All in my head?

Ok, so I've been off work for 10 weeks, I had the first set of bloods (nothing except raised CRP and - I found out on Wednesday - a 'weakly positive' ANA), I've been prodded by the physio, called a 'mystery' by the Occupational Health doctor, and now I've been to the rheumatologist. He found no visible swelling, although all of my joints bar a couple were tender, but is now sending me for an ultrasound scan on my joints and has taken more blood.

The thing is, the longer this goes on without any corroborating test evidence, the more I'm forced to question if I'm imagining the pain. True, I don't really like my job right now, and this has helped me to escape from the twisted politics for a while, but is that really enough incentive for my brain to fabricate pain to the extent that I'm forced to stay off work and minimise activities that I do enjoy? I know I should be hoping that this is nothing serious, and most of me is still doing that, but a little piece of me actually wants them to find something; not because I want to be ill, but because I need some justification now - something that will stop me from fearing that I've just created this in my own head.

Can anyone else relate to this state of mind?

14 Replies

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  • Sooty, before i was diagnosed the politics in my office were dreadful and because i didn't join in, my manager undermined and bullied me. These random pains started and like you i thought i was developing these pains as some sort of release from the mental torture at work.

    It took another six months to get a diagnosis and i only went to the gp maybe twice in that time for steroid injections and they took blood but i honestly felt i was doing this to myself.

    I was pleased to get a diagnosis of RA not because i wanted it but it meant that it wasn't all in my head.

    Though i do believe that the stress of work triggered the ra.

    That was a bit jumbled but hopefully of some help.

  • Similar situation for me - I've only been in management for 3 years, and haven't yet become the management clone that I was expected to be, so my boss (and those who aspire to greater things) tend to find any excuse to throw trouble my way! And I'm rubbish at dodging it, so I'm usually knee-deep. I have heard theories that - as you and Summer suggested - stress can trigger many serious illnesses, and it does seem to have some evidence behind it.

    Hope you're having a better time of it at work now.

    Sara xx

  • Hi Sooty B,

    I was diagnosed 3 years ago and prior to that I only had joint pain no 'visible' swelling, but jumping around from joint to joint, particularly my shoulder initially.

    You have a raised CRP, and that is a marker for inflammation as is ESR, so maybe won't be R.A., but sounds like it is. I am sure when RA Cons gets results of additional blood tests he will make a diagnosis.

    Try not to worry, and just get pain under control for the moment. It is interesting as your work seems to be a stress mmmm... previous discussions re stress triggering RA but thats another topic.

    An anti inflammatory & pain killers, until you hear from Rheumatologist, have faith and the gang on here are always available if your anxious, angry or sad or of course happy.

    Don't be afraid just take each day as it comes, so what if you have to take a bit of time off work, I took four months when I was diagnosed and I needed that time, you will know when the time is right to go back (or not).

    Its not in your head, (i Hope) very doubtful, get some funny dvds, or old ERs & find something relaxing, and put those feet up until you know whats going on. Your health is your wealth and only you can put yourself first.

    Don't tell me you have a gaggle of little ones to look after :) Have you?

    Good Luck, its a strange world we live in strangers consoling strangers. Strange, but good strange if you know what I mean.

    Gina.

  • Thanks, Gina - no little ones to look after (unless my boyfriend counts, which I fear he might do sometimes!), so I'm lucky enough to be able to rest more than most!

    Sara xx

  • I sometimes think some thing stressful like work can trigger an attach of RA?

  • Completely relate Sooty. I've been where you are for the past year and explored every avenue before and since the rheumy said "inconclusive" back in July. My GP was convinced it was RA at the start because I had a low positive rheumatoid factor and raised inflammatory markers but even he seemed to be implying that I might be unwittingly exagerating it all for a while when I had absolutely no sign at all of the pain in my joints.

    But then at last my fingers and knuckles became visibly inflamed. But in the months prior to my hands seeming to visibly errup I've been through times of thinking it was all down to being menopausal (especially when all pain disappeared when i had a one off period) and other times of believing it to be post viral and then finally thinking all down to my pre-existing hyperthyroid problems - none of which came up as being the cause of these symptoms finally.

    A week ago last Thursday I was so stressed out at the prospect of the rheumy saying that it was all still inconclusive or in my head that I almost froze the morning of this second appointment when i got in to see him. But he just studied my very stiff and swollen finger joints and the two stiffest fingers and my raised knuckles and found a slightly inflamed knee and foot and said that bloods may not indicate any problems but they don't tell the whole story and anyway he could see visible inflammation this time so diagnosed me with sero negative RA and I've just started MTX.

    I felt enormous relief when I came out of there - felt like dancing a jig (would have put on splints first though!) but this past year has definitely been the worst period of my life. Whoever thought i could be so glad to be diagnosed with RA - how daft is that? But in my book having the symptoms without the label and going unmedicated when you feel horrible things going on in your body is really the hardest thing of all because you feel like everyone is thinking you are imagining it and that in turn sends you into a Hitchcock movie- like state of high anxiety and stress.

