GP no longer thinks arthritis but still in pain!

Dorothy
Dorothy Member Posts: 11
edited 19. Aug 2019, 04:36 in Chat to our Helpline Team
Hi, is it possible to have arthritis when nothing shows in the blood tests?

I saw my GP a few weeks back because of pain & stiffness in my joints, pain up back of heels and occasionally I have pain all over and feel really tired all the time, even after a good night's sleep. I don't get much swelling, just a little bit in my ankles, left wrist and knee occasionally, but the stiffness is pretty much permanent. It's been getting worse over the past few months and people are starting to comment on how stiffly I move, especially after I've been sitting down awhile.

The GP said he thought it was psoriatic arthritis because I have had psoriasis for years. He sent me for blood tests, but they all came back normal apart from my being slightly anaemic. He said it couldn't be arthritis because nothing showed in the bloods and there was no kind of arthritis that could cause anaemia, so now he just wants to find out why I'm anaemic and has lost interest in my joints.

So I'm being tested for vitamin deficiencies, bowel cancer etc (none of which I have any sign of apart from the anaemia) and meanwhile I have NO help in dealing with my joint pain. I'm feeling really desperate as I'm job hunting now but it's all pretty pointless as some days I can barely walk and I'm pretty sure people are taking one look at the way I move and thinking they won't employ me! And I don't know how I'd cope if I got a job anyway as somedays walking downstairs feels like a lifetime achievement!

Sorry for the essay, I'm just feeling desperate. I'm just hoping someone might know what this could be so I can at least go back and ask my GP to check that out instead of testing me for a load of stuff I don't have any symptoms for.

Comments

  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hi Dorothy.

    I'm not a member of the Helpline team just an ordinary forum member with RA.

    You ask “is it possible to have arthritis when nothing shows in the blood tests?“. The short answer is 'yes' but many GPs seem unaware of this. GPs have to have a wide knowledge of common ailments but they lack the in-depth knowledge of specialists. This is what Versus Arthritis says about blood tests (the italics are mine):

    “Blood tests such as those for rheumatoid factor and the anti-CCP antibody can help. People with psoriatic arthritis tend not to have these antibodies in their blood. People who have rheumatoid arthritis are more likely to test positive for them – especially if they’ve had rheumatoid arthritis for a while. These tests won’t say for certain if someone has psoriatic arthritis, but they can help when taking everything else into account.” https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

    As for there being 'no kind of arthritis that could cause anaemia', I so wish that were true. I'd have been spared two endoscopies, two colonoscopies and two barium enemas because I was anaemic. My GPs sent me for them because they wanted to be sure but my rheumatologist (an eminent professor of rheumatology at a large teaching hospital) just shrugged his shoulders and said he wouldn't have bothered "as both RA and the meds we prescribe for it can cause anaemia". On both occasions a short course of iron tablets sorted me out.

    Unfortunately we can all come up against the general ignorance about inflammatory arthritis. I hope you can either show your GP what Versus Arthritis says about PsA, and maybe tell of my experiences, or just find another GP in the practice. Or even change practices. You really do need to see a rheumatologist and I hope that will happen for you as soon as possible.
  • Dorothy
    Dorothy Member Posts: 11
    edited 30. Nov -1, 00:00
    Thank you so much for your reply! It really helps knowing that I'm not the only one who's found it hard getting a diagnosis - I came out of the surgery feeling so upset and alone, so your reply has really helped. But I hope I don't have to go through as many tests for anemia as you did!!!

    I have a follow up appointment at the end of September, so will try to get further with him then and will show him the information from the website. if not, I have been told there is a very good female GP in the practice; a friend said he went to her after being dismissed by another GP at the practice, and she was much more helpful. Unfortunately, it's a 2 month wait around here for any GP appointment, so even seeing someone else will take a while.

    He referred me to a rheumatologist at my first appointment, and hasn't cancelled that referral unless he's done so since my last appointment, without telling me. But I know it can take many months to climb the waiting list in this area. You can be 'moved up' the list if your GP believes your symptoms have worsened, but as my GP has now lost interest, I don't have much chance of that!

    Thank you so much for your support - it really helps not to feel I'm on my own.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am not a helpline member, just an ordinary forum member with psoriatic arthritis, a sero-negative auto-immune inflammatory arthritis. I began back in 1997, due to my then GP's complete ignorance about things did not begin the meds for five years and was not accurately diagnosed until 2006. This was because mine did not begin where it should and I did not have psoriasis until October 2006.

    Please don't do what I did which was believe my GP and so let things slide. Yours is obviously more aware but please pester to see a rheumatologist because they are the people who know more than your GP. I am sure that the delay I experienced in beginning the meds has led to the mess I am in now, the sooner one starts the better the outcome can be, something I witness every time I go to rheumatology. DD
  • Dorothy
    Dorothy Member Posts: 11
    edited 30. Nov -1, 00:00
    Thank you so much dreamdaisy. I will certainly keep pushing for a diagnosis and to see a rheumatologist soon. I don't know if it is PsA or not (although I do seem to have a lot of the symptoms) but whatever it is, it's not normal and I need an answer! Thank you for your encouragement to keep pushing for a solution.
  • helpline_team
    helpline_team Posts: 2,765
    edited 30. Nov -1, 00:00
    Dear Dorothy
    Thank you for your posting on the forum and my apologies that the helpline has not yet responded. I am sorry to hear that you are having such a difficult time at the moment. I see that the responses you have received so far from other forum members show their experiences. Not all types of arthritis show up in blood tests. For some types, for example osteoarthritis, there are no blood tests that will show that someone has the condition. I see that you have been given the link to how psoriatic arthritis is diagnosed and as you can see there is no specific test so a diagnosis will be made based on your symptoms and a physical examination by your doctor.

