Advice and help please

Debbiek Member Posts: 4
edited 28. Feb 2018, 14:09 in Living with Arthritis archive
I was told Thursday that i have severe arthritis in my left knee, which did come as a shock but its there so i have to learn to get over it.

How ever after what i can only call the nights sleep from hell with the pain, i got into my gp this morning, how much do i wish a had not bothered and just got on with it.

First he tried to refuse to give me any meds to help at all, cause of all the side effects and maybe getting hooked on them, after what can only be described as me nearly breaking down in tears with it all, hes gave me something but only for two months.

The consultant has mentioned a knee replacement when i get my bmi down which is fine, yet today my GP said no, as i'm too young and they only last 10 years, but i cant see any way round this as i am back under the care of the gp till i loose my weight.

The last blow came from a note on my file saying i had refused to see a physio, i have been going since december.

Really dont know what to do or where to turn now,


  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hello DebbieK and welcome to the forums from the moderation team.

    I am very sorry to hear about your diagnosis of severe Arthritis in your knee. It sounds to have been quite a shock diagnosis to you, but you have absolutely come to the right place for support and advice.

    You say you need to get your BMI down before the consultant will consider surgery. There are quite a few members on here who have been able to lose weight despite having arthritis.

    Today’s GP appointment has clearly upset you considerably. You had hoped for surgery after you lost weight and your GP 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 in their teens because it was necessary.

    I can quite understand your frustration with regards to pain relief; some GPs are cautious about giving strong painkillers out. That upsetting note on your file saying you had refused physiotherapy needs to be corrected I hope you have asked for this to be done.

    The community here will have lots of advice for you to deal with pain, but in the meantime I attach two links for you to read which might help. Apologies if you already know any of the information therein.

    Arthritis Care’s information about Osteoarthritis:

    We have a great community here, who have lots of experience of arthritis, I know they will make you very welcome and help in any way they can so do ask away!

    I look forward to seeing you posting in future.

    Best wishes

  • stickywicket
    stickywicket Member Posts: 27,429
    edited 30. Nov -1, 00:00
    :o Crikey! You have two problems and I'm not sure which is worse – the arthritis or the GP. I'm afraid you're stuck with the arthritis but GPs can be changed very easily. Either see a different one at the surgery (You don't have to see the one officially in charge of you) or just go to a different practice and tell them you want to join. They will do the paperwork. But, like Mod Ellen, I suggest you get that note about physio changed first. It can easily be verified that you're attending physio and it should be.

    I can – sort of – see where your GP is coming from. I was very surprised when I read your first post on 'Say Hello' and saw you'd been diagnosed and told you needed a TKR all in one go. It can happen like that but very rarely. Usually there's a long wait. Especially for the 'young' or overweight. I got my first TKRs when I was 35 but I'd had RA for 20 years by then and, in my knees at least, OA had resulted and done its worst. It's not true that they only last 10 years or so. They are much better now than they used to be but how long they last will depend on what the patient does with them. Due to RA in all my other joints mine have had one careful owner :wink: but one had to be replaced a few years back. That's a longer operation and a much longer implant.

    So, they do try to make people wait until they themselves have approximately not much more life expectation than the new knee. Which might be why your GP is reluctant to give you strong medication. However, most people with OA will be taking anti-inflammatory meds and possibly pain relief too. Not to mention the occasional steroid jab.

    I don't suppose you got a copy of the consultant's report? You are entitled to one but I don't know how to get one retrospectively. Usually one would ask in advance. Some just send them to us anyway.

