How many trips to the GP did it take you to be diagnosed with RA?
I've had pain in my hands and feet (especially hands) that will come and go for around 2 years. I've been to the GP twice, first time I was told its repetitive strain and second time they were vague and said it could be carpal tunnel.
I have an autoimmune disease (thyroid ) and family history of RA. I'm 46.
I woke in the night yesterday with my hands feeling they were on fire, along my knuckles, fingers, wrist and I'm having to hobble around as my feet also feel on fire. I wouldn't say my hands are swollen and there is no physical redness . I've never had them hurt as much at the same time.
I am beginning to think Its my mind saying I have arthritis as 2 GPs have said they dont think I have RA.
I really would like the blood tests for RA, I don't know if I should go back or should just go with the the 2 diagnoses. How hard did you have to push to get your diagnosis ?
Apologies if this has been asked alot, I did search this forum. Many thanks
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Marionfromhappydays
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Poor you unfortunately a blood test don’t always prove you have the disease. I’m s-negative my bloods never showed my disease so I spent at least 10 years going to the gp who blamed depression mostly honestly thought I was going insane it was a relief to be diagnosed in the end. Only a rheumatologist can diagnose RA often from a physical exam scans and X-ray and bloods will be included. My advice as there is a family history is to push for a rheumatologist to see you. Keep a diary of symptoms eg how stiff or sore you are . Is it in the morning ? Etc take photos if swelling. So when you do get an appointment you can show your consultant to help with diagnosis. Good luck
Your story sounds a lot like mine. For about two years also I made several visits to the GP with very painful hands, I had trouble opening the door to let the dog out first thing and getting dressed.
I was told numerous things it could be, the doctor noticed a small spot on my hand and said it was probably a reaction to a insect bite. Anyway, to cut a long story short, my hand became very swollen and I saw a locum doctor who finally got me referred to a Rheumatologist after nothing showed on a X-ray or in bloods but because of the swelling I was referred. Nothing, showed up in my bloods until I became worse. I was diagnosed with Sero-negative RA within 10 minutes of my first appointment but this changed to Sero-Positive Erosive RA about 2 years after my initial diagnosis.
In my opinion for what it’s worth, my story is not unique. Many of us have had to fight to get diagnosed or get a referral, RA is a mysterious condition at times and doesn’t not always present itself in text book ways.
I would push for a blood test if you can..good luck and I really hope you don’t have RA
Hello and welcome. I'm sorry to hear that you are having such a touch time. If can be very difficult to diagnose RA or other types of inflammatory arthritis. From what you are saying it could be RA or osteoarthritis or repetitive strain or something else. Blood tests can give you a little idea of the nature of your pain and might show something that could be linked to RA. However you could have negative blood results and still have RA or something else. I was initially diagnosed with seronegative (so negativ blood results) RA because my blood tests never showed anything. It was later changed to psoriatic arthritis. GPs often don't know that negative blood tests can still mean that something is wrong. I was lucky that I saw a really good one with a special interest in rheumatology and referred me straight away. What I'm trying to say is that the initial stage of referral is the hard bit and that lots of things could explain your symptoms. I'd suggest taking pictures if you notice any swelling or redness. You could also write a pain diary that you could show your GP. I think you should definitely have blood tests done to check for inflammation as all as other things such as thyroid levels. Be a bit more forceful and I'm pretty sure that the NICE guidelines suggest blood tests for joint pain that has lasted longer than 6 weeks. Good luck
I'm sero-negative, that is negative to Rheumatoid factor testing. But I had such classic symptoms when I first had an attack that it would have been stupid to think that I had anything else, so it was easy. If you don't have a classic presentation then many doctors don't recognise it and if the blood tests are negative for both inflammatory response and you're sero-negative, it tends to be a waiting game.
Keep your own careful account with photos so that you can give a summary of the clinical picture to any medical person you see. Personally with a family history of Rheumatoid Disease, it would be worth pushing for blood tests - but bear in mind they may be negative despite still having RD.
Thank you all for your replies, much appreciated. I will keep a diary of my symptoms and go back to my GP later this year hopefully when this virus situation is over.
Don’t wait. No need to wait. Get a telephone app with your GP and demand a referral. If it is you need to get the right treatment. Don’t want to end up with unnecessary damage to your joints.
My GP said it was 'just wear and tear' from osteoarthritis in my hands and fobbed me off, despite the fact that I'd had burning knee pains come out of nowhere also. It got really bad then I eventually went back and as far as I recall saw a different GP, who referred me to rheumatology.
I'm sure you know all the symptoms of RA, but one of the things that made them make the referral from what I recall was the fact that the symptoms were symmetrical (same joints hurting on both sides at same time). I'm sero-negative also, btw. What J1707 says is very good advice - keep a diary of all the symptoms and sadly you just have to hassle them (nicely) to get looked at. Good luck - hope you get a phone appointment soon. In our area they also have a video appointment system now, which uses different doctors - if there is anything like that in your area it could be worth a shot.
Push! And then push some more. By phone, email, letter but make yourself heard. You should be asking for blood tests and a referral. Persistent joint pain in more than one joint, morning stiffness and swelling (even if only mild) should make it automatic to be referred! Dim doc...
