Urghhh, so I went to the GP today to see if she would write a letter to the rheumatology department to prioritise my appointment. I had absolutely no luck, I told her about new symptoms that she ignored, she repeated a prescription for painkillers and anti inflammatory. She will only write if my symptoms get worse.
I am getting so frustrated with the whole situation, I want my life back as dramatic as that sounds.
People just don't get it, being told there is nothing I can do about it so don't get frustrated only serves to make me more angry, I don't want to deal with it, I don't want to take numerous tablets every day, I want my appointment and I want a diagnosis!
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Broomesa
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I'm sorry, it is horribly frustrating to be face to face with the impacts of a stretched health service when you're in pain. Unfortunately the GP has to be the one to assess how urgent your case is related to others she has, so it's her call.
I don't mean to offend, and I realise that with two children this is all very difficult, but it could perhaps help to think about how to find some calm in your life. If you've tried all avenues to get a quicker appointment, then perhaps you need to change direction? Anger and stress, whilst completely understandable, are not helping your symptoms either as they can exacerbate it all. And look at all the non-chemical pain relief approaches too.
You have without choice been plunged into a world where everything is very slow and very frustrating. And even if you had an appointment tomorrow it would still be months before you saw improvements, so expectations in this world are very different. When I was first diagnosed I was in the mind set that I'd be given some treatment and it would all be better in a week or so - as that was my experience of illness. Not what you want to hear, but it was well over a year before I really improved. And although the drugs were the major part of it, changing my attitude, stress levels and lifestyle did help a lot too. I still take 90 or so tablets a week, but am in remission now. I did get my life back, but it was a very, very slow road.
I sympathise but its the same story all over, all the NHS is stretched and really RA is painful but if you've been prescribed painkillers etc then your GP has listened and made a judgement call. I really don't mean to sound horrid but you are not alone. It is a slow journey even when you've seen the consultant a diagnosis is just one part of everything as even given a medication that suits you can take a while. RA seems to me to be a disease that affects everyone differently as do the medications. Their really is no quick fix. So my advice would be try heat and cold to ease pain and try to be patient and also its vital to get enough rest. Hard I know with children and working as lots of us have bought that T-shirt, but a clean house is not as important as being fatigued to the point of utter exhaustion and so try to prioritise can you cutdown on hours for a while , can you ask for a certificate to take some time off, can your relatives help. Sorry your feeling rotten but things do improve for most of us but it takes time. xx
Sorry to hear that you are having such a frustrating time of things. Please feel free to call the helpline at any time to have a chat:
0800 298 7650 Monday - Friday 9.30am - 4.30pm
Best wishes
Beverley (NRAS Helpline)
Hi there Broomesa,
I think there is a lot of mileage in what helixhelix and others have said about working on a certain level of acceptance, making your very busy life as calm as it can be and really looking after yourself all round to the best of your ability. Apparently little things like not skipping meals, getting the best nutrition possible, as much exercise and fresh air as possible, going to bed early etc. can make a huge difference with this disease .... the rules of the game of life change & things that were simply good sense before can become vital.
I hope there's a time in the not too distant future when you are being effectively treated and responding well. And then you'll look back at yourself as you are today and wonder 'I did all that! In those circumstances? Wow!'. So you might as well start now. 2 kids & a job and this hellishly frustrating situation plus pain & fatigue is gruelling stuff and let's face it, you are bl**dy wonderful. Please acknowledge that & glean whatever bit of comfort you can from this fact.
However, a 31 week wait is a long one. Too long. I think that's a fact too. So your GP will write to rheumatology asking for a quicker appointment if your symptoms worsen. What are your symptoms? Because if my symptoms worsened in your situation I'd be back to that GP pronto. I'm assuming your GP is monitoring your inflammatory markers, if not he should be. If they rise significantly then that would be a red flag. Any increase in swelling, stiffness or fatigue etc. might also be considered red flags.
How about giving yourself a month off from the battle and just looking after you? (Unless things do deteriorate in that time of course.) And then writing a conciliatory and yet definite letter to your GP detailing the impact of the disease on your life and that of your children. Any decrease in 'function' i.e. greater difficulty doing stuff ... opening jars, cooking, walking, driving, tasks at work etc. would be very relevant too. GPs and all doctors hear a lot about pain but 'function' is more specific. Though if pain does get worse, bung that in too. And basically reiterate that while you understand that rheumatology services are under pressure, you would still like to ask for an earlier appointment if at all possible.
So basically I'd go for a combo of helixhelix's approach and the 'water on a stone' approach too. But if your disease worsens significantly, make that a torrent, not a drip.
