newbie, waiting and worried!!!

caprica

Hi all,
I havent posted before but have been reading the forum for a few weeks.

Just over 5 weeks ago I started having strange RA-like symptoms - 2 swollen fingers on right hand, one swollen toe on right foot, discomfort walking on the balls of my feet and some mild aches in my muslces and joints in general. It tends to change from day to day and even though the swelling has gone considerably down in the past 2 weeks (only one finger is noticably different from the left hand), i am obviously concerned as the aches continue especially in my feet.

I went to GP a month ago, got blood tests, all came back negative, the GPs seem to think i shouldnt worry too much at this stage but i have been referred to rheumatologist at the hospital and GP told me they'd refer me 'urgently'.
After this I waited 2 weeks very paitently, tried to enjoy Christmas..didnt hear anything... so rang up today and was told I should get my appointment date soon, but that their deadline to see me is the 30th march.
ARGH. That doesnt seem very 'urgent' to me!!! The GP said to me they should be able to see me at the start of jan, I think he totally made that date up now!

Im guessing after the first rheumy appt whenever that may be, unless my symptoms worsen, they'll only send me for more tests which, in true NHS fashion, will take forever to come back.

I just dont see any hope for getting this diagnosed/treated soon. Im losing my mind from worry, mostly because the GP keeps saying "It's probably not RA, stop worrying." but then he won't offer me an alternative idea of what it could be, apart from a 'strange, one off inflammation'. That just seems ridiculous to me, after 5 weeks anything like that should be gone, surely!

If it is RA, I need to stop/delay joint damage as soon as possible! The fact im just sitting and doing nothing whilst something awful may be happening to my joints keeps me up at night, I feel like I'm going crazy some days especially when some new symptom shows up.

Oh, im only 23, slim, non smoker, fit, eat pretty well and never been sick in my life until this. I think that's the reason im so sure it's something serious, my body's never felt these sensations before, it's very unsettling. Just because i dont have RF+ and my pain is very mild doesnt make me feel any less worried! If anything, my age should get me treated quickly, shouldn't it? I have to use this body for another 50 years!!

Anyway sorry for the long ramble, I have built it all up for so many weeks. I don't know who to turn to, my poor worried friends have no answers for me. My question to you is: how long did it take you between first showing symptoms and then getting treatment?? do those of you who delayed treatment feel worse than those who got it quickly? and do you have any advice as to how i can speed things up a bit and get the rheumy to take me seriously at the first appointment?

Thank you so much for reading, if you've managed to get through all that!!!

Take care x

lindalegs

First of all Caprica ......DON'T PANIC ! ...and secondly welcome to posting.

From what I understand you could still have RA although it doesn't show up in your bloods..... but some people can just have one attack and then it can disappear too as quickly as it came.

As for the time of diagnosis it is different for all of us. E.g. I got my RA immediately after childbirth, the same day my second son was born and all my joints stopped working over a period of 3 weeks - but that was what they call a major flare so mine was pretty obvious. That was when I was 27, 24 years ago now. It sounds as though yours is just creeping in so diagnosis for you is very different.

The only way to speed up your appointment with your Rheumy is to become a nuisance to your GP who should be supporting you with your pain till your date comes. Are you on meds and if, yes, are they helping?

Once you see a consultant tests and the ensuing results will come through pretty quick, as they'll take your history, bloods and possibly x-rays ...oh and probably a urine sample too.

For painful swellings you could try ice packs (a bag of frozen peas on a damp fannel on the joint for 20 mins) or heat packs and even hot baths can helps.

If there's anything else you're worried about, please ask, we're here for you.

Luv Legs

PS Damage to joints doesn't happen overnight so please try not to worry.

madness1985

Hiya,

I was diagnoised with RA in late 2008. I was 23 too. You can have negative blood results but have RA. My RA started after my mum died a trauma brought it on. It started with aching knees, feet pain when walking ect. Im 25 in a few weeks life is different but every case is different. The important thing is dont panic and try and relax.

Oh yes and it took me 3 months to get an urgent appointment and 2 letters from my gp! I may have waited longer but i went to see my GP every day because of the pain! Just take the advise from your gp/rhmy if need be take pain killers and if you want to chat feel free to send me a message, finally this forum is great for advise and people who understand what your going through.

Take Care

x

salamander

Hi,

I had a similar thing happen, mistakenly given an appointment 3 months ahead. I talked to my GP's practice and they got it bought forward by 2 months as I had been booked into the wrong clinic!! I wasn't able to walk at all though so it was quite severe. I too was worried about permanent damage but, from what I've been told, it doesn't happen that quickly but perhaps you could talk to your Gp about your worries? I can understand your concern as I was very worried too but my GP kept me going with anti inflammatories and other painkillers and advice, which you'll find here too!

