Telephone appointment

I had some blood tests last week due to ongoing worsening pain in my joints. I have had pain in joints and swelling for over a year. My GP said it's definitely inflammatory rather than wear and rear. It's so painful sometimes it's getting hard to work and function properly.. my hands thumbs, fingers, knees and elbows.I phoned the surgery today to check results of blood test, and they said I needed to make a telephone appointment with my GP,which I have done. I have had bloods done twice before which came back as normal. I just want to have a definite answer as to what is going on. Initially I was told it was viral arthritis, then reactive, now inflammatory. Frustrating. Does it usually take this long to start getting answers. Presumably the bloods showed something, hard waiting to find out what.

Dizzy

22 Replies

oldestnewest
  • Don't worry or panic you will get your answers when you see the dr. You know yourself there is something wrong and possibly it is ra,and you know when you see the dr. he will give you something to ease your pain or he will send you to the rheumy, he will probally give you something like paracetamol to start with until you see the rheumy. So don't worry too much it will be ok in the end. It might not ease straight away,but it will come when you get treatment. Hugs.xxxxx

  • Nothing could be further from fact though. If you do not get early treatment, it will not all come right in the end and there will likely be irreparable joint damage. A year is a awful long time to wait for a referral - and the referral itself could take another six months. Anybody would be worried. The GP won't probably give something to ease the pain either - I got nothing from mine that actually eased pain but plenty of stuff that was worse than useless with bad side effects. Paracetomol won't ease the pain of inflammatory arthritis or joint pain and it is available at any supermarket.

  • Your experience isn't necessarily the norm so maybe consider that others have had more positive experiences, that the OP isn't even diagnosed yet & as has been said is worried. For example, once my GP's bloods came back & I was referred to be diagnosed I was prescribed pain relief & an NSAID. It's an unfeeling GP who won't prescribe for a patient in pain who has obviously something inflammatory going on. I don't read it that she's had to wait a year for a referral rather she's had painful joints for a year, had bloods taken which were negative & recently seen her GP about it again. The GP has recognised from what the bloods now show that she has inflammatory arthritis rather than OA. That her previous bloods were normal wouldn't necessarily have been cause to refer before this latest bloods taken. Inflammatory arthritis is a broadly used term in the medical profession, generally used before diagnosis & not a firm diagnosis, we all know that a GP can't confirm that.

  • I had normal blood results for six months. They only became abnormal when I stopped my relentless effort of going to the gym every day (to relieve pain and stiffness) and started doing all the other unhealthy things like drinking a lot. In other words, only a quack would refuse referral on the basis of blood test results - the situation is clearly set out on the NHS website.

    In that space of time, I had irreparable joint damage in my hands.

    It is not acceptable to say that is OK because it is not the norm: it was crass medical incompetence and has ruined my life and my health and caused me serious disability and suffering - all totally avoidable if I had been treated with one iota of medical competence.

    I can't fathom out what you read: she has had two sets of blood tests. By any standards, they are only taken a few (usually six) months apart. Therefore, she has been waiting a year for a referral.

    My recommendation to her would be to seek legal advice. No doubt, as you are closely allied to the NHS, you would not agree with that.

  • The earlier two bloods test "came back as normal" & previously you've stated that the NHS says blood tests are unreliable. I don't know for sure but maybe they were taken because her symptoms worsened & could it be there were no outward signs of inflammation at the time? I know my GP would be unlikely to refer to Rheumatology on normal results alone or maybe even viral arthritis which was considered. Just a thought, maybe in hindsight it would have been a different experience for you if you'd not attempted to help your joints by going to the gym every day. Your tests may have told a different story earlier & who knows you may not have sustained the damage to your hands. I hope you now have better treatment & happier in yourself.

  • No, she clearly states that she has swelling and disability which is worrying her, as it would me. Those are clear signs of RA and other types of inflammatory arthritis.

    I had no choice but to go to the gym to loosen up. I was otherwise totally disabled and the gym helped me immensely. I would otherwise have needed a full-time carer.

    My shoulder was very badly affected and the gym certainly prevented serious damage, as advised by my physio and osteopath.

    It is my hands that have sustained joint damage and the gym could do nothing either way for those.

    I should not have to sustain disability in order to compensate for crass medical incompetence. Doubtless, if I had lain on my back all day and ate and drank heavily, I would have had abnormal tests but a lot of fat and inactive people have abnormal tests but they do not have RA.

    To spell it out, blood tests are neither here nor there and only a quack uses them to evade medical action.

    Chinese herbal medicine and electro acupuncture helped my hands enormously - conventional medicine did sweet nothing.

