Still no diagnose, getting desperate

Hi.

Sorry for the long rant, but need to get this out and hope someone has some advise.

In summer of 2015 I started to feel some joint pain in my feet. During the autumn it spread to my hands and wrists. GP advised to see if it went away on it’s own.

Spring 2016 pain got worse with stiffness and joints feeling warm. Got referral to Rheumy. Blood test, ultrasound and MRI showed nothing (RF, anti-CCP, ANA). Rheumy tried to put me on a short course of prednisolone. I felt relief (though pain didn’t completely vanish) but rheumy and GP agreed it had no effect.

Between summer and end of the year had two more appointments with rheumy, blood test was negative. Rheumy gave up on me.

GP referred me to a neurologist, in the beginning of this year. He couldn’t find anything causing all the pain, but sent me to orthopaedic surgeon who recommended insoles for me. Got insoles, but I am not quite sure how much relief they provide.

I’ve been on 1000 mg paracetamol + 400mg ibuprofen for the pain 3-4 time a day. It only took the worst of the pain. Tried tramadol, but can’t cope with side effects. Through it all I’ve been very tired. Some days coming home from work, feeling like crying in pain and just had to go to bed.

In the spring I was also diagnosed with psoriasis, something I’ve probably have had to some degree for years, but since it is mainly in my ear it hasn’t been easily visible.

GP sent me to another rheumy, who just noted that my blood test so far have been negative and since I don’t have large/visible swelling of my fingers, dismissed psoriasis arthritis.

Now GP has referred me to a pain clinic with chronic pain.

I’ve just moved to another position within my firm in order to be able to work more from home. However in the beginning I need to be at the office, this of course coincided with worst pain yet and joints that got tender to touch.

So I got desperate and decided to test with prednisolone again. Started with 15 mg per day. It has taken most of the pain and stiffness away. The second day I could get by only on paracetamol and on the third day I went without painkillers. Though my joints still feels warm and I feel a bit more pain in the evening (I take them in the morning)

My GP finds it strange prednisolone works so well for me, but has agreed I keep taking them (over the next few weeks reducing dose to 2,5 mg) until I get into the pain clinic (long waiting list).

For me that doesn’t make sense, as I understand if prednisolone works there is inflammation or is that not true?

Also I am not comfortable taking meds with so many side effects without any diagnosis.

My last blood test was 6 months ago.

So my questions are do I insist on new blood tests? Does it seem right to just accept the referral to a pain clinic? Should I push for any other kind of tests? Any input and good advice is highly appreciated.

25 Replies

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  • I'd suggest you ring the NRAS helpline as we are not medically trained and RA affects everyone a bit differently: I test positive so it in no doubt I have RA but I believe some have it yet no positive test result. For most of us, its a long journey and only by talking to your Consultant and GP can you get proper advice. No one likes taking medications but if they work why worry ?

    I have no idea if a pain clinic can help but it can't do harm but please do ring the NRAS helpline.

  • Unfortunately I don't live in the UK. I would prefer to get advice from my GP. However the GP have at no point come up with any ideas herself. When I first went she said, seems like a good idea to have a specialist look at you, which kind of specialist should I refer you to?

    Silly me, I kind of assumed she should know....

  • On the whole it is best not to rely on just your GP regarding RA...your GP did refer you to a rheumatologist so she does agree you need specialist advice....although as she appears to have asked your opinion as to which specialty to choose I wonder .............?

    Try asking for a referral to a different rheumatologist....... Oddly enough - a different Rheumy can interpret results very differently.

    Or could you see a different GP in your practice & get a different view on your pain?

    I agree with you about not just staying on Prednisolone with no preventative drugs.....just because it eases the pain.

  • I think at this stage I would be seeking a second opinion from GP/Rheumy specialist, although perhaps the pain clinic may have some suggestions for you. Hope you get more answers soon.

  • Hi, Its really difficult when your life is so radically affected by illness and there is no 'proof' of it. My bloods were also normal and there was minimal or no swelling. I was however exhausted, feverish and taking cocodamol around the clock to cope with the pain. I was fortunate in having been with a consultant for ten years for another AI disease who recognised this for what it was and referred me to a Rheumatologist. (It's worth mentioning perhaps that I have Crohn's disease and even when colonoscopies show severe inflammation in my gut my bloods barely register it 😒) The first one I went to was no help at all but the second has been great. He told me that treatment in cases such as ours is part of the diagnostic process - I've had intramuscular steroid injections and am responding well to Methotrexate so his point is well made. Please don't carry on suffering, find a Rheumatologist who has the experience and willingness to look beyond the obvious. Wishing you luck xxx

  • Thanks I will keep pushing to get a diagnose.

