The worst 12hours sorry 60hours off my life.

The flare ups just keep coming and coming i have locked myself away cant eat cant sleep cant bare my wife to see me like this,none of my medication give me relief i have in fact probably taken more than prescribed,I phoned GP and informed him that i am stopping all my medication until I see Someone from the RA, he got very concerned and told me this was a serious decision to make as i will become very ill, If this is the only way to get through to the RA then be it,My life has been turned upside down and sideways and i am still siitiing in a IN TRAY in the RA dept, Still you never know i might walk 10k have a round of golf before my breakfast tomorrow.

21 Replies

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  • Oh Mattcass,don't stop the meds because you'll be a lot worse than you already are. You don't say whether or when you were diagnosed. Don't push your wife away like that as being a wife myself and i am the sufferer i know how important my hubby is to me yes he gets very upset when he sees me crying with the pain because he can't rid me of this pain so how do you think your lovely wife feels. Please let your wife in as she will see how ill you are and might even go and have a go at the medics looking after you on your behalf. If you don't eat you can't fight this bloody disease. If you get to a point (and i think your there now) go down to a&e and see if they can help you.

    I am a ra sufferer and i am in a bad flare at the moment and am waiting on anti-tnf drugs to make my life easier,so sadly i know what your talking about. Now i am telling you to go and eat something as it will help you in your fight with dreaded disease.

    My words regaring this disease are "I WON'T LET THE BUGGER BEAT ME" and you want to do the same.

    Sylvia.xx

  • Sylvia thank you for your kind words, i know there are a lot of people out there worse then myself i was diagnosed with RA in Jan this year but have been ill since May, it's the delay by the RA nhs they are being hounded by my GP and my Chest Consultant (Pulmanory Fibrosis 7 years) the annoying part is that this consultant is in our local private hosp ever night doing important things like cosmetics on someones toes,Matty

  • I say the weekend is here so get down to a&e then see what happens then. You have a lovely wife don't lose her because of ra.You are in the right place for support. Hope you get some relief.xxx

  • sylvia as reply it is easing of already if it get bad agin i will go to A&E,Matty

  • Mattcass the team have spoken and i bet if you show your wife she will say "what have i been telling you to do.You won't listen to me listen to them" So now you know what to do and i look forward to your blog about how you got on.xx

  • get to your a nd e or out of hours immediately and they will give you oramorph? or oxycodone x

  • Sylvi's right, please don't shut your wife out, it will make it worse for her, not better. Ask her to help, perhaps maybe your wife could help putting pressure on by writing to chief exec of hospital to complain about time this is taking or other practical things if you don't want her to just sit with you, Polly

  • I've only experienced anything like you are going through a couple of times & like you I started to cut myself off from people, couldn't bear to see their faces. But maybe just writing what you did will be enough to make you realise that shutting your wife out won't help & not taking meds won't either. Threatening not to take meds is desperate measures & I just hope it has made someone in the Rheumatology dept. sit up and take notice but it could backfire in all sorts of ways.

    I so agree with the others that your wife is just the person to help you now - a phone call direct to the Rheumy Dept. along the lines of 'I'm seriously worried about my husband' may well be more effective than threats.

    Lots of good suggestions for action here already. One more: might it be possible to see a private Rheumatologist - ideally one with links to your hospital to make his or her treatment plan easy to transfer to your NHS Rheumy?

    Luce x

  • HI luce, I went private to get it confirmed that i had RA and when i asked the nhs consultant a question he told me if i have any concerns to take it up with the private consultant. this is the man i am trying to see or maybe another one now.

  • Hello Mattcass, I am so sorry to hear you're in so much pain and are being fobbed off by your rheumy! But PLEASE PLEASE DON'T STOP YOUR MEDS. It will only make the situation even worse (I know it seems hardly possible but from grim experience I know that it's always possible to feel even worse). You only hurt yourself by stopping your meds so please don't do it. I agree with the others: Get yourself to A&E. I went to A&E myself when I was still on the waiting list ebcause I couldn't use my right wrist/hand anymore and had such swollen and painful feet that looking back I wonder how I even managed to walk as much as I did. They took x-rays and did some tests and I was able to tell my GP and rheumy that I'd already been to Out of Hours and A&E, which reinforced the urgency of my situation. I was then given a very short notice appointment with the rheumy as they bumped me onto an urgent waiting list, which meant I'd be offered any appointment if someone happened to cancel. I saw the rheumy within a few weeks.

