New - and moaning!!

lynne888

Hello everyone. I'm new here and like a number of others I guess it is pain that brought me here! I have read some posts and I hope you don't mind me explaining my problems - apologies now as it may be a bit long winded. Basically I have been in unspeakable pain. Just to fill you in on some background information, I was diagnosed with severe bone on bone arthritis 5 years ago in my right leg. I've managed it well. I wore a brace and whilst I went from walking 5 - 7 miles a day to 2 or 3, I was still active and didn't need a stick. I had bad days yes but mainly it was manageable. All of this changed about 6 months ago but not with my bad knee, with my good one. It had been a little bit painful from time to time before but just nothing in comparison until I got up one morning to loud cracking when I walked. Not painful but unpleasant! This quickly escalated into pain. It went from pain, to not being able to sleep well. This changed again about 3 weeks ago when the pain got more intense and was so awful at night I could barely stay asleep more than half an hour. This has continued. I have slathered the knee with every cream available and have been taking ibruprofen regularly. Some nights it is slightly more bearable, but if I have done a bit more activity in the day, it is shout out agony! Went to see my GP yesterday. It is a new GP this past 2 years and I have not mentioned my knee problem before. Explained the situation and she said to take 6 - 8 paracetamol a day, even if I was not in pain, she said it would build up a resistance, and she said to do more activity if possible. She also gave me codeine for the nights when the pain is unbearable. She said that they try to put off an operation as long as possible which, to be honest, I'd prefer not to have but with the pain recently, if someone had sawn it off in the night I don't think I would have noticed the difference!!
I did a bit more activity yesterday, not much, but we are moving house so lots needs doing. Took paracetamol all day, slathered on voltarol last night.. went to bed and had the worst night yet. It's the most miserable situation. I end up having to get up and generally stay up for 2 - 3 hours until I am so tired I can't stand it any longer. Lat night I DID take the codeine but I felt dreadfully sick afterwards which, even if my knee hadn't been so bad would have kept me awake on it's own!!! I'm not sure my GP understand just how far the OA has gone and maybe as I haven't mentioned it before thinks that it's in it's early stages. I have to say though, the *good* knee pain is far worse and very different to the slow progression of my *bad knee*. I can't even wear a brace on the *good* knee as the pain is worse :? ANY help or advice would be greatly appreciated. Please share anything that has helped any of you get a better nights sleep or helped with the pain. Sorry my first post is so involved!! Thank you!

stickywicket

Hello Lynne and welcome thouigh, as we say round here, sorry you had to join us. By the sounds of it you have OA diagnosed by x-ray. It also sounds as if you've dealt with it well up to now but that things are now getting trickier as knee number two joins the party. It might well be OA in that knee too but sometimes it can be 'referred pain' ie in walking, you're 'sparing' your bad knee and so walking awkwardly on the other.

It's never a good idea to assume that GPs have all our notes and remember – or have in front of them on the computer – all our past history. They don't. We have to keep reminding them. Yours is possibly blissfully unaware of the history of your 'bad' knee. Prescribing regular paracetamol is one way to try to get on top of persistent pain but there are others. Maybe you should go back, explain the history, ask if you could have more x-rays to determine the state of both knees and maybe some physio. Anti-inflammatories will probably help more than paracetamol but a stomach-protecting med is usually needed with them. Did you take the codeine on an empty stomach? If so, having a biscuit or piece of fruit with it might help to avoid the sickness.

The other thing that comes over in your post is you seem to be trying to do all the things you've done before and make the OA fit in with that. It's worth a try but I think you'll have to make concessions. It does its own thing and will bite back if you annoy it.

dreamdaisy

Hello, welcome to the wonderful world of ongoing, grinding and unrelenting pain. I'm in my seventeenth year of this (I am 54) and often wish I could return to the halcyon days of just one upset joint. Sticky is quite right, when one joint is affected it throws others out of kilter which leads to further joint distress. I have two sorts of arthritis including OA in both knees, both ankles and my right hip (listed in the order of appearance). I am now reliant on a rollator for longer walks, two crutches for shorter ones.

