Fed up and confused

TAH134 Member Posts: 7
edited 27. Jan 2016, 04:28 in Say Hello Archive
Good morning.
I have just come across your forum and would like to join in.
I am a 50 year old woman (soon to be 51!) in 2012 very suddenly I developed OA in my right knee. Overnight my knee locked and my life changed for ever. After being told on numerous occasions by the consultant that I was too young TKR he finally agreed in 2014. However unfortunately when I came back from surgery he informed me that I had PKR. Whilst disappointed it did help and my walking returned as near normal as could be expected. Unfortunately damage had been done to my left knee because I had been weight bearing on this for almost 2 years. Walking has steadily become worse. This knee is now also locked and painful. Also affecting my ankle.
On top of this since September I have had intermittent pain in every other joint, hands, feet, hips,jaw, shoulders, wrists etc. My GP sent me for further tests and last week I saw a Rhematologist and I am now waiting for results of X-rays and blood tests. They are testing for RA. I have been reappointed for 5 months!!!!
I am so low and worried for my future. I have been in touch today with my knee specialist to go back to see him about my knees but I feel that I am dealing with two separate issues with the possibility that one is causing the other due to bad posture etc.
I am on Naproxen and I take small doses of CoCodimol when necessary. I am afraid to take the full dose as I don't want to become to reliant on them and they hinder going to the loo!! This is obviously something I need to address.
I am very very hard on myself and I won't allow myself to give in to this but this in itself is hard. I worry that I am lazy when I sit down. I worry that sitting down will be making my problem worse but I worry that by pushing myself to hard I will be in pain. I feel as if I am in wheel going around and around. As you can guess I am a worrier and suffer with anxiety. I try to keep going as normal and most days I do manage to do so!
My family are not aware of how bad this has become and I am embarrassed that people will judge me and I will be seen to be giving in.
Everyone gives advice like lose weight, join a gym and everything will be ok. I am afraid to exercise as I have lost my confidence.
Yes I should lose weight -but it is hard ( I also have under active thyroid). I should say that I am now starting to see a physio but this scares the life out of me!!
I am sorry that this is a long post but once I started to write it seems to be just an outpouring!


  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums, TAH124, from the moderation team.

    We have some great members on here with a wide range of experiences of arthritis and living with the condition I am sure you will get lots of support from them. They are happy to read long posts so don't worry. It's good to know a little about a new member.

    As moderators we are here to help with any problems you may have using the message boards so feel free to send us a message if you need to.

    Please do join in wherever you like, you will be made very welcome.
    I look forward to seeing you posting on the boards.

    Best wishes

    Moderator AC
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Hello there. Just a quick reply as I have to go out. You have a lot to deal with all at once and as you say worry makes it all more difficult. You would probably find it useful to give the Helpline(number at the top of the page) a call as they are really good at listening and reassuring, and being able to voice your concerns to people who know what the issues are is often a relief. There are lots of wonderful folk on this forum who will be able to offer support as you shuffle down this bumpy road - and a laugh along the way. Check out Living with arthritis and ChitChat, and you'll see you're not alone.
  • TAH134
    TAH134 Member Posts: 7
    edited 30. Nov -1, 00:00
    Thank you daffy2. I will call the help line tomorrow. I just hope that the forum can help me realise that I am not alone.
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    Yes, it's an 'outpouring' of a lot of things that needed to be 'poured out' :) That is one of the main values of this forum. We understand. We can sympathise and empathise as we're all in the same creaky boat.

    Stress and worry will make any form of arthritis worse. I guess it's useless to tell anxious people not to worry so I won't. But I will try to give you some ways in which you can help yourself. I always find that being able to do something about a situation makes me feel better about it.

    You have seen a rheumatologist which is good. You will now get to know whether you simply (though it aint so simple :roll: ) have OA or whether you also have an autoimmune type of arthritis. I have both because, when I was diagnosed with my autoimmune, back in the early '60s, there were no 'proper' meds to hold it back so OA developed.

    I think it's good to try not to overdo painkilling (what a misnomer :lol: ) meds but, if you are shown to have an autoimmune arthritis, please do take the Disease Modifying Anti-Rheumatic Drugs (DMARDS) on offer. Yes, the leaflet of potential side-effects may scare you but they are only potential. The untreated disease is every bit as scary. As for the cocos causing constipation – eat lots of fruit (prunes are especially good), drink lots of water and, if necessary, take a gentle laxative.

    Do keep your appointment with your orthopaedic man. It doesn't matter whether or not two types of arthritis have arisen separately. He will, if necessary, liaise with your rheumatologist. Your job is to get as much info as you can.

    Anxiety is the enemy of arthritis and keeping things to ourselves will always cause more of it. You now have us to talk to but it would be better, and probably necessary, to talk also to your nearest and dearest. This doesn't have to take the form of a daily moan :wink: But they love you and want what's best for you and, as arthritis, in one form or another, affects everyone in a household, they also need to know and not be excluded.