    Happiness has nothing to do my hands - I do wish you would stop making offensive personal comments.

    I was kept waiting for six months for an appt by which time the damage was done, and that was regardless of any activity on my part or blood test results. We just have a useless medical service.

  • Ah, I see she said there was swelling but we're guessing here, without more detail we don't know when viral arthritis was considered.

    How have I made offensive personal comments? How is hoping you've better treatments (in your Chinese meds) for you now, because I've read you've said before meds didn't help & happier in yourself as well (meaning feeling well), nothing to do with your hands.

  • If you cannot understand the OP's post, which is written in clear unambiguous English, then ask her and not me.

    It is grossly offensive to state that I am not a typical case and therefore what happened to me does not matter.

    There are posts on here regularly where people complain that they are in severe pain and disabled to the extent they cannot work or look after themselves, and have been waiting for months for an initial rheumatology appt. This seems to be the norm and it is a dangerous situation. Try helping them instead of forever trying to defend the medical services. You know perfectly well that if people do not receive medication within three months, they have a greatly reduced chance of it working or even helping, and a wait of a year is totally unacceptable.

    I've always been happy. There is nothing wrong with my state of mind which is irrelevant to this topic and your implication is grossly offensive. There is plenty wrong with my hands, which is relevant.

    You also alleged that maybe I delayed treatment myself by exercising at the gym, which kept blood tests normal. I had blood tests after three weeks which were normal and I had them again at the hospital when I got an appt at six months and they were still normal. Whatever I did at the gym made no difference to the timing of treatment so stop jumping to conclusions on account of bias. Try accepting the provable fact that blood tests are unreliable.

  • Diagnosis can sometimes be very frustrating. I remember 41 years ago when I developed Psoriatic Arthropathy it took a couple of weeks before the doctors decided what it was, and I was in hospital from day one so it is not like they did not have a chance to run me through every test possible.

  • Hi Dizzy

    I'm so sorry to hear you are experiencing such horrible symptoms and the awful uncertainty that I'm afraid most of us have had to go through at the start of the inflammatory arthritis journey with whichever damned arthritis it turns out to be. I hate to say it but this ambiguity can even linger years into treatment as nailing down a diagnosis can be notoriously hard as there are no definitive tests and the tests that there are can change over time.

    If you don't mind me asking what country are you in? This can also make a difference as to the path that primary care providers take. Equally what access to which drugs etc.

    I have to rush this morning as I'm taking my husband to the Rugby at Twickenham and I want to help you by giving you loads of information but sadly I just haven't got time and I really really feel for you! I'm certain people will be on soon and later today to give you the benefit of their experiences. You need the different tests explaining and what they mean. You need to understand what the initial treatments are even without diagnosis.

    I will pop back later to see if I can add anything that might help.

    In the meantime you can't go far wrong with looking at the NRAS website or Arthritis UK as a start.

    It's scary, we know what this suffering is like, we understand the pain and frustration.

    All the best and I will be back later.

    Mx

  • I agree with every thing Mandalou has said , I would push your GP for a referral to a rhumatologist . Good luck I hope they find a answer soon and you get the treatment you need.

    Regards Mike

  • Hi Dizzy.....If you haven't already been referred to a rheumatology consultant do insist you are referred ASAP.....if only to put your mind at rest.

    For some reason GP's seem to know very little about RD's yet they seem very hesitant to refer people who have your symptoms....when I first had similar symptoms my GP told me " at your age (then late 50's) you must expect aches & pains- take an aspirin"! Luckily I ignored her & asked a doctor friend what she recommended i should do & I got a referral to a Rheumy.

    I do have RD, but because I started treatment so early I have very little joint damage & although I am now on Biologics I honestly think I would be far worse off if I had delayed being put on Dmards(disease modifying anti rheumatic drugs).

    Unfortunately as you no doubt will have read here rheumatology appointments are extremely busy & early appointments are hard to come by......so when you make an appointment do ask if you can be put on their waiting list so that you could possibly get a cancellation.

    Hope you get sorted & treated soon!

  • I'm very sorry you are going through this, Dizzy. I think for most of us the road to diagnosis and treatment is slow and tortuous. It sounds like your gp is on the case though, hopefully this will lead to a referral to a rheumatologist and a treatment pathway that will help you x

  • Hi Dizzy,

    Sorry to hear your having a horrible time and feeling frustrated with the wait. As others have said you need a referral to a rheumatologist, they are qualified to diagnose and interpret your blood test results.

    I have been treated by a rheumatologist now for 21 months now and I still don't have a definite diagnosis other than inflammatory arthrits, but they do suspect PsA. However I am still prescribed medication, but prescribed by my rheumatologist not a GP. Good luck and I hope you get answers soon.