    Please believe me when I say that this thing will out itself sooner or later and they will see it for themselves so you just have to use this time to check other avenues and try and self medicate through diet and exercise. No one will think you are imagining it because you are not. You sound very sane and level headed and you just want to know what is going on and get appropriate treatment and that sounds very rational to me. Hang in there and good luck.

    Tilda xx

    Ps What is a weakly positive ANA?

  • ANA is Antinuclear Antibody - it's used to test for SLE and other conditions with similar symptoms. My GP didn't mention it to me, but must have included it in the referral letter he sent to the rheumatologist.

    Sara xx

  • Hi

    I was diagnosed fairly quickly and yes I was glad for the diagnosis as at least I knew what was the problem, even though I did not understand what ra was or entailed.

    Like you it meant I was not imaging it and the pain I experienced was real and not caused by me thinking about it or phsychosomatic.

    Hang in there you will eventually get the diagnosis also you could be sero negative, I think it may take longer for them to confirm the diagnosis if you are sero negative. Another possibility is that you may have a different form or combination of inflammatory arthritis. I am sure they will get to the bottom of it in the end.

    Hoping you get the diagnosis that you need

    take care

    Scixxx

  • Hi all,

    Thanks for your lovely comments - since signing up here, I've certainly felt a lot more human! It's odd, really, as I never really understood about chronic pain before this, but now I see what people mean about growing accustomed to a certain level of pain, and it's only when it worsens that you register it.

    I'm trying to be pragmatic about the whole thing, really, and just run with it, but it doesn't stop my mind from getting carried away sometimes and racing ahead of the professionals! Thanks, everyone, for helping to stop that happening!

    Sara xx

  • So am I right in thinking you don't yet know if you have a positive rheumatoid factor or a positive anti-CCP? As I've already said I had a low positive RFactor but a negative anti ccp and that was why the rheumy diagnosed me with sero-negative RA. If I have any advice it is that you believe in yourself and trust your body/ symptoms and be as assertive as you can with your GP and with the rheumatologist at your next consultation - or before if things worsen and you get anything visible to show.

    I was very proactive and sent photos to my rheumy via our head physio and i also did a lot of research into all types of inflammatory arthritis and other related condiitons. Both men knew I was well-informed about what was happening to me. Also t I knew what the rheumy was looking for and pre-empted this by emailing this chief physio (who is our equivalent of a rheumatoid nurse) with photos of my knees and fingers when they started to show themselves. I also showed my GP these photos and he was quite certain that showing the consultant these images would help him diagnose me.

    If you try to remain quiet and stoical then your doctors will just assume your problems have gone away so please don't let them forget about you unless of course the symptoms do completely disappear - as I really hope they do for your sake. As I'm sure you know RA is much more treatable if caught early and being pushy really does help - especially if the blood results and ultrasound scans are negative. If come through positive they will take you seriously anyway I'm sure. Good luck. Tilda x

  • Hi Tilda,

    Yes, you're quite correct - my first bloods were only a week after the symptoms kicked off, and I've had no more done until the rheumatologist requested them on Wednesday. So, until all that is back, I really have no idea what my body is playing at!

    I must admit, I'm usually better at stoical than pushy, but my boyfriend and Mum are worried, so I'm pushier for their sakes as well as my own!

    I'm glad you finally got a diagnosis - hopefully, this means you're getting the right treatment sorted for you now.

    Sara xx

  • Yes I hope I am and tomorrow I get my first blood test for MTX and physio apt straight after so I feel loads better mentally for feeling that I'm getting support and monitoring. I too was stoical until all this kicked off - but it wasn't just the pain but the fact that I'm an artist and could hardly get any work done despite having lots of projects and stuff lined up when it all kicked off that helped me to be pushy.

    Also encouragement from others on here and on the arthritis care website really helped me to fight my corner when I felt I was starting to slip through the medical net. Sleep well and keep strong. I've been where you are now and it's hard - even if pain continues to get worse for me I still feel this limbo period was the hardest thing to bear. Hope these aren't famous last words though! Tilda x

  • Sara, i was in your position earlier this year. Already had ra,but the pain i was suffering was unbearable and it wasn't just in the joints affected by the ra. I was crying with the pain when my rheumy rang up as i'd been pestering everyone looking after me. Turns out i have fibromyalgia as well. Fibro is chronic pain, which means another set of drugs. I thought like you do that i'm going crazy and at the rate i was in they would section me.

    My advise to you is keep pushing until you get a diagnosis, even if you have to make a nuisance of yourself. You will get there in the end so don't give up.

    The people on here was a godsend when i was rough in the summer,they kept me going until i got a result.

    sylvi. xxx

  • I felt exactly the same until I got diagnosed.

    I too was going through a bad time at work we had redundancy going on and out off three off us from our office we were told one was going and one would be made part time, my pains started to worsen around this time I did ignore them for a while. I was sacred off losing my job, I was the only one in our office who wasn't made redundant or part time but in a way this was worse as the other two were friends and suddenly I became the enemy! Not good to work in!

    Then I felt worse when it hit that hard I had to take a few months off.

    Hang in there x and take care x x

    Julie x x

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