I also agree that you are also trying to do too much - your life has changed, is changing and will not go back to how it used to be until you get new joints - and even then not fully but it will be better. I have another year to go before the NHS will consider me - my knees are bad enough but I am not the right age. I take co-codamol for pain relief, that is codeine and paracetamol combined so this could be a better option for you. 6 - 8 paracetamol per day is not ideal (paracetamol is tough on the liver) so it is worth discussing other options with the GP. Sticky has already made the suggestions so I won't repeat them. GPs understand the theory, we're the poor saps who live with the reality. Good luck and please let us know how you get on. DD

Megrose489

Hi Lynne,

I can't really add anything to what Stickywicket has posted - I found it very informative for me, too, thank you Sticky - but just wanted to offer some support. I've got OA in both knees too, plus hands, feet and, lately, a painful hip, so I sympathise, although my pain is manageable at the moment, thank goodness. Yes, I agree with Sticky that you should go back to your GP and state your case. I know when I visit my GP I always say "You remember when I last saw you I had..." and he looks at me blankly. I've taken to writing everything down and giving him the printed out symptoms, which we then go through together. He seems to like it and it means that I have had time to think things through. He then adds my notes to my records.

Sticky mentioned the mistake of trying to do everything and I would agree with that, too. You're probably younger than me - I'm 67 - but the last time I saw my GP, he gently reminded me of this, as I do tend to go at things like a bull at a gate and then feel exhausted and in pain afterwards.

Hope your GP is able to help you further. Look after yourself.

Meg

lynne888

Hello and thanks for your replies! As usual, in my bid to explain the pain I am enduring, I have failed to give a full picture! My GP is sending me for an xray on both knees so that will at least give her a better idea of what's going on. I did explain everything to her yesterday. I explained that I have suffered for around 5 years with my *bad* knee.. I guess the thing I didn't feel I got across well was just how severe everything had become. Far from carrying on as I was 5 years ago, my life has changed dramatically. I used to walk the dog several miles a day. That has reduced to a 10 minute walk in the morning and a 20 minute walk in the afternoon. This can be trying. Yesterday for instance, I just don't know how I got back, every step was a milestone. I now sit in the car when my husband takes the dog for a bigger walk. I find this tough as we have walked our different dogs together for 30 years!! We live on National Trust land and the walks are gorgeous. I no longer walk down to the pools as the steep slopes have scuppered everything. Walking down hill as you will all no doubt be fully aware is far worse. I just cannot do it, even with a stick, anymore. I am really hoping that the *good* knee might just be something different that has flared up but I am doubting it I have an issue with most tablets, it's all a nightmare, I tend to get side effects from everything, my whole family are the same. Have to have 3 x the normal stuff at the dentist for it to even begin to work.. so I'm not surprised to find that codeine made me feel ill. I'd never attempt to take anything on an empty stomach. I'm 55 by the way. I used to do a lot of athletics when I was younger and I have felt creaks and cracking since I was in my 20's. It will be impossible to carry on with this severe pain so I am hoping it WILL settle down, but far from the exercise making things better, it definitely makes is a hundred times worse at the moment.

chookgate

Hi Lynne

You don't mention your age, but your situation sounds similar to how mine was (I'm 53 now), although you sound fitter than I was. My left knee started troubling me first, with OA diagnosed via x-ray, and it gradually got worse over a few years, got a referral to an osteologist who sent me for an mri, then did an arthroscopy - he said he trimmed bone growths and removed "gunk". The knee was a lot better, but still stiff and painful afterwards, and curtailed activity, though I still cycled regularly. Then nearly 3 years later, with the knee still getting gradually worse, the right knee started playing up. Pretty soon, the "good knee" had become the worst knee! Anyway, long story short it got so bad I couldn't walk far without a stick (and not that far with it!) and the GP said I was too young for a knee replacement, but that was what I needed. I persisted with the pain and lack of mobility for a few months, had physio, and I couldn't stand long enough even to have a shower (had to get a stool), then my dear hubby said "enough's enough, you'll be in a wheelchair soon" and dragged me to the local private clinic - I was in the fortunate (if that's the right word) position of having recently inherited from both my and my husband's parents so had the money. 4 months later I had a TKR (for the previously good knee) and 3 months after that (nearly a year ago) I had a TKR on the other knee. I now feel so much pleasure just from being able to get out of my chair unaided and stand (and walk and cycle) pain free.