Same here it took about 2 yrs my hands ache no swelling at all but hot the first time dr said it’s your age 62 it’s just arthritis then my back started dr said it’s just your posture so sent me to physio then my knees they did blood tests all came back negative I kept going back next blood tests were on border line so sent me to see rheumatoid consultant straight away he said I’m sure it’s just arthritis your lucky things got worse couldn’t walk pain was horrendous I wanted it all to end . But eventually they said it’s rheumatoid arthritis I am on methotrexate injection s benepali injection s my life is lot better than it was so don’t give up keep pestering them ring them up scream if you have to be strong things will get better nearly 3 yrs I had to wait for answers xx
That's awful keep trying my GP refferd after only a couple of visits but it took forever to get appointment with rhuemytolagy due to waiting time so push and ask gp if it would be possible to refer you good luck xx
In fear of going on a rant, I had a shambolic, distressing, disrespectful 18 months plus of my consultant not believing my signs and symptoms, she rang my GP and said so. I found this out through FIO request of my notes. I have no idea where her disbelief came from. Luckily she retired , I got a new consultant and things have been so much better. I moved house and have a new GP, she is excellent.
Don't give up, challenge, challenge, challenge , ask for answers, question and question again until you are treated with the care you deserve.
My regular gp told me to go home and take paracetamol twice. It wasn't until I went back for a 3rd visit and saw a locum, who said that what I was experiencing clearly was not right, that I was sent for blood tests and the journey began. Thank goodness for locum doctors who listen !
Go back and keep insisting. Ask to see a different doctor if your surgery has other partners.
It took about 3years until they did a blood test. I had never heard of it, so was shocked but relieved to get something as was constantly at the doctors! It was only after getting my finger swelling up to twice the size that they said actually it could be rs. my doctor put me on lots of antibiotics and there I thought something wrong with my finger. But before that I had been in incredible pain on every joint! I could not move my arms past my waist!
So as everybody has said be loud and ring up text and email for an appointment! Its no life living in pain! Best thing was get on these drugs!
Poor you. I was SO lucky. I saw a doctor I’ve never see before at my local surgery. He listened to what I had to say, took my hand as if he was going to shake it squeezed it and said ‘ does that hurt?’ It did! I had some bloods done too. GP said he would fast track refer me and did. My appointment took a bit longer than expected to come through but it did and it was decided that I had sero-negative inflammatory arthritis.
I know from reading letters like you and speaking to friends that I was unbelievably lucky.
If your doctors ‘don't think it is RA’ ask the what they do think it is and what they intend to do about it. If it’s at help I told the doctor I saw that apart from the pain I had had to put plug pulls on all of my plugs because I couldn’t grip them to pull them out of their sockets.
Hopefully you will get somewhere soon although at the moment getting an appointment might be difficult.
PS I said to the GP that my knuckles and joints didn’t look distorted and he said that if treated promptly then there is no need to see that these days.
It took me many trips to GP to get a rheumatology referral but so pleased I did. With your symptoms and family history and other health issues definitely need to sing loud and proud for that referral. Took a few visits to my rheumatologist too before official diagnosis as my RD does not show in my blood tests. Keep asking though and keeping a note of symptoms, photos etc will really help. Wish I had come across this lovely forum before my diagnosis. Need to get meds started as soon as if any kind of RD. Keep in touch and keep us posted won’t you. x
I've just been diagnosed after 5 years of issues, my first referral was 5 years ago to a neuologist who told me it was psychological! It was a recent flare, began Feb that led to my diagnosis last week. Like everyone else here suggests, diary when the stiffness and pain is, how long it's lasting after you wake up etc. Also photos. My fingers are really slender usually and my GP did not believe that they were swollen, so after I had to take my rings off (just about managed) there was no way I could get them back on as the swelling got worse - I took a photo with my rings above my finger joint as a measurement to show her, it was really really obvious then. This image really helped with my consulant too, I printed them off for her to keep in the file as well. All the dialogue with my GP had to be through text because of the current situation, so photos were very important. Please keep at it, before you end up on high dose steroids like I did just to functio in the short term. There are appts with consultants at the moment, and if your GP is reluctant to refer wave the NICE guideliens for referral under their nose, even if blood tests are normal you should get an urgent referral when there is symetrical swelling in both hands or feet. I hope this is helpful. Keep asking questions too, the people on here have been an absolute lifeline, and kept me going when I felt like there was little hope of an appointment and that noone was listening to me. Good luck!
Thank you for all your help,I got a telephone consultation with my GP, she has prescribed naproxen wants me to take it for 2 weeks and then if I still have pain they will do blood tests.
My step dad sadly died on sunday and my pain started the day before so Dr thinks its possibly stress related and she did mention viral arthritis??
Without your help I know I would have just put up with it and not phones the Dr so big thanks.
I think I'm going to ask for the tests anyway in a couple of weeks.
Like you I was told [ without any tests being done ] it was this, it was that, I had carpal tunnel syndrome etc it was an emergency Doctor who said he thought it was RA and arranged a blood test and an appointment at the RA clinic the very next day where the blood test results showed that I did indeed have RA, I was in agony by then and i'm not ashamed to admit suicidal, I was given a steroid injection and started on a course of steroids it was as if i'd had a magic wand waved over me, within 2 days I was pain free so yes don't accept a diagnosis without tests persist till you get there I for one will be eternally grateful to that emergency Doctor who didn't even hesitate in insisting on further investigation
Hi it took me 3 years before a doctor believed me sent me for blood test and RA diagnosed. One dr said i was overweight another i wss paranoid another. I wasnt relaxing enough annd so on but i knew i was.not right. So keep going ask for blood tests good luck xx
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