Normal inflammatory markers - this is getting boring

So no matter how swollen my joints my inflammatory makers are always normal. My consultant understands this. It is as it is and one look at me is enough to tell you, you can't rely on blood tests alone. However I find new GP's a nightmare. I had to phone for my blood results today to check whether I could start the oral steroids the consultant prescribed plus carry on with my methotrexate. The GP on the phone sounded confused why was I on any of these drugs and why had I been prescribed steroids. My bloods were all absolutely normal they show no signs of any disease of any kind. Had to explain that's because you hadn't done my anti ccp whichever would have shown and also my CRP is no reflection of my disease. He sounded dubious and then said he'd never heard of the fact that you could have serious inflammation but it not show up.

I feel I am always having to justify myself to everyone. I can be extremely ill (last two weeks severe nausea, swelling, fatigue) but I can see in people faces/voices I'm not believed because my bloods are normal.

Last week I went in to the rheumy nurse. My toes were unbearable and I could tell very swollen. She looked and said they were normal, no swelling yer hello I know what my toes look like normally and that isn't it. Consultant came in looked and said, oh they're swollen aren't they. Letter that's gone from the nurse to my GP..says toes normal no swelling FFS.

Yesterday saw OT. She thought I looked so ill she called the nurse. Nurse said I was a problem patient because I reacted to the meds they've tried and anywayI had chosen to go back on methought try it again so effectively my fault I'm ill. Actually consultant and the other nurse wouldn't let me take Lefludomide so I was left with no alternative as I wasn't offered anything else.

Occy health consultant signed me off work said I needed to get some control over my RA before I can come back. Went to first of a six week hospital run course today and made to feel by the health professionals there that I was giving in and playing on it as I just didn't want to go to work. It wasn't even my decision it was the occy health to sign me off. I felt like saying okay so would you be happy to work if you can't turn the steering wheel of your car, you are sick every five minutes and can't walk properly

Any of this sound familiar to anyone.....rant over

10 Replies

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  • I'm not quite an incoherent as this. It's the damn predictive text!

  • Are you seronegative like me because my bloods are always showing normal but I have RAand OA and am on Benepali (Bisomar) and mtx , I know how you feel because that's what I was like 3 years ago it's like banging your head against the wall and know one listens to you, it took 1 appointment I had 2 years ago when my wife broke down in front off the consultant that she started to take note. So don't give up keep fighting and if you don't get anywhere ask your go for a referel to another Rheumy consultant xxx

  • I'm anti ccp positive but RF negative. Funnily enough the one person who supports me and is absolutely adamant I have very active RA is my consultant. She has been brilliant

  • From my experience RA Consultants really understand RA...& having specialised in it are interested in all its facets.....most GP's don't understand......but most won't admit it.

    I don't think there is much time devoted to RA in med school & on the whole the only RA patients a med student would see would be on an orthopaedic ward having surgery, which might lead them to an interest in orthopaedics, but not necessarily RA.

  • Well she's the most important person so it doesn't matter about the rest

  • Isn't great when the left and right hands don't know what the other are doing!

    Jacqui

  • Oh Frankie, I hear your frustration and I was feeling it with you. Firstly, it's not uncommon when your blood test results don't match the actual disease activity. That's why it's important to remember that it's one part of the clinical picture. I do appreciate why you feel why you so though, especially if your GP doesn't seem to get it.

    If it helps, it might be worth asking to record your appointments and then you can seek clarity if the letter says something different. Unfortunately, some doctors and nurses aren't very good at writing decent letters that accurately reflect what has happened in the appointment. To be balanced, some are very good but it's no help to the patient when they're not useful letters.

    You don't sound well enough to be at work, to be honest. I expect you do know that. Please try not to worry what other people may or may not think. With the best will in the world, you may be a doctor but if you haven't been through the ups and downs of having a disease like this, you don't really know. However, we know and we understand. It's the invisibility and then when the visible things e.g. blood test results don't show what we need them to, it makes us feel bad.

    Not everyone knows but you are entitled to a second opinion on the NHS and this might be a route that you decided to go down.

    Take care of yourself.

  • Blood test results from one person cannot easily be compared with someone else. RA diagnosis has always been problematic because of this. My own preference is to put more weigh on subjective assessments.

  • How dare a nurse tell a patient that they are a PROBLEM patient! Outrageous!

  • It's hard to justify your concerns with a fool. So why waste your time? It is a bloody shame you are being harrassed like this.

    My first rheumy wouldn't even sign my paperwork from work because he said I had a mild case of RA. My second rheumy couldn't believe how my RA was allowed to wreak havoc while under the care of the 1st rheumy....such a disgrace.

    i suggest that you should go to an other doctor. You need to be heard.

    I wish you well

    Sue

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