So, as I said, I don't know how old you are, but the NHS will try to put off knee replacement surgery until you are 55 (I think), but by then you could be in a wheelchair, out of work, struggling with ATOS assessments, and trying to scrape by on benefits that they'll probably say you don't deserve, and it is all so unnecessary if they'd just treat you when you needed it. If your knees had been wrecked in an accident instead of "just" arthritis, they'd have fixed you.

I can understand you holding surgery as a last resort, it is scary, and the idea of having a bit of you cut out and replaced with a lump of metal and plastic is hard to come to terms with. But, IMHO once the knee gets so bad it isn't bending and straightening properly, and pain meds really aren't touching it, then TKR is the only resort, not the last one.

Anyway, good luck, go back to the GP, make him/her understand the painkillers you've been given aren't doing anything and get help.

Oh, and get ice packs, ice your knees for 20 minutes in the morning before you get up (if you can get someone to bring them to you !) and again 2 - 3 times a day if you can. Icing really helps a lot.

lynne888

Hi chookgate

I'm 55.. when I was diagnosed my GP said they would want to wait until I was older but he didn't say how much older. Although I am afraid of the op, the pain is now so bad that I would welcome it. I had a better night, I woke up several times but not in the searing pain I was in, but as most of you no doubt know, that can change from night to night! I carry a bit of weight and that probably isn't helping but as I mentioned before, when I was doing athletics, I had knee problems then and I was was thin. My GP says I can't make my knees any worse with exercise but if I do what I consider too much one day, I definitely pay for it for days afterwards. In fact, this whole episode started when my husband had a small op about a month ago and couldn't drive (I don't drive). We walked to the local farm shop about 2 miles away. It wasn't the 2 miles so much as the up and down hills that was bad. Going down hill was terrible and the inclines were steep. Needless to say, coming back I cried a few times thinking I would never get home!! After that, the pain was excruciating for a number of days so I'm not sure what they mean by exercise won't make the situation worse! I will see what happens when I have has the xrays done. It might throw up something. Thanks for your comments!

dreamdaisy

The idea behind the exercis is to keep the muscles that surround the affected joints as strong and supple as possible so they can better support the joint. Non-weight bearing ones are the better option, e.g. swimming or cycling, walking is a fairly high-impact activity on knees and ankles etc. Are you using any form of walking aid? Sticks or crutches do help to ease the strain on the affected parts - I have perfected my quadruped walking style but walk better and faster when using the rollator. DD

lynne888

I do use a stick when I'm walking.. I find it helps sometimes, but I tend to lean on it and I have caused a problem with my hip a few times!!!! Nothing is straight forward is it!?

I found with my *bad* knee that a good quality brace really helped. I have tried it with my *good* knee and have found it makes the pain far worse. This is what made me think it must be something else, but all the cracking, creaking, popping and pain tells me it must be arthritis!

stickywicket

Definitely don't lean on a stick, Lynne. It could cause as many difficulties as it solves. Get fitted for one properly, either by an OT or a good disability aids shop. It might be that two sticks, one or two elbow crutches or a rollator (but still don't lean on it ) would suit you better. I think an OT assessment would be your best bet.

dachshund

Hello Lynne
it's nice to meet you i'm sorry you are in so much pain I hope you can get some help.
I have oa and osteoporosis and c palsy. I've had a thr tkr and a triple fusion on my foot.
what makes my day is taking my dog for a walk me on my mobility scoota
the dog sits on when he wants to rest he's 13 years.
take care
joan xx

Toots

Hi Lynne, I can't add anything useful, but wanted to welcome you x

barbara12

Hello and welcome lynne888
I am sorry you are suffering like this , you can understand them wanting you to hold off having the TKR, but we have had a couple of younger people on here that went for a replacement and are very pleased they did..I suppose pain is pain and its up to you for how long you can put up with it, like the others have said antiinflams will help and gentle exercise...I do hope you get some relief soon x