Inflammatory Markers satisfactory but I'm not happy?

Mat48

As some of you may recall I had my inflammatory markers taken on Friday prior to starting Prednisolone. Just phoned for results and they appear to be down on last ones - basically normal to marginally raised. The GP had written "satisfactory" on them.

It sounds pathetic but I'm so dismayed - was really hoping that they would match the soaring pain levels and weird swelling in my fingers and knuckles - not to mention shoulders and wrists, knees and toes. They were twice what they are now when all this kicked off last Spring and the pain wasnt nearly as bad nor was the swelling visible.

Now I'm surely not going to be believed when I finally get to see rheumy - sometime this month? I know others here have had this problem too so but surely my ESR and CRP levels can't have gone down when I'm only taking ibuprofen and pain meds - unless my brain is sending the wrong signals to my joints or something?! Could this all be in my head I'm wondering?
I can feel years of uncertainty stretching ahead of me and I can't see how I'll cope. Sorry to be so useless and impatient. Nothing I can do but wait .. And wait .. And wait - I do know this really. :sad: Mat

traluvie

Mat,

I know it is easier said than done luvie but please do not worry,,
Remember me telling you my ESR and CRP were normal?.. i was terrified i wouldn't be believed as the pain was horrendous..Luckily i was..
I hope when you see the specialist that they can understand and know what you are going through, which i am sure they will.You seem like a confident person so i am sure you will have no problem relaying whats going on and saying that something needs to be done and that you can't carry on like this..
Sending you positive vibes and hugs (((((x)))))

theresa4

My bloodwork is a joke

My infammatory markers are always low
if I have no pain ie. steroid my CRP is <5 my ESR <10

when no steroid and Im swollen etc... My CRP is between 7 & 12

My ESR is 32-40

They are classed as slightly raised Ive seen figures on here in 80's and 100's and feel like a fake. My rheumy said to me that my bloods seem to like hiding how Im feeling but there was a direct correlation between MY risen markers and how I was feeling to MY low markers during steroid treatment and how I was feeling. The reference ranges cannot be for everyone but are generally a good indication.
My thyroid is the same according to the bloods when it was low it was borderline ish except my T3 level which was out of whack. Yet my periods became irregular, hair fell out and I gained weight in a rapid fashion. I could tell when my treatment wasnt working before the bloods came back my GP is great and very well informed and trusts me to know my body. My thyroid has been stable for years and when my gp says its time for a check up test I tell him its fine then the results come back and he says so it is. On occasions I had to go in wehen my symptoms kicked up Id say I need my thyroid checking and guess what..... I was right...

Theresa

valval

last year both knees were very swollen got rhummy nurse to get me blood test and inflation levels were normal how the heck can that be knees were masive but it was rested them took meds and they settled wish i had shown her when she gave me the bloods form but was in to much pain to bother. am going threw a flare at moment not much swelling but pain up and stiffness arther a strange beast val

dreamdaisy

I've had brilliant ESR and CRP since beginning the humira but the pain levels have never reflected that and why would they? Bloods don't tell the whole story, I don't take much notice of my results any more as what I feel bears no relation to what they say. DD

salamander

When I first got ill two years ago I couldn't walk, get myself out of a chair or bed or on/off the loo. My inflammatory markers were only mildly raised. However, when I went to my first rheumy appointment, the consultant took one look at me and admitted me to hospital where I stayed for 10 days.

Do not worry!

Mat48

Thanks all.You are becoming like a second family and have brought tears of comfort and relief to my eyes - and I'm not actually a soppy soul at all really! Second anniversary of my mum's sudden death on Saturday and then in a month, eighth of my dad's sudden death so it really means a lot to me to have you lot telling me stories of similar woe re bloods. I had an email form head physio today telling me that she wouldn't be able to attend my rheumy apt end of this month but she would try her best to make sure I'm on the list - which "as you can imagine is very oversubscribed to".

Apparently rheumy wants to see me in the flesh as opposed to a telemed interview on video so that's something I suppose! I'm now actually hoping to be so bad when I come off this pred in a week that I have to be craned into see him! Daft bugger aint I?! :oops:
Mat xx

suzygirl

Mat, just chipping in to agree with the others expereinces. Bloods don't always correlate to how we feel. Sometimes it takes a while for the bloods to match the symptoms. A good rheumy knows this and takes symptoms into account as well.

Mat48

Thanks. I'll just have to hope he is a good rheumy then :???:

Feeling very low just now -perhaps its the Pred or way the day is panning out or the weather here. Who knows. I like a good fight if I feel I'm in the right but my energy is running out and I'm still getting a lot of pain in my hands - mainly knuckles today. Trouble is I don't really believe I've got this thing until someone says I have so I keep ignoring the advice about pacing things, not using joints when they are sore etc. It's like an act of rebellion against what my my body is telling me which is daft - but if the medical profession rely only on bloods then I feel I should too and that means... there's nothing wrong with me except in my head really?! :shock:

So why does it all hurt so much that I can't do normal things like write and drive anymore then? Maybe I need to see a shrink?!

Hope that rheumy is a bit more with it than me anyhow.
Mat x