when your blood tests seem normal, but your body does NOT feel that way!

699 Views 16 Replies 13 Participants Last post by Lily, Jul 5, 2009

ATS

Discussion Starter · Mar 18, 2009

hi,
I have had, in the past 18 years... several times where i was SURE i was having a flare, malar rash, exhaustion, night sweats, chills, sores in my mouth and nose... and then when i go to the rheumy almost all of my blood tests are normal! has this happened to anyone else or is my body just insane and playing tricks on me!
it always makes me feel weird like i am making a BIG deal out of nothing and being a whiner because my blood is 'normal' so obviously i can't be that sick

-amanda

1 - 17 of 17 Posts

hattycat

· #2 · Mar 18, 2009

it happens to me all the time. I feel terrible but my bloods are normally normal :|

Katharine

· #3 · Mar 18, 2009

I think that many of us agree that the bloods are often "behind" the symