On the list for a knee replacement and it's getting worse every week while I wait. Is there anything I can actually do?

Some of you followed the partial or total saga. I'm on the surgeon's list, which is the good news. The bad news is the letter says the expected wait is "several months" and the knee seems to have read it, because it's gone downhill fast since August.

Six months ago I could do the supermarket and back. Now I'm leaning on the trolley by the second aisle. I'm awake two or three times a night, the stick has gone from occasional to always, and last week it buckled on the kerb outside the paper shop and I went down on one hand. Nothing broken except my pride, but it frightened me.

So two questions. Is there anything that genuinely helps in the meantime or is it just paracetamol and patience? And is there any point telling anyone it's got worse, or does everyone on that list have a bad knee and I just join the queue like everyone else? I don't want to be the bloke ringing up moaning.

Ring them, Brian. The fall alone is worth a call. You're not moaning, you're updating them, and a knee that's started dumping you on pavements is a different knee from the one they put on the list.

I'll add the GP to that. When mine went downhill on the waiting list a few years back for my right one (eventually decided against it for then, long story) I went back and the GP did three useful things in one appointment: changed my pain relief, referred me to the physio again, and wrote to the hospital with the specifics. Not "it's worse", but distances, nights, falls. Whether it moved me up I'll never know but the physio alone made the wait bearable.

Write it down before you go. You'll forget half of it in the room otherwise. I always do.

First post, been reading for weeks. I'm on a waiting list too, left knee, referred in June, and I'm in almost exactly your position, Brian, minus the fall so far. I'd sort of assumed that since they're replacing it anyway there was no point doing the exercises the physio gave me last year. Is that wrong? I keep reading opposite things.

Hilary M said:

since they're replacing it anyway there was no point doing the exercises

Hilary, that's exactly what I told myself, word for word, and it's the decision I regret most out of my whole knee story. I stopped everything once I was on the list. By the day of the operation my thigh muscles had gone soft and it showed on the ward: getting out of bed, standing up from the chair, those first walks with the frame were all harder than they needed to be. The knee is replaced. The muscles aren't, and they're the ones doing all the work afterwards. Versus Arthritis say it plainly, the stronger those muscles are before surgery, the quicker your recovery is likely to be.

So yes, keep going, at whatever level the knee will take on a bad week. Straight leg raises and sit to stands from a firm chair can be done even when walking is miserable, and they're the ones that pay off most after the op. The guide on knee replacement exercises covers the pre op ones and how much discomfort is fine, and the preparing for surgery one has everything else worth sorting during the wait, from the dental check to the chair height at home.

Brian, Maureen and Pete have it right. Tell your GP and the hospital, with specifics: how far you can walk now, how many nights you're woken, the fall. That's clinical information, not moaning, and they can't act on a change nobody's told them about. I sat quietly on my list because I didn't want to be a nuisance and I'd do it differently now. What they decide to do with it is up to them, and that's their call to make, not ours, but it should be made with the right information.

Update, because this thread got me off my backside. Wrote it all down like Pete said. GP had a look, changed my pain relief, and sent a letter to the hospital with the fall and the night waking in it. Physio referral came through quicker than I expected and I'm two sessions in. Also found the waiting time checker website the GP mentioned, which at least tells me roughly where I stand rather than "several months".

No new date yet, but the hospital rang to do a phone review, which they hadn't done before. Sleeping slightly better. Still on the stick but no more kerb incidents, partly because the physio made me admit I'd stopped picking my foot up properly.

Nowhere near the list myself but saving this one for when I am. The muscles not being replaced line is going on the fridge next to the walk rule.