I know I was too patient while awaiting a referral. The first rheumy I saw was not impressed by the mess I was in. She took the time to disillusion me about being 'not too bad'. I don't think my GP ever really 'got it'. Since then I've tended to persevere more when necessary. But yes, a lot of us have been where you are now and got a whole lot better eventually. I hope just knowing this will ease your burden even if just a little bit.
Bloody frusterating isn't it? I hear you and fully understand how you feel. RA sucks!!!
I know how scared you are. My advice to you is to relax and take a deep breath. Worrying only adds stress and makes your symptoms worst. It takes time for our doctors to find the right "cocktail" of meds to help us reach remission.
This is an awesome site for information and support.
Oh Broomesa, I'm so sorry you're feeling so bad. It can be frustrating - I've had RA for over 40 years, and have had to accept the pills, the deformities, the pain and exhaustion, the operations and disability. There is no choice. It sucks and it can be a lonely and scarey place. We have all been there, everyone on this site.
But we do have a choice. We do have a life. It may just be a different one from what we'd planned. Try to look for the positives - there will be some! On my worst days I can always find something good (I've been virtually house bound for over 3 months following complex ankle surgery and now need further surgery. Plans for this summer have gone out the window. BUT I have a wonderful hubby, my third grandchild is due, and I'm now looking forward to starting afresh next year)
Does your rheumatology department have a Helpline? I'm lucky, mine has a number to ring and talk to one of the rheumatologist nurses for advice. My consultant is great, knows me well, and in extreme times I can phone his secretary - he will then either arrange for my appointment to be brought forward or give me a quick phone call with advice. (I have very rarely done this! )
We have an amazing health service but it is overloaded. Your GP has to make many judgement calls every day, it is not personal. If you are really concerned perhaps try talking to a different doctor; or go back again and calmly emphasise your worry over the new symptoms. He/she may be able to explain the symptoms and reassure you.
I hope you are already feeling better than you were. Try talking to friends calmly about how you feel - rather than ranting about useless doctors! Have you come across the "spoons" theory? Can't remember the link but someone here will know what I'm on about! Good for explaining to people how you feel.
I know how you feel. I so desperately wanted my life back, and three years later, it is a distant memory. I'm in the U.S. so I didn't have to wait to see the rheumatologist but even after a diagnosis and treatment, life isn't the same. It's mostly about finding a new normal, dealing with things as they come, and doing whatever you can to help control it with diet and exercise. Best wishes to you.
Hi My suggestion is that you get in touch with your local PALS (patient advice and liaison service) They can often find information out on your behalf. nhs.uk/chq/pages/1082.aspx?... If nothing else you can express your frustration in a proactive way.
My GP wasn't very helpful either, even after blood test and X rays showed something was going on, plus feeling generally awful.
I was told by my GP that RA, if it was that, was at a very early 'mild' stage and that there was a long waiting list to see the Rheumatologist, up to 6 months.
Long story short, I rang the Rheumatology dept. for a bit of advice as to what I should take/do while I was waiting for appt and ended up speaking to rheumy nurse who asked a few questions about joints swelling etc then gave me a cancellation appt for the next week.
Glad I did now, RA/RD was neither 'early' or 'mild'!
So, that's worth a try.
I'm giving GP the benefit of the doubt on this one as they're not specialists are they, and I know our wonderful, overstretched NHS do their best, but if your intuition is telling you you need to push a bit, go with it.
Good luck to you, know how frustrating it can be xxxx
Then I would make an urgent appointment to see a different GP at the same practice, if there is one. I realise not all practices have more than one, mine has four and I can ask to see whichever one I choose (not that I do very often, but I can). If that's not an option I'd go back to the same one, she'll get sick of seeing you eventually and do something about it. 😀 Show them the printout, express your concerns and tell her that your symptoms are getting worse by the day (which is probably true even if you can't feel it).
If still no joy I would call the rheumatology department, the rheumatology emergency number (ask the hospital if you don't have it), the consultant's secretary (ask hospital) and then PALS, in that order.
Repeat until appointment is brought forward.
Be nice but firm and assertive. Getting upset on the phone is fine, but shouting isn't.
Try not to get upset though, it won't help your symptoms. I know it's easier said than done.
Again I realise all hospitals / GPs / heck, people are different, but in my experience of rheumatology and the people that work there, they 'get it'. They know that everyone is equal, but they also know that some people have a medical reason to be seen more quickly. You are one of those people, and I feel the right person could and would do something about it.
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RA so frustrating
Frustrated with NHS service
FRUSTRATED!!!!!!!!!!!
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Frustrated