    Pain is pain is pain. Exercises hurt but are vital for maintaining muscle strength. Strong muscles support joints and so make them hurt less and deteriorate more slowly. The gym sounds scary. Do the exercises prescribed by your physio though. They will be tailored to your needs. You should also check out Arthritis Care's info on 'Managing Arthritis'. (Blue/grey tab above). We need to exercise carefully and keep moving. Alas, all will not, then, be well :roll: – but it will be much better than if we don't :D

    Good luck and keep talking to us.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • TAH134
    TAH134 Member Posts: 7
    edited 30. Nov -1, 00:00
    It's all so complicated with lots of different outcomes that I can't help but get anxious. I try not to but it's just a vicious circle.
    My GP did initial blood tests but they can back as negative but as I had moving pain he referred me anyway. I am in 2 minds about RA as I do not have pain in hands when squeezed (by consultant) and my joints do not appear to be swollen or red. They just ache for a few days and then move on to another site. Very weird! My knees are constantly painful but I have accepted in a small way what is going on with them.
    I hope that they will consider another PKR in the left as I think that getting my body weight distributed correctly will take off the abnormal stress on my other joints. My corrected knee is now paying up as I am transferring more weight on to this. It is an never ending circle.
    Hopefully they will sort it out and get me back to some kind of normal!
    I do talk to my OT but he just thinks that the NHS are failing me by not giving me new knees!
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    It's true that in walking awkwardly to 'spare' one joint we then cause problems in others but I wonder why your other half “just thinks that the NHS are failing me by not giving me new knees!” when you say that “since September I have had intermittent pain in every other joint, hands, feet, hips,jaw, shoulders, wrists etc” Fixing knees would make little, if any, difference to the joints above them even though it probably would to those below.

    There are very many forms of autoimmune arthritis some of which don't give a positive result for the 'rheumatoid factor' so you may have to live with uncertainty for some time. As you say, it's complicated and there are no quick fixes.

    As daffy says, a chat with our Helpline people might be very useful to you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • TAH134
    TAH134 Member Posts: 7
    edited 30. Nov -1, 00:00
    I think that he feels that my knees are the priority as these are disabling and hindering my everyday life . My other pains are uncomfortable but as yet they do not stop me doing anything. On top of this my physio confirmed last week that my upper joint pains could be caused by my posture as my body is naturally trying to compensate for my non weight bearing side. Something I must consider apparently.
    Going back to start excerise plan on Thursday.
    Thank you for your feedback.
  • frogmorton
    frogmorton Member Posts: 29,204
    edited 30. Nov -1, 00:00
    Hello TAH134

    Lovely to meet you and welcome you to our forums :)

    Please do come along in and join us. Chatting to us lot can be a useful distraction I can vouch for it :)

    I think I am pretty well undiagnosed too and have been for YEARS!! Inflammatory arthritis for definite and my bloods are also negative (or still were last time tested...years ago???) :roll: .

    Take care now


    Toni xxx
  • slomo
    slomo Member Posts: 180
    edited 30. Nov -1, 00:00
    Hi there, just a quick post just now - OH is making the evening meal and its nearly ready.
    Just passing on something my practice nurse said to me when I was on naproxen and sometimes took cocodamol. If you take one cocodamol and one paracetamol you get the equivalent dose of paracetamol as you would from two cocodamol but only half the codeine which is the troublemaker re going to the loo. Might be worth giving it a try
    I'm now on steroids for RA and Large Vessel Vasculitis and doing a phased return plan at work as I was off sick from October till the new year.
    Must go now as the maestro is serving up.

    I wish you all the best, take care

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It must be bewildering if the pain is moving around as you say it does, I count myself lucky in that mine remains fixed in my forty-or-so affected joints so at least I know where I am. :lol: My knees and ankles are shot to bits with OA and my hips are naturally joining that party, my OA resulted from the joint damage caused by my auto-immune arthritis (psoriatic) which is one of the many sero-negative forms. The meds I take for that don't affect the OA, for that I manage on four 30/500 cocodamol per day, they dull things sufficiently for me to get on with things as best I can. I am reliant on walking aids and will probably not bother with new knees because I won't make the best of them due to the other joints - I was refused aged 53 for being too young and now, nearly four years on, I'm accustomed to the discomfort. I prefer the devils I know.

    Have you read The Spoon Theory and There's a Gorilla in my House? Both can be found on the net and they give clear explanations of how challenging it is to live with a long-term chronic condition. Doing things to help yourself in terms of changing how you approach things is not giving in, it's adapting your behaviour to enable you to achieve more - flogging on 'til you drop is utterly pointless, impresses no-one and harms you. What's the point in that? Family and friends can't understand so it is up to you to educate and inform them, to talk about the elephant in the room but not, repeat not , ad nauseum because it's very easy to become an arthritis bore. That's why the forum is here.

    I cannot empathise with the worrying aspect of things because by nature I am not a worrier. My take is 'it is what it is and it will do what it will do' , it's here and won't be going away but I am fortunate in that I have been dealing with poor health since I was a child. If you are coming at this from a healthy background then that must make things harder. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben