Finally got a begrudging referral!!

[Chelle82]

Went back to gp today as I am still in pain and my big toe has been so sore, aswell as other places! I thought seeing a younger gp would help, she was horrible! She took one look at me and assumed as I am over weight its to do with it! I demanded for a referral tho, because I know my own body and I know the pain I am in! She kept referring to the bloods taken! I thought my inflammatory levels where within the normal ranges but according to the receptionist I spoke to yesterday, they were over the ranges but doctor marked them satisfactory! She said the RA was negative so I don't have it!! I am pleased I got a referral but apparently I'm in for a long wait as she doesn't think I have RA! I am so angry! Was it this hard for everyone else? X

[Livingston]

Oh yes! It took me years to get any sort of diagnosis. Rheumatology initially declined to see me (despite referral from my neurologist) because they didn't think I was 'sick enough'!

Rheumatoid factor is not diagnostic of rheumatoid disease so being negative for it is only part of the picture.

My advice would be to ask for a copy of your blood results - do this every time any are taken & start compiling a file. Diarise your symptoms & take photographs of anything visible. You need to build your case towards the correct diagnosis for you.

It's really hard, so disheartening & I really feel for you. Keep strong & keep plugging away. There's always somebody here.

[nomoreheels]

Well done for pushing on for referral. We've had quite a few similar posts recently, it's concerning that it seems many GP's are relying on blood results unaware that it's not always the case there are raised levels & would do better to listen to the patient & determine by also examining the specific joints affected & asking questions. That said your GP suspected RD & why the bloods were ordered so why leave it there when they came back within normal ranges, the pain hasn't gone has it & something's causing it? Were your bloods taken before you started taking the meds prescribed by your GP or had you been taking any over the counter pain relief or anti inflammatory immediately before you had the blood test? If so that can affect the result to some degree. It is possible you are seronegative or even have one of the many other inflammatory diseases & as you're not getting any relief from the meds already prescribed I would think an urgent referral is necessary. Unfortunately that doesn't always guarantee you'll see a Rheumy any quicker as it depends on how busy the department is but it's worth pushing for it.

As Livingston says it's a good idea to have a copy of your bloods or any paperwork reports etc. I have a file full, my complete history from the first bloods taken by my GP & it's very helpful.

Keep us updated won't you & I hope you've not too long to wait until you see a Rheumy. If the naproxen & co-co's aren't helping do ask if the dose can be increased or if he'll prescribe a different NSAID or pain relief to ease things in the meantime.

[Dekeboo]

Hi, I'm not sure if you posted prior to this but I have sero negative arthritis. Naproxen and painkillers hardly touched the pain. It started in my toe too and they suspected gout at first. But it did spread and I had to nag my dr every week about finding out what was wrong, with further tests and eventually a rheumatologist.

It took me 5 months to get to see a rheumatologist by which point I only had two joints not inflamed. It's been six months on MTX and I'm much better.

Keep going back to your Dr if your symptoms persist. Just ask if it's not RA then what is it? hope you get some relief and reassurance.

[Beverley-NRAS]

Hi Chelle82,

blood tests on their own do not give a definitive diagnosis of RA and it is possible to have negative results for rheumatoid factor but still have RA. It is referred to as seronegative RA. I have put a link to the section on our website about blood tests. Hope this helps:

nras.org.uk/laboratory-test...

nras.org.uk/seropositive-se...

Regards

Beverley (NRAS Helpline)

[Hidden]

I was diagnosed with fibromyalgia and sero neg RD last year and after a scan of hands and feet I was told by the Rheumatologist that fibro was the least of my worries and I was put on sulfasalazine straight away. I have tried a couple of DMARDs which unfortunately I had adverse reactions to and had to stop. I had an appointment last month with Rheumy and I was told that because my bloods dont show inflammation and the DMARDs didnt work I havent got RD. This was said without examining me or listening to what I said about my family history also my hands were swollen and red and painful at the time. I felt that because of my weight which is increasing still I was being dismissed as if it is all down to that. I was told that most of my pain is from fibro and osteoarthritis. I am seeing my GP tomorrow to ask to be re-referred as this has messed with my head. If it isnt RD then what it is? It cant all be down to their favoured diagnosis of fibro. I havent had a blood test since last Oct so I dont know where she got the idea there is no inflammation? It certainly doesnt feel like it! Gentle hugs Joolz.x

