was pleased as I thought that maybe someone will finally be able to help me.
So yesterday was my appointment, it lasted about 5 mins, he looked at my x-ray, said it is bone on bone and there is some small changes from last time. He had a quick feel and moved my knees up and down. He won't do a replacement as I am too young and I need to explore other options. I was gutted, honestly cried all the way home. He told me to go back to my GP and get some pain relief.
When I read about other people's stories they seem to have been given grade of OA and have had scans etc. I have only ever had x-rays, should I requested an MRI? Would they be able to see more that they could do to help me?
I have made an appointment at the GP to ask for painkillers, what should I expect to be given? Is there anything that I should ask for?
I know there is no cure and that I am going to have to live with this but I is there something that could be done to try and relieve the pain?
Thanks for reading and any help or advice that you may have.

[Deleted User]

Hello Sireniff80 and welcome to the forums from the moderation team.

I am very sorry to hear about your diagnosis of severe Arthritis in your knees. You have absolutely come to the right place for support and advice.

Yesterday’s Orthopaedic appointment has clearly upset you considerably. You had hoped for surgery and the Consultant has said it won’t happen due to your age. While it is true knee replacements don’t last forever each case is different. There are people on here who have had joint replacement surgery even in their teens because it was necessary and unavoidable. You said you were to look at alternatives and discuss pain relief with your GP?

This link has lots of information and Knee surgery as well as a section detailing alternatives:

https://www.versusarthritis.org/about-arthritis/treatments/surgery/knee-replacement-surgery/

The community here will have lots of advice for you to deal with pain, but in the meantime I attach a link which should be useful:

https://www.arthritisresearchuk.org/arthritis-information/daily-life/pain-and-arthritis/pain-and-arthritis/pain-relief-for-arthritis-joint-and-muscle-pain.aspx

Personal advice from me would be to try to see your GP with someone with you for support - this can help you avoid getting 'fobbed off'. Please do let us know how you get on.

Best wishes

Ellen.

dreamdaisy

Hello, I too have OA in both knees, elsewhere too, and another kind of arthritis in other joints. It's very disappointing that your age is working against you and it shouldn't be that way, but there is a good reason for it. If new joints are looked after then they can last for far longer than ten years but, when they need to be replaced (which they will), more original bone has to be taken to fit the new joint and so on. My cousin's wife had her first ones aged 18 due to bone cancer, she is now in her early fifties and facing life without a knee as she has abused her replacements with obesity and run out of bone for a fourth replacement.

Pain relief is limited in what it achieves, it merely dulls the sharper outer edges but that can be enough to let us get on. A little and often is better than letting things build and then trying to deal with it. Distraction is a very good way to minimise how you perceive the pain, keep your focus on things other than the hurt, rest as much as you can, delegate as much as you can, follow the arthritis ABC: adapt, believe, compromise etc. (I'm in my 23rd year and made this up.)

Adapt: change how you do things, eg vegetables do not have to be peeled standing up, ironing neither.

Believe: if may take longer to do things but you can still do them, don't give up.

Compromise: stop when you think you can do more. Prepare for important events by reducing activity in the days beforehand.

Delegate: eg get others to kneel, I've been doing that since 1997.

Exercise: the right kind is essential to keep the muscles surrounding the joints as strong and flexible as possible to better support the joints.

Food:. eat a sensible, healthy diet.

And there I run out! DD

stickywicket

I applaud you for managing to hold down a full time job with very creaky knees and two – presumably – not at all creaky children.. The latter are hard work, both physically and mentally, at the best of times. I had RA at 15 and the OA rocked up some years later. My knees were replaced when I was 35. It helped a lot but I still couldn't manage gainful employment as all my other joints were affected too. I looked after my knee replacements. I'd not much option as I was never going to manage free fall parachuting or even hiking But I did my exercises regularly and one of them was finally replaced 27 years later. The other I still have. It is now 38, 'totally knackered' (my surgeon's official verdict) and way out of position. It's painful and very difficult to walk on but, because of the arthritis in my neck, I'm a nightmare to anaesthetise so my surgeon doesn't want to operate as long as he has an option.

I'm saying this just to show that new knees are not a complete panacea. I regret nothing. I needed them when my kids were young but mine lasted much longer than those of anyone I know of, a second replacement carries ongoing risks of infection and one can, as I have done, come to the end of the road.

My OA was never graded. I think, though I'm by no means sure, that MRI's are used more to determine whether damage is RA rather than OA. You have bone on bone so you certainly have OA but – and this is very sad – we have several people on here with bone on bone. It doesn't seem to make any difference. Age and weight seem to be the key factors.

This must all seem very depressing. The GP can not do much but there are things we can do for ourselves. Rest is important but so is exercise. I don't mean just walking but exercising all the muscles which support the joints. A referral to a physio might help as can swimming and – for the knees – cycling. That apart, it's mostly anti-inflammatories (with a stomach-protecting med) and pain relief.

Try here https://www.arthritisresearchuk.org/arthritis-information/arthritis-today-magazine/156-spring-2012/osteoarthritis.aspx . It might help.

GraceB

Hi,

I've got osteoarthritis in both knees plus in a multitude of other joints. Both of my knees have been replaced. The right one was done when I was 44 and has a partial replacement prosthesis in there. My left was a total replacement done in January 2017 when I was 52.

Having a knee replacement is a major surgery. It's brutal and it hurts afterwards. Some work better than others. My right (partial) knee bends well - my left (the total replacement) doesn't. However, I can't face having it done again so I've accepted the limited range of motion it's left me with.