It seems to be common that it takes a while to get a diagnosis and appropriate treatment if your arthritis isn't easily identified at the beginning. It seems to be like that for lots of people.

I hope you manage to get the appointment bought forward and some support from your gp.
Sally

jaspercat

Hi, the RF factor dosen't always show in your blood, that is called Sero-negative RF, it took me about 6 weeks from the time the gp referred to being diagnosed, it involved blood tests, full examination and x-rays.

Sometimes if they are not sure you will have to go back later and tested again, so it can be a long path, so don't despair, ask your gp for extra pain medication in the meantime if you are still in pain love Jaspercatxx

annie_mial

Bloods don't always tell the whole story by any means, in almost 10 years I have never had a raised inflammatory marker although I now have two different types of inflammatory arthritis. The second one has just been labelled as 'sero-neg polyarthritis' for want of a better term.
Very often the story turns into a serial - parts two, three and four etc. could be months down the line, but, while I may have been lucky, I have found that once you are in their sights they don't forget you.
If you do have to wait, your GP should be able to give you anti-inflammatories and painkillers to keep you going; go back and see your doctor whenever it is necessary to get the help you need and tell him/her firmly what it is that you require.

Good luck on the journey!

Annie

woodbon

Hello, Welcome, although sorry you need to come here, its a great place for support and help.

It sounds to me as if somewhere along the line, a mistake has been made or a misunderstanding. For your peace of mind and health, I would go to see your GP or ring him, we can book a phone call and the GP rings us, I don't know if you can? Tell him about the worry and pain, say you understood you'd get an earlier appointment than you'd been given and see what he says.

Its possible something was left off your referral letter, the hospital misunderstood, or you misunderstood. The latter is not so likely, but it sometimes helps to crawl a bit!!!

Hopefully, you'll get things sorted out. Let us know how you get on.
Love Sue

PS I have OA, but some of the symptoms of RA and I've had it for several years, my GP takes blood tests every six months, as sometimes the markers don't show for a while.

caprica

Thank you all for your kind words of support!!

Lindalegs, yes I was on ibuprofen then naproxen for a bit but decided to stop them a couple of weeks ago because I think once the initial shock of feeling sore and just 'wrong' wore off and the huge big red sausage fingers went down I realised I can cope with the pain in my feet for now and to save the painkillers for when it's bad. I'll just get very drunk every day instead.. haha. (kidding, well.. maybe!).

I think I will take all your advice on and try speaking to my GP again after the weekend about my concerns. I guess the thing that puts me off the most is every time I see him he just looks at me kindly, with a bit of pity, but seems to not think this is something too serious. He keeps saying that it's good news my bloodwork is negative (even though I said to him I dont find that reassuring) and he says whatever it is, there's great treatments and I'll be fine, but he thinks I'm paying "too much attention" to everything in my body just now and stressing myself out. I've asked him lots of times what else he thinks it could be, if not arthritis, and all he comes up with is 'a temporary sudden joint inflammation'. I guess maybe he's just trying to make me feel better until symptoms either worsen or improve, or until the rheumy does more tests to confirm. Sigh...

I just hate feeling so helpless and out of control. I'm scared to wake up every morning in case something's swollen up, or in case my hands feel stiff again and do a ridiculous 'body check' of squeezing all my fingers and toes in the first 10 seconds of waking up.lol Ridiculous obsessive behaviour already!!! I know I am going around in circles and can't keep being afraid of what might happen as I am ruining whatever relatively active and healthy days I am experiencing just now. It's so hard to distract yourself. I keep trying though!! And you all seem to have found a way to manage so I will have to listen to you and learn!

ritwren

I just wanted to say hello and welcome you to the forum. Waiting is of course so very difficult but not at all uncommon. Most people wait months for an urgent appointment, I did a couple of years ago when I was first referred to Rheumatology. I eventually got an appointment, was told I had OA and discharged from their care, all in the one day.
I was of course misdiagnosed and ended up in hospital last year with a major PA flare. By that time I'd had several small flares which I knew were not OA but could do nothing about. I also worried about the effect of not being able to start the proper treatment but there was nothing I could do about it. I'm now on methotrexate.
Have you tried going onto the young person's forum too? You might get some more help and support there as well as on here. There is also the helpline number at the top of the page if you want to talk to someone. When first faced with this disease it's good to have lots of options to discuss it with folk. Unfortunately I've found most friends don't know much about it.
I agree with everyone when they say that sometimes it pays to keep on at the GP to try to hurry your appointment along but don't build it up to be the answer to all your questions as it might not be at all.
good luck, hope to see you around here
rita