Dr's say my CRP levels seem fine, so why am I in so much pain?

[Mel_]

My knees, hips and spine all really hurt, and to top it all my insides are starting to be painful too? MRI scan is booked for march 10th but I then have to wait until May to see the consultant again to discuss the results. Why am I still hurting so much if as the Dr say the mtx is working and the CRP is at acceptable levels?

[Hidden]

Is the CRP the only inflammatory marker you get given Mel? At my request my GP took my inflam markers CRP and ESR almost 3 weeks ago and then again this Monday - but just the ESR this time. I asked her why they set more store by the ESR - when LynW wrote a blog about these markers saying that the CRP was better for RA?

My GP said that they felt that the ESR was more reliable for people with Rheumatoid Diseases because it showed some of the inflammatory history whereas the CRP was more on the spot. She said that in our practice the ESR is the more commonly used of the two. My CRP was 13 which she described as almost within normal range but my ESR was 40 and this week 36 which she said indicated that the MTX wasn't yet working at controlling the disease.

She also told me that they didn't usually take the inflammatory markers in this practice because people often found it distressing when the bloods didn't reflect the pain they were experiencing or were tempted to come off their medications if they felt everything was okay - ie they'd been cured.

So my GPs would say that if you are still in pain then the MTX isn't yet working and would write to your rheumy regardless of the blood results. Bloods only tell some of the story as even my rheumy said. I think you should go back to your GP or your rheumy nurse and insist you want to see the consultant far sooner because you are in pain. TTx

[Mel_ in reply to Hidden]

Thank you for your great replies on my question and my rant of a blog. I know it is horrid to say I feel comforted by the fact I'm not alone in my thoughts and feelings, but hopefully you'll know what I mean! As Ella says below I think I need to come back onto the consultants radar a bit and start making a pain of myself! It must be a worry for you appying for a job where you will have to fulfil appointments when you will have no idea how you will be feeling; but very well done to you for being strong and doing so. Mel x

[Ella32]

Hi Mel

I have my bloods taken every month, but it is not the only thing my GP/Rhumy goes on. Symptoms are as important. On some occasions my CRP is above 100 yet i feel reletivly ok, on others my CRP is under 30 and my joints etc are sooooooooooooooooo painful...go figure??? TT is right, your CRP is an immediate snapshot of how you are at the exact moment your bloods are taken, so what you need to be looking for is a trend... eg is it going down slowly of spiking up and down, or is it increasing.

Also you defo need this MRI as this can detect most problems.

I know it makes you feel horrible but try to make a bit of a nusence of yourself at your GP's as this may bring your date forward a bit

Hope this helps

Ella x

[Mel_ in reply to Ella32]

Thanks Ella, the odd thing is I can go for a blood test feeling really poorly and hurting a lot and the results seem to come back ok - I'm actually starting to feel as though the consultants thinks I'm making it all up It's funny when I'm feeling ok I can really fight my corner but when I feel really low and hurting a lot I shrink into myself and don't seem to say boo to anyone (which is obviously just the time when I need to be standing up for myself) I've not been logging on much recently as by the time my boys are in bed I'm too tired to do anything myself! Take care x

[tinkerbelle71 in reply to Mel_]

Hi Mel and everyone on this forum, I've only just found this website and reading your blogs has made me feel so much better. I've had RA for 6 years had 3 knee replacements and am struggling massively with my feet, I've just seen my consultant, first time since I've been at this hospital (5yrs) and he was awful really made me feel like I was making it all up too. So thank you for your blogs, especially the blood test ones, as I thought these results were all the doctors went on. To find other sufferers on here is great, for talking issues through and to know we are not alone. Thank you

[Ella32]

Mel

That is just when you should be doing things for yourself! I read your blog about benefits too, the system is crap i agree. I also don't work and couldn't imagine doing so and i only have 2 little ones to deal with 50% of the time (they are with their mum the other 50%).

You are soooooooooooo mot making it up and i certainly don't think you are either (if that helps?)

Have a nice as poss evening

Ella xx

[sciqueen]

Hi

I think they are all inflammatory markers. The last time they checked my esr, mine was 45, but they don't check every blood test. My crp is 3 and within the normal range. But I still have aches & pains from time to time, so what difference does all these measurement make????

My ra still rares its ugly head from time to time to remind me that I still have it.

Thanks god for mtx as I think I would be alot worse without it!

Sci x

[Beth58]

Hi Mel, my consultant never reads to much into the ESR and CRP as so many other conditions can affect the results; Anemia, kidney problems. infection/virus such as colds/flu.

He usually bases his treatment on how I'm feeling, how much pain I have and how it affects my daily life, blood results are always a secondary measure of how treatment is going.

Beth x

[TIPPER40]

Hi I have jusr been on the phone to the rehmo nurse, been at doctors on monday he said my ESR was well controlled last few months it has been 14, 21, 17, but when i went for bloods i was wasnt too well, totaly drained, joints sore but not swollen, totally down and was near crying, doc wasnt really interested when i went back for these results, yesterday i had had enough felt totally rock bottom also had a cramoing feeling all over, nurse was fine she is going to get back to me today so fingers crossed when she speaks to my consultant today xxxx hope ev1 is feeling better soon xxx

[Hidden]

This disease is systemic so a good GP and rheumy should not rely too much on blood results surely? Perhaps ultrasound and MRI scans are more reliable if they can't simply take our word for what we are feeling though?

[TIPPER40]

hi heard back from my Rehmo nurse this afternoon Mel and I am the same at the moment hun, she spoke to my consultant and i told her about my markers as prev explained in my comment above, she explained that no doctor can go on markers are they are not always reliable, i have a appointment with her next week cause they are concerned it may be my MTX Im having a reaction to, but has also stated that my GP should never just look at my bloods and go by them as im in a lot of pain, my doc told me my ESR was excellent at 21 and im in remission, the pain was so bad the other day that the girls on here persuaded me to call rhemo nurse and im so glad i did, so glad I did now, because consultant says i done best thing, told him about my ERS rate and he just laughed and said that some patients come in with ESR even lower but joints are inflamed or just severe pain, they are only a slight guide and in RA patients any pain should always be investigated along with how the patient is coping and feeling, he also thinks that im flaring too, so altough my ESR is down and doing its job acording to bloods its not doing its reall job as the doc says it employed to do, if u know what i mean, so glad i called rhemo nurse now as new GP kept fobbing me of, infact as i have said in prev blogs he told me to more or less told me to come to terms with my RA, bit late since i been dignosed for quite a few year, numpty that he is.... hope all my new friends here are having a relaxing evening xxxx

[Mel_ in reply to TIPPER40]

sorry you have been going through so much pain, but at least your consulatnt sounds on the ball, well done you for following it through and speaking to your nurse. As you say it sounds like we are in a very familar situation at the moment. Last night my knees were double the size at it looked like I had a tennis ball stcking out the back of them too! Will just have to wait and see what the MRI scan shows. x

[helixhelix in reply to TIPPER40]

Really pleased that they're taking you seriously. Hope they do proper review of your meds next week, and you get something that suits you better and tackles the inflammation. Your GP should be pushed in a puddle. Px

[sonny1]

Have you have blood tests for ANA (anti nuclear antibodies), this can sometimes show if something else is going on? If not ask your gp, it costs the NHS a bit more than the usual lab tests, but hey ho, we need to know these things. Hope you feel better soon.