    I tend to do the same with people close to me when I am in pain. I just hate being ill and having healthy people around me and so as not to snap at them I keep to myself. But I agree, it is probably so much harder for your wife when ou shut yourself away than if she has some tasks to proactively do something for you.

    I hope you get to A&E and that things will speed up!! Take care, Christine

  • Christine thank you for your advice and kind words feeling better already.Matty

  • I'm really glad to hear that!! Keep us up to date with how things go for you! Fingers crossed yu'll get some progress very soon!

  • Aaaargh this link keeps breaking. Go to a and e now!,, they might even admit you, you need urgent attention! I wrote a long reply but it didn't go through so short and sweet. Go to a and e pleeze ! Xx

  • allanah thank you, Sod's law the pain has been easing off since early this morning but if it flares up again i will go to A&E.

  • I suspect though your blood inflammation will still be high and you may regret not getting there sooner rather than later!! I know I am a bully today, bet your glad I'm not your missus lolxxx

  • I agree. A & E, while its still weekend.

    You should be able to get help from the NHS, and not be told you have to see the private consultant.

  • earthwitch thank you,matty

  • Matt, I hope you are going to get a consultant appointment very very soon. Hope from what you said to your doc how you felt that he will help speed it up for you. He should be able to fax the consultant. It's so cold too and makes us feel even stiffer and more seized up.

    If you went to A&E I hope you got some progress on getting you in to the consultant etc due to the fact you had to go down there in so much pain.

    The others are right though don't stop your painkillers, etc .. Imagine how bad your pain will be on zero meds etc. I was just like you, and wouldn't let my husband see me in pain or help me. I am still like that with most people except two best friends, but my husband said a while back ... No pretending and no holding back. Now I cannot hide my times of immobility and pain as it is so obvious, so I have to let him in.

    When I have needed an urgent appointment before, I have also spoken to my rheumy's PA who has helped speed it up. I am rather dumfounded as to why Rheumatology can't see you etc even if you have had certain things done privately as you explained before. Are there just no appointments? Shouldn't make a difference if you had tests done privately. I would continue to make your voice heard. Even though you shouldn't have to work so hard to get an appointment. It all adds to the stress of which there is plenty already.

    My husband wanted to take me to A&E in January one night when my knees went crazy and to be honest I was off my head. Crying and irrational. I almost agreed. I was so exhausted I fell asleep eventually from the crying and didn't go in the end. Happens to many of us sadly. The pain is unbearable. Sounds like yours is horrid so keep at them and hope you get that appointment. As I said recently, it is a very bad time of year in the UK for joints which are flaring. I was speaking to a friend with RA today and she said it was biting into her was the cold. As soon as the temperature drops below 2 degrees my joints are awful and I have trouble moving. Pain so bad at night. Hope after this snowy spell finishes you might feel some improvement even though that isn't going to remedy your problem but you know what I mean. Do heat pads or an electric blanket help? Just relax you enough to be able to drop off and get a little sleep.

    I do feel you are being badly treated - baffling - and the way I see it you have gained nothing by being patient. If you do decide to let your wife support you more with the RA, let her come to your "eventual" consultation and tell them how you have been. I know you don't want to feel vulnerable or anything like that but I am sure you would be hurt if she put a barrier up if the shoe was on the other foot. We should be equal in the marriage partnership so no one is lesser thought if if they are in pain and unwell.

    Here's hoping for some progress, Matt.

    Julie xx

  • PS

    Not sure if I said before a week or so ago, that I started off with private Rheumy appointments and then my rheumatologist said to go see her as NHS as the number of general three monthly check ups etc each year, and xrays and other things such as physio would quickly use up my private health insurance allowance, so I saw her as NHS a couple of weeks after once all my tests done. So you should not be told you have to go back to the private consultant. The NHS Rheumy can get copies of all they need from the private appointments to the NHS files, etc,

  • Julie thank you,having a good day up till now going to the Gp keep you updated should be interesting Frans going with me she says i am to nice to them.Matty

  • Yes it is often best to take your OH, when you have a lot to go through. Hope no spanners in the works from consultant etc and you had a good a GP visit. Glad to know a better day for you, Matt ;-)

    Julie

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