[Chelle82 in reply to Hidden]

That's horrible Joolz!! I thought the GP might have mentioned fibro to me but nothing has been mentioned yet!! My hands or any other joints haven't been examined at all yet! It's crazy, u c an see my hands are like balloons at the minute, they have been like that for weeks, so much worse at the end of the day or when I first wake up. I hope you get some answers soon x

[Hidden]

Sorry you are having such a stressful time getting referred. I have good GPs and high inflammatory markers when mine started four years ago - and my RF was raised so he referred me straight away - but it took 9 months to get a diagnosis as my RA is not cut and dry and no sign of visible swelling for the first 6 months.

My advice would be to photograph any swollen joints or tendons and keep a daily journal of symptoms. You should also ask to have your uric acid taken because of the big toes and possible gout.

The nasty young GP sounds rather like one we have in our practice. But fortunately there are three good senior partners and because I have a diagnosis of RA she has to take me seriously on the rare occasion when I've been to see her. I don't think youth or gender are any guarantee of them being more enlightened or having a better manner unfortunately.

When I was first suspected of having RA and referred by my GP I was borderline obese. But he never referred to my weight at all.

However I dropped gluten from my diet and also found that I lost my appetite. I started doing tai chi and gentle exercises despite the pain and built up to doing regular daily work outs on my living room floor. I made myself walk the dogs everyday even if I had to take a walking stick and hobble along. I also kept to the very lean diet and dropped dairy and caffeine and refined sugar and lost four stone over four years - despite steroids.

This hasn't stopped me being pretty ill but it has at least helped me get taken more seriously by my doctors. I do get told often that I look too well to have too much wrong - even by doctors sometimes. Last week this happened on the day of an emergency hospital admission which kept me in for 7 nights! It's a no win situation with weight and good self managemement. But I feel if I'm at least trying my hardest to keep my weight down and keep fit then everything else is just down to misfortune of poor health. I know how hard it is to lose weight when mobility is restricted but I do recommend it if at all possible.

Meanwhile please keep fighting your corner and good luck. The referral shouldn't take longer just because this nasty GP was grudging. A referral is a referral and it usually takes an average of 4-6 months - in my area at least.

[Chelle82 in reply to Hidden]

I have joined slimming world and go swimming twice a week to see if it helps, I also have Pcos and I really struggle to lose weight with it! But I'm keeping mobile and trying my best! I just wanted a referral today and I got it, I was proud of myself for standing my ground because I don't normally stand up for myself! I have started a diary of my pain, where it is etc and taking photos of my inflamed joints! Hopefully it will help when i see specialist xxx

[Hidden in reply to Chelle82]

Well done you for sticking to your guns.! No one deserves to be treated like you were and they should be praising you for your efforts and referring your regardless of your weight. I find it very hard to lose weight too - a nurse told me she struggles now because of Hypothyroidism which I have also. I've never had any reference made to my weight by my GPs. The woman GP told me that she knows her patients are well aware of being overweight - she doesn't need to further reduce their self esteem - this never helps and she feels it is just rude! Tx

[Chelle82 in reply to Hidden]

Exactly right, I think she just took offensive that I wanted a second opinion today, prob just trying to look good for her boss lol x only joking aside I just want answers and I am looking after myself aswell as I can just now x

[Chelle82]

Thank you all for ur kind advice and support! My hands haven't been looked at all by my gp or the one I spoke to today! My fingers and palms of my hands are swollen, my left wrists feels like it has a bump/lump just at the side near the joint! I wake up in the morning and when I walk its like walking on pebbles, it takes a while for it to pass! I was sick of it getting passed as viral..hopefully I will now get some answers from the specialist and in the mean time just keep doing wat I'm doing! i am just so tired, can sleep at the drop of a hat lately! Sorry to be blunt but my sex drive has taken a nose dive and that is very unusual!