2 years ago I was referred to a rheumatologist for ongoing pain and stiffness. They couldn't find anything particularly wrong and the issues subsided so they discharged me back to physio and my GP.
Obviously then we had Covid, and tbh I wasn't too bad, but this year the symptoms have come back again and I've been seeing a physio privately for 6 months. She thinks that it is time to ask for a referral back to the rheumy as she says I am showing markers for spondylitis, and this week the pain and stiffness have been horrendous so I have managed to get a phone consultation with my GP for tomorrow.
Has anyone got any tips on how to make sure my GP listens to me and gives me the referral? I already have all the painkillers I could need, but last time I complained about one of my knees they tried to give me anti-depressants because I burst into tears at the appointment. I don't want to do that again, and I do need to be taken seriously.
Background: I'm 53, female
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notarunner23
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Ask for a blood test and full blood count too. It is a place to start and make a diary of your symptoms so you don't forget anything. Then say I might get upset as I'm in so much pain not because I'm feeling down. Then be firm and ask for a referral back to RA team as so much has changed. Best of luck. x
I'm sorry you are suffering and it's good you've managed to get a phone appointment with your GP. Jot down the history and list the problems you're having so you don't forget to mention anything. I suggest you ask your private physio to write you a brief email listing her specific concerns - one professional's opinion to another is always helpful - and then you can forward it to the GP. If the GP could order some blood tests, including for ESR and CRP, which are the best inflammation makers, the results would show if inflammation is at the root of your problems. Once the test results are through a F2F with your GP so your joints can be examined and mobility assessed is probably the next step towards getting a referral.
Thanks for the suggestions. I'm normally quite a confident person happy to state my case, but for some reason once I get in front of the medical profession I crumble. I think it's the relief at being listened to. I watch other people get conditions and treatments and all the appointments they want, but I feel like my issues are invisible and ignored by the majority of people I know which makes me feel like it's all in my head, when the pain is actually very real!
So unfortunately once I have that status in my head I'm easily fobbed off, but I've started making some notes of the issues, and asked my physio to call me. Fingers crossed (well maybe once they swelling goes down a bit
Basically don’t take no for the answer keep pestering them I wish I had 2 yrs before I was diagnosed with RA and in that time some damage had been done all my blood tests kept coming back ok but I knew my body something was not right so speak up be a pain in the butt if you have to all the best 😷
AS is one of those that seemingly takes forever to diagnose! They should push for a diagnostic gene test (HLA B-27) which will likely indicate it followed by an MRI which will show any fusion. CRP markers should also indicate a flare. The tests are just blood tests and then MRI depending on the blood results. Good luck with it x
Thank you all again. I had the gene test in 2019 and it was negative, as were all my tests. But I can't keep going on like this, some mornings getting out of bed feels like trying to raise the titanic. It's been on and off now for over 2 years, but I read somewhere that the average time to get an AS diagnosis is 9 YEARS, dear god I can't wait that long.
Just managed to miss the physio calling me back, by being on the phone to a supplier. So frustrating, only 2 people have called me all day and they do it at the same time!
Mine took around 10 years I reckon. It was probably 18 months from my private physio picking it up but before that I had an awful back with spasm etc from about 18 years old. At 29/30 ish I got a diagnosis. It really is miserable until they diagnose and medicate you. Keep pushing for the referral for sure- good luck! x
Firstly, I would say write everything down that you want to say to your GP because you will forget something. Secondly, I don't think you will have any problem getting a referral especially with the opinion of your physio. As you are not being seen your GP he/she can't really give a proper consultation so I am sure they will refer you. If he/she doesn't, insist.
Look on the NASS website, NASS.co.uk for the referral criteria for AS. It's probably pointless to ask for more ESR and CRP tests as it is common for these markers to be normal in AS patients. An MRI is what you need. Did you have one when you were last referred?
Is there any history in your family of AS symptoms? Someone who always had a bad back, or bad eyes? Or anyone else in your family have an auto immune disease? No one in my family has AS (just me won the lottery there...) but an aunt has lupus, my nephew is coeliac and my cousin died in childhood from complications due to juvenile rheumatoid arthritis. The rheumy was interested in all this. My sister has some symptoms but negative for gene and inflammation on MRI, yet her rheumatologist has not discharged her on the strength of my AS diagnosis.
I'd ask your GP for an nsaid. Most start on OTC ibuprofen, then prescribed naproxen, then etoricoxib. Make sure you get omeprazole or similar prescribed as well. If you experience improvement in symptoms a rheumy will note this as probable inflammatory disease. It will also speed up approval for anti tnf drugs if needed.
If you are experiencing enough symptoms, the GP must refer you. The physio's opinion should also also carry some weight. Good luck!
Hi there, it may be worth spending a couple of hundred pounds, I know you shouldn’t have to, to see a rheumatologist privately, they can then refer you in to nhs if needed, it would give you some peace of mind, but agree get the bloods done first if you can by gp so you can take the results with you, all the best
Hello, my advice is to keep a journal of how the condition is affecting you. There are apps with which you can quickly and easily record things like pain, fatigue, mood, exercise etc on a daily basis(Ampersand MyArthritis) is one of them. If you go to the GP with a record lets say over four weeks or so, that is something they can't ignore or dismiss easily. I am very stubborn and demand an explanation for every decision a GP makes. I also chase them if deadlines pass without response. On the whole that pays off. I hope you will be seen by a listening doctor soon.
Wow thank you for all your support. My GP did indeed phone me yesterday and was very sympathetic. I have blood tests booked and she is arranging another hand xray. Once the results are in she is happy to re-refer me. Though listening to the news the last couple of days that might be a long wait!
Because my gp surgery is impossible to get through to on the phone they suggested I did something called e-consult, whereby you put everything in an online questionnaire and the GP reviews it at their own leisure. I found it really good, because I wasn't 'on the spot' so all sort of family history things came back to me, including how my mother had back problems for most of her life, she always said it was osteo-arthritis but I'm not now convinced. Sadly she died several years ago so I can't tap into that source of knowledge.
They've renewed my existing prescription for Naproxen (not that I get on with it) and Lansoprazole and I'm feeling more hopeful about some answers now.
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