    It is not possible to say what it could be as a diagnosis should be done by the medical professionals. This can be frustrating when you are waiting for appointments and trying to manage the pain and it is important that you speak to your GP about the pain you are in so that they can advise on managing this particularly while you are waiting to see the rheumatologist.

    We have information about looking for employment and the support available in our information on the website https://www.versusarthritis.org/about-arthritis/living-with-arthritis/work/ and in our booklet https://www.versusarthritis.org/media/1422/working-with-arthritis-booklet.pdf
    It is often a worry when you have arthritis and how you would manage at work however there is specific information in the above booklet about disclosing your arthritis and your rights and the support you can expect.

    I hope that this information is helpful. If you feel you would like to talk to someone in confidence you are very welcome to call us here on the helpline. We are open 9am – 8pm weekdays and our freephone number is 0800 5200 520.
    Best Wishes
    Dawn
  • Dorothy
    Dorothy Member Posts: 11
    edited 30. Nov -1, 00:00
    Thank you for your reply. Yes, I realise I need a proper diagnosis from a doctor and am continuing to push for that, I was just hoping that someone might be able to point me toward something I could suggest he investigates - because right now, I am having lots of tests for things I don't have any symptoms for, which makes me suspect he doesn't know what to do! So a 'do you think I might have....?' might nudge him in the right direction!

    Thank you very much for the information on work. Right now, it's hard because I have the limitations but no diagnosis, and some days are so much better than others, and people don't understand why I can do something one day but not the next, but I'm hoping that once I have a diagnosis, this information will help me to get some understanding from those I work with and be able to work as well as possible.

    I'm so grateful to all the people who run this site - it's brilliant having so much help & support available, especially when it's somewhat lacking from my gp's surgery.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am still of the opinion that you need to see a rheumatologist because this is not GP territory. There are some conditions thst cause muscular / joint stiffness which is why you need a referral to other specialists: another suggestion is a musculo-skeletal clinic (I think that's the right name) who will look at you in a different way. DD
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello again, Dorothy. I'm suspecting that I didn't make myself very clear earlier :oops: It can be hard to explain something which is patently obvious to oneself because it's hard to appreciate the difficulties.

    What I meant was that perhaps your GP, like mine, found you were anaemic and so decided you had to be tested for a bleed in the stomach resulting from an ulcer or somesuch – an endoscopy. This is often the first thought of how to investigate anaemia. Then, when that was clear, testing for a bleed lower down the intestinal tract – a colonoscopy. And, in my case, having 'a long, loopy colon' which the scope couldn't reach the end of :roll: , a barium enema to get to the end bit.

    Of course lots of other things can cause anaemia too and your GP might be testing for them also but, to me, he's omitting the very obvious cause – psoriatic or some other form of autoimmune arthritis – because he's already decided, wrongly, that that doesn't cause anaemia and that you don't have it anyway.

    It's just possible you don't but you need a rheumatologist to decide not a GP. If yours won't refer you I strongly recommend you see another GP, either in the practice or elsewhere. Or even pay for a private rheumatology consultation. I know I would if it was someone close to me.
  • Dorothy
    Dorothy Member Posts: 11
    edited 30. Nov -1, 00:00
    Hello Stickywicket and Dreamdaisy

    Thank you for your replies - it's actually me who wasn't very clear in what I said. My GP has referred me to a rheumatologist, but it's a very long wait in this area, so it's probably going to be a good few months until I see one. I can 'move up' the rheumatology waiting list if my GP believes my symptoms are worsening, but as he doesn't think I have arthritis at all now, he won't do that. He's refusing to pay attention to anything else until he has found out why I'm anemic, and because he 'knows' that it can't be due to arthritis, he doesn't see the need for any hurry for that appointment. :roll:

    I am hoping to be taken more seriously by another GP but it's another two month wait just for that. (That's pretty standard waiting time round here for a GP appointment - last year I rang up for an 'urgent' appointment and was given a date in 6 weeks time! I'm tempted to keep booking appointments and then cancelling them to ensure I have one when I need it!!!)

    Fortunately, this week my symptoms have eased. I know from experience that it won't last and another flareup is due soon, but I'm going to enjoy being relatively pain-free while I can!

    NB: DD - thanks for your suggestion of muscular-skeletal clinic. I'll raise that at my next appointment.

    Stickywicket - if I had the money, I would be going private, but it's a struggle to pay the rent right now, so no money for anything like that. Have to hope the NHS waiting lists shorten quickly!
  • Mike1
    Mike1 Member Posts: 1,992
    edited 30. Nov -1, 00:00
    Luckily I do not have the problem of having to wait for longer than a day or two at my Surgery but what I have done in the past is turn up before they open and ask to see a GP as a matter of urgency - it worked, give it a try.
  • helpline_team
    helpline_team Posts: 2,765
    edited 30. Nov -1, 00:00
    Dear Dorothy (and thank you to everyone who's contributed)
    In some parts of the UK you can self-refer to the MSK (musculoskeletal) service, but otherwise it's a GP referral to physiotherapy for investigations and advice.
    It's worth bearing in mind that osteoarthritis may need to be ruled out (as it's statistically far more common) and you may need an x-ray of the worst affected joint.
    Regardless of diagnosis a physio can advise over your self-management. Because keeping moving (and doing specific exercises for affected joints) and eating a balanced diet to keep weight down are proven of benefit to all MSK conditions.
    all the best
    Guy (Helpline Team)

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