    As Ellen says, we have had quite a few slimming successes on here even, in one case, from a wheelchair. So don't be discouraged. But definitely see a different GP. One essential thing for anyone with a chronic disease is a good relationship with their GP.
  • Helenbothknees
    Helenbothknees Member Posts: 487
    edited 30. Nov -1, 00:00
    My GP said my knees weren't bad enough for a knee replacement. I went to see another one in the same practice two weeks later; she asked how far I could walk, and instantly suggested knee replacements! I got on what was supposed to be a five month waiting list, there was a cancellation and I got both mine done very soon afterwards. So find another GP.
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Debbiek
    I dont think we have met so welcome to the forum..
    We always say on here that pain is pain whatever age, its understandable for your GP to say you are to young, apparently a second knee op can be much harder..and the meds like they say are very addictive , but you have to live with this pain and do need something to get you through..
    Maybe like SW says a new GP might be more help, I really do feel for you and hope you can get the help you need..
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    We are always at the mercy of the professional opinion but it's worth bearing in mind that GPs know a little about a lot, rather than a lot about a little. I have yet to meet a GP who has osteo arthritis or a rheumatologist who has an auto-immune kind, they have the luxury of dealing purely with theory whereas we have the grim reality (and in my case that is a dose of both). Yes, there is a risk of addiction with the stronger kinds of pain relief, and there is also the risk of that losing effectiveness as the body adjusts to its regular intake: pain is a fact of our lives, it will always be there regardless of the what we try to do to ease it. Pain is harder to manage when it's affecting only one or two areas.

    I am in my twenty-first year of this malarkey and was refused knees seven years ago when I was fifty two due to extreme youth and being a tubster: this despite I was bone-on-bone in both. Replacement joints can last for as long as we make them - take care of them and it can be twenty-plus years: revision is not easy surgery as more original leg bone is removed to fit the new. I wont' bother now, there's no point in my particular situation because, with around forty affected joints, there will be minimal gain and I am coping OK with stuff. I take four 30/500 cocodamol per day which dulls things sufficiently for me to get on but being used to constant pain does help: over the years I have learned that distraction is the best pain-management method for me in conjunction with the cocos. DD
  • stickywicket
    stickywicket Member Posts: 27,429
    edited 30. Nov -1, 00:00
    How are things going for you? Any better / worse?
  • osteonorm
    osteonorm Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi Debbiek. Have just joined so only just saw your message. Firstly, poor you! Bad enough being in pain, but unhelpful GP makes us feel so powerless at a time we are at our most vulnerable. First thing - consultants have to copy patients into the letter they send to our GPs, so might be a good idea to get onto consultant's secretary at the hospital. As for the inaccurate note on your records - sorry to say, it's not uncommon. I've lost count of the letters I've written to the hospital about inaccurate information they've sent to my GP in their letters. I'm always polite & understanding about how busy they are, & then ask them if they could please correct the misunderstanding in my notes/letter. Also, maybe your physiotherapist could write to your GP about your progress/struggles - just an idea. As for the lack of analgesia - this is not a broken leg that's going to heal, with the risk of you being left addicted to strong pain killers. This is a long term degenerative, painful condition that is going to affect your mobility, and it's unreasonable to expect you to just cope with the pain. You are probably doing muscle strengthening exercises with the physiotherapist and at home, to build strength to support the damaged joint, and that is going to add to the pain, especially early on in the exercise regime. You should at least be on anti-inflammatories (as our fellow sufferer said), and it helps if you take them about 20 - 30 minutes before doing the physio exercises. If all the GPs at the practice remain stubborn, you could ask for a referral to the pain clinic, and maybe point out that though you are trying your best, the pain is affecting your morale, & is going to prevent you from doing the exercises, and lead to you avoiding mobilising at all and going out. I have seen this happen to patients , and there is absolutely no excuse for not giving patients analgesia for pain in a joint that plays such a huge role in us going about our daily lives. I don't know what to think about our being told we're too young for the joint replacements. I'd rather have the new joint while I'm young enough to appreciate it, & get some use out of it, & whilst I'm young and fit enough to survive the longish anaesthetic - it's not as if I'm going to run marathons on it - not with OA in my back, hip, and toes. I do hope it all gets sorted out for you. All the best.
  • stickywicket
    stickywicket Member Posts: 27,429
    edited 30. Nov -1, 00:00
    The joint replacement thing is, admittedly, partly due to money but mainly due to the problems of lifespan of the replacement joints. I got my first TKRs when I was 36 after 20 years of RA and several of OA. Due to the arthritis in all my other joints, I'd no option but to treat them carefully. One has since been replaced. You write of the problems of long anaesthetics. This operarion is twice as long, my prosthesis now runs virtually down my full leg and required bone grafts. It also carries an ongoing risk of infection. This is why they prefer not to give a first TKR to younger patients because this is what will be needed further down the line. I don't regret mine at all. I believe I was lucky to have them. But I can see why they pose problems for both patients and the NHS.