  • Try asking for a referral to a rheumatologist who specialises in PsA. As you have psoriasis, that is the most likely way that you will get a diagnosis, I think. I have PsA although no psoriasis but my middle son has severe psoriasis and when I mentioned that, that's when the penny dropped with the rheumatologist. Good luck, it's miserable when you are in so much pain and you're told that there's no reason. Clemmie

  • I have been thinking PsA myself. Though another point against me is that they always ask me about family medical history. I find this extremely funny since I am adopted from South Korea and in no way look Danish. But that also sadly means no idea about heridity medical conditions

  • Hi there. Like Barrister I would say that psoriatic arthritis is definitely something to investigate further. Psoriatic Arthritis does not necessarily show anything in blood tests but having current psoriasis, however mild, is a big tick in what I think is quite a short list of diagnostic criteria. The fact that you have now responded well to steroids does suggest that you have an inflammatory condition. I think I'm safe being so categorical about that, I've yet to meet a rheumatologist who hasn't seen prednisone as a 'test' for inflammatory disease as well as a source of relief.

    I've been diagnosed with PsA for 5 years and have never had the classic 'sausage fingers', lots of people don't. However I know of one woman in Australia whose rheumatologist would not go with a firm diagnosis of PsA without seeing that symptom. Which seems a little strange but then the road to diagnosis of PsA is littered with rather peculiar professional opinions! Therefore the trick is to get to a PsA specialist if at all possible!

    Psoriatic Arthritis can affect the entheses, the points at which tendons attach to bones. We have a great many of them! This can lead to widespread pain without swelling. I've just transferred to a really good PsA specialist in the UK and she told me that enthesitis is sometimes the main symptom for people with PsA.

  • I also don't get the "need" to have sausage fingers". Danish guidelines says it can be a symptom nit that you need to have it. I think i will try to find a specialist in PsA and see if I can convince my GP to give me another referral

  • A specialist is obviously best. But failing that, a general rheumatologist whose profile (do Danish consultants have online profiles as they do in the UK?) lists an interest in PsA might be a good bet. Just 'tell' your GP you want a referral! I mean be upbeat and adamant or positive and firm or whatever works for you that's 'nice' but definitely assertive!

  • Unfortunately Danish consultants doesn't have online profiles. I tried to google it but came up short. Will try to find a Danish forum and see if anyone have recommendations. And when found will definitly push for a new referal

  • Hi there. I'm similar with initial RA diagnosis with nothing showing at all in the bloods. I was put on methotrexate and am responding well as far as actual joint pain is concerned but I have enthesitis in tendons in my hips , lower back and around my knees mainly which sometimes becomes unbearable. I also have psoriasis though mildly. The rheumatologist won't give me a psoriatic diagnosis as I have never had sausage fingers or toes! In addition to the MXT I take slow release Brufen every day which sorts out the tendon pain unless I have a bad flare then I have steroid injections in my hip or back.Most of the time I'm pretty normal.

    You need to push for help on this and demand to see a decent rheumatologist so that you can get the treatment you need.

  • I will try to find someone who specialise in PsA. Just not easy in Denmark, since we there are no such lists. But if I find one I am getting to the point where I am considering paying myself

  • It sounds like Psoriatic Arthritis from your description and tests are often negative in this. I would be pushing for a referral to a rheumatologist who knows about PSA.

    I have often found in the many years that I have had RA that professionals don't think that my joints are swollen when I know that they are compared with normal. So I now have photos of my joints when I DON'T think they are swollen and photos of them swollen so that they can compare the two - strangely now I get taken more seriously!