  • The GP is not really in a position to diagnose inflammatory arthritis and if s/he thinks that it what it is, you should ask why you are not being treated for it and for a referral to a rheumatologist.

    Whether or not it is osteo arthritis or inflammatory arthritis, it needs to be treated. I have friends with severe osteo arthritis which they have had since their 20s and they are in a far worse state than I am with RA and suffer horrendous pain which is far worse than most cases of RA. Two of them go swimming every day, one of them getting up at 5 am to go swimming before work for decades. They have had the most intensive treatment - one of them receiving acupuncture on the NHS which did not work. I found acupuncture wonderful for RA. There is a tendency on here to think that OA is nothing but in many cases it can be far more severe than RA - at least there is effective treatment for RA and it is intermittent so you get some relief.

  • Welcome Dizzy, I'm sure you are feeling dizzy at the mo! I'm sorry you've needed to join us here but it does seem as though you may receive a diagnosis once referred, your GP seems pretty confident. I hope you can find ways to ease your painful joints for the interim, do ask your GP for suitable pain relief of even an NSAID to help reduce the swelling if they're not offered. You can also try hot or cold compresses, whichever you find works best for you. Rest your most painful joints but don't overdo it, you risk stiffening up & that can hurt more! If your hands are affected some people find either holding them under running warm water helps, even washing up!

    Autoimmune diseases can be tricky. Some people have very sudden onset with clearly positive blood results & others have joint pain which is more insidious & bloods taken too early often come back negative, seems you're the latter. I was diagnosed seropositive within 6 weeks of initial symptoms & in my feet only. Nearly 4 weeks of that was me waiting to see if they improved stupidly. They didn't so a fortnight after seeing my GP & her doing bloods I was diagnosed. Though must add I wasn't living in the UK at the time. Now I'm pretty well controlled & save for the odd flare I do quite well, I've never quite reached clinical remission, which is the aim of us all, but I've been close to it lots of times. The subjects within this link may be useful at this time nras.org.uk/making-a-diagno... & you'll find lots more useful information on the NRAS site, the home page here nras.org.uk is a good place to start.

    It'll seem a long wait for that phone consultation but hopefully you'll have answers & an idea of what happens from here. We're help if you have any questions arising from that, often when receiving such news questions fly out of your hesd so we'll try to help with any you forget to ask your GP if we can. Actually why not make notes of any questions you need to ask your GP, I'm sure you've some swirling around in your head?

    Do keep us updated & I hope being here helps, we do our best to support one another. :)

  • Thank you everyone for taking the time to reply.

    I will ask the GP about a referral, as it seems this isn't going to go away on its own.

    I will let you know how it goes.

    Thanks

  • It was this time last year that I got my appointment with the rheumy, I'd been back to the doctor several times, had blood tests and an xray but it still took nearly a year and an appointment with a different doctor before I got referred. by this time I was in such pain and struggling to get down stairs in the morning. The rheumy will still need to do all the tests because they won't treat it until sure it's ra, I had ultrasound scan on my hands (on christmas eve), and finally got my diagnosis in January this year. by this time I was just glad to get some treatment other than painkillers that didn't work. I had a steroid injection (in my butt) and was put on metx., it's a horrible disease, and you have to change the way you live, luckily my treatment is working and at the moment I have no pain which after the previous year is wonderful! Once you get the answeres the treatment is there, and although it can take a little time to find what works at least you have a support network working with you , and you don't feel like you're banging your head against a brick wall. Good luck, I hope you get an answer, but if not, insist on a referral -wish I had done.

  • Thanks link, the pain is draining that's for sure. Just started a new job, and lots of minute taking which is so painful. Will have to see how it goes. I'm sure it will get sorted, it's just a lengthy process.

  • It took my GP 2 years to understand how bad my pain was. I had to go Private to get anyone to listen. The kept saying it was OA my first visit to Private Rheumatologist confirmed I had RA and gave me Steroid to deal with the inflamation. Then had all tests to confirm severity. Don't wait you need proper diagnoses. good luck

  • Hi Dizzy412,

    sorry to hear that you are having such a tough time of things at the moment and haven't got a definite answer one way or another. Please do call the helpline to have a chat if you need to and we can talk about symptoms and diagnosis. You can call us on:

    0800 298 7650 Monday - Friday 9.30am - 4.30 pm

    Regards

    Beverley (NRAS Helpline)

  • Well GP called. He said I have a very low vitamin d level, which can cause sever joint pain, and most of my either symptoms. I'm now on a seven week course of vit d, which he thinks will sort. So giving it a try and will go back if not improved.

You may also like...