It can take up to 18 months to fully recover from a knee replacement although these days you are only in hospital for 3-4 days depending where you live. From what I was told each time, the progress you've made by the time you are 18 months post-op is the maximum progress you'll make. Depending on your job you could be off work anything from 6-12 weeks. I work in an office and went back to my 19-hour a week job on a phased return; the first week I did 12 hours as that was all I could manage.

When I need my replacements doing again both will be bigger ops. However, when I had my right knee partially replaced at age 44 it was the last resort for me as literally everything else had been tried. It was the same scenario for my left knee and the kneecap in that knee had to be replaced as well, which is unusual.

I don't regret having either knee replaced - both were necessary. Other joints will also need surgical attention in the future, but I'm trying to keep them moving for as long as I can.

You've had some wonderful advice from the others on here, but if I can do anything else to help please just let me know.

Take care,
GraceB

Jobey68

Hi I’m new to the forum and also have Osteoarthritis in both knees, moderate in left and advanced in right. I am bounced back and forth between hospital and drs! I’m 51 and have had on going problems for the past 4 years.
I pushed for an MRI when X-ray showed only mild disease, MRI shows a much different story which I knew was the case due to the pain and difficulty moving about I have!

It is a constant battle to try and get some relief from the pain and stiffness, it affects every aspect of my life and I struggle to keep on top of it most days now, back to the hospital again next week to see where we go from here 🤷🏼‍♀️

Jo xx

Airwave!

I'm 64 and still too young! It may well go against the grain at present, but exercise will help, I use an electric bike for non-weight bearing exercise, plus swimming etc. The muscles, tendons and ligaments that support our joints will all benefit along with the rest of your body and more especially your mind. The looser your joints the more pain and uneven wear. Scar tissue may develop on the synovial membrane and go some way to ease the joints. Now is the time to develop long term action plans.

The state of our minds must be used to protect ourselves, find positive thoughts and actions that fill our thoughts and remember in those dark and negative thoughts, they are just that, a thought, and can be changed.

Lastly, pain killers are for short term use and will not provide long term relief. The time span before our bodies get used to them is very short, in some cases a week and a half. Your GP cannot offer more than he has in his armoury and does not have a magic bullet to use, X-Ray's will show the same as an expensive MRI scan (just prettier colours!).

This subject can be expanded on a lot but arther is different for all of us and so must be treated differently but the basics are written above. To some things you must learn to say 'No!'.

I should add that we all feel pain differently and often the correlation between wear and pain will not match. Our bodies will grown extra pain sensing pathways and send our brains false messages, often just like amputees get. I get feelings of heat and numbness caused by this for instance.

Good luck.

stickywicket

I would endorse all that Airwave has written. I've had RA and OA for most of my life and firmly believe that exercise and distraction are the things which make a real difference. The docs can only prescribe pills which have limited help and we easily become tolerant of so-called 'pankillers'. Cycling and swimming are good exercises for knees.

Hannahis40

sireniff80 wrote:

Hello everyone,

I am brand new to this forum so wanted to say hello and ask for a bit of advice. I am 39 and have OA in both my knees. It has been ongoing since I was in my late 20's. I had a double arthroscopy in 2011 I was told by the surgeon I need a partial knee replacement in both but he won't do it as I am too young, so since then I have had a couple of cortisone injections and physio but nothing else.
I have been back to the docs a couple of times but always seem to get fobbed off.
I am in pain constantly. I get pains down my legs at night and walking is agony, I can't kneel or crouch,I can't cross my legs and if I knock or jar either knee it is excruciating. It really is affecting my life. I have two young children and a full time job and I am struggling.
A couple of weeks ago I slipped off the bottom stair and jarred my knee and fell to the ground in agony. I really thought I had done some serious damage so the following day I went to A&E who did an x-ray. Thankfully it was only a sprain but the Nurse Practitioner compared the x-ray to my previous one about 4 years ago she said there was some changes and it was no surprise I was in so much pain and she wanted me to see the orthopedic team and sent off a referral. I was pleased as I thought that maybe someone will finally be able to help me.
So yesterday was my appointment, it lasted about 5 mins, he looked at my x-ray, said it is bone on bone and there is some small changes from last time. He had a quick feel and moved my knees up and down. He won't do a replacement as I am too young and I need to explore other options. I was gutted, honestly cried all the way home. He told me to go back to my GP and get some pain relief.
When I read about other people's stories they seem to have been given grade of OA and have had scans etc. I have only ever had x-rays, should I requested an MRI? Would they be able to see more that they could do to help me?
I have made an appointment at the GP to ask for painkillers, what should I expect to be given? Is there anything that I should ask for?
I know there is no cure and that I am going to have to live with this but I is there something that could be done to try and relieve the pain?
Thanks for reading and any help or advice that you may have.

Hi,
Sorry to hear your in so much pain, I’m 41 and I had my first knee replacement last October, surgeons in my local hospital had been telling me I was too young since I was 30 but at 40 I’d had enough, I was on a bupranorphene patch and in constant pain, I got referred to a London hospital and was put straight onto the waiting list, I will need to other leg done some point but I don’t regret this at all, no pain killers 🥳🎉🥳
I would say nag and bitch and moan at your dr constantly, ask for a pain management referral and don’t be frightened to tell them what you want!
Xx

remmingtonwildhunter

I had my right knee replace in 2014 at48 7 years of flushing joint out bone on bone after mcl and acl reconstruction i was told two young i had the genesis two joint done at RNOH by Xxxxxx great surgeon 6 weeks post opp riding my bike 8 weeks post opp 137 degrees bend...
2017 left knee replaced same replacement same surgeon same hospital12 weeks post opp 135 degrees bend...
They told me at 48 two young get a second referal to rnoh keep badgering them i can kneel butnhave to get up like a baby hope you get it sorted...

edited this post as a surgeon's name was mentioned.
ChrisK moderator.