  • Great idea about the pictures. I actually have pics from a few months back and just taken new ones. There where some swelling just hard to see without the comaprison

  • Hi

    I was just like you and didn't show in bloods or anything I spent years un diagnosed as I didn't fit into their criteria for RA ! Like you no swollen fingers etc ! Prednisone helped so yes that shows there is some inflammatory thing going on . One thing I did have was bad knees , very bad . Scan after scan revealed OA so had an operation on my knee where they took a biopsy and it came back as RA ! And even then it was still along time before Rheumatology would listen to me . Eventually I got put on the right drugs but too late sadly n ended up with such a badly damaged knee I've just had to have knee replacment at 53. So my advice to you is keep on at them don't give up , get a second opinion and fight for your diagnosis and get on the right drugs . As getting on them and protecting your joints is so important. I wish you the best of luck . Hope I have not scared you but just want you to get the treatment you deserve .

    Hugs

    Denise x

  • No scared at all, or at least only a little. To be honest the more I read about PsA and/or RA I am more scared of what will happen if I don't get it diagnosed and starts treatment....

  • Have you considered Jointstat? I thing they call it something else in U.K. It is a test developed by Augurex. It is far more sensitive than RF or CCP. If it is RD that should tell you.

  • Have you considered getting genetic screening done?

  • Must admit I don't know much about genetic screening, what it can do, where to get it and what i costs. But maybe I should start to look into it.

  • Hi, my bloods were & still are borderline, not sure what that means but my rheumatologist has always treated my symptoms & not my blood results. I have sero-negative RD.

  • Thanks so much for all the thoughts and suggestion for me. It has been really helpfull. And I now have a few things to look into.

    I really appreciate all the support on this site, and especially suddenly not feeling like no one understand me or thinking that I am just making it up.

  • You have my commiserations, I suddenly started getting various pain issues and sudden collapse when my knees gave way about 4 years ago, it took 3 years of seeing various consultants who all came with another and different diagnosis that set me on my quest.

    I started my own research and my full medical history, the first part was totally missing from my medical files because it was never written on the cards, just the letters from my consultant, which had been removed and lost.

    So I started with my Osteo Arthritis, that had been diagnosed when I was 12 years old, worked forward with every disease I had ever had and what I had recently been diagnosed with.

    Suddenly everything fell into place, it wasn't OA when I was a child, but back then Arthritis was either RA or OA, I actually had JIA - Juvenile Idiopathic Arthritis.

    When I filled it all in the JIA, Psoriasis, Hayfever (yes that as well), Bursitis, Tendonitis, Osteopenia and fibromylgia then it returned only one conclusion, Enthesitis which is a little known or studied disease with only 2 specialist consultants in the UK who only deal in pediatrics, so of little use to me.

    I finally presented my 2 weeks, 280 hours+, of solid research, to my 4th rheumy consultant, she sat down and spent time reading it, then agreed with my conclusions, at last I actually have the cause confirmed and can proceed with treating the individual symptoms as it isn't curable but genetic (IHLA-B27) but not known in any of my family ancestry, except my siblings who all have various components but have not yet reached my age.

    I must add I have also seen 2 Osteo consultants, 2 physiotherapists and had 3 MRI, 3 ultrasound and countless X-rays, prior to the conclusion. If you add in the 2 Dupytrens operations on both hands, with consultant visists first then the NHS has expended a lot of time on me, some of it wasted if they had done the same research as me. I am not a consultant, doctor, medical researcher or nurse but I do know biology, how to undertake a methodical and thorough investigation and research my subject before making conclusions that can be challenged, authenticated facts cannot be refuted.

    The moral of this tome is not to ignore your past medical history when you are not getting a diagnosis, the consultants are only looking in the here, now and very rarely your past medical history, do your own research, avoiding the wiki and that type sites, stick to good research organisations and sources.

    You may very well find your own conclusions, but test them thoroughly as any good researcher would do and then present those findings to your consultant, if you have good bakup to your argument and conclusions then they may confirm what you have discovered.

    As with me, you might discover that there is no cure to what you have, but at least we know and that it is not some random collection of unrelated symptoms.

    Your consultants will now know and they can help in formulating a treatment regime including the pain clinic, as am I but actually for a not directly related prolapsed disk which has left me with a choice of injection for my S7 or middle back, not both :(

    Good luck

    Steve

  • Hi.

    Thanks for all your wonderful support and advice. I finally got my GP to give me a new referral to a rheumy. Hopefully I managed to find one this time who will really listen to me and not just go by blood test results.

    I firmly believe something is there, if I go below 7,5 mg prednisolon I get more pain and stiffness. So will stay on 7,5 mg daily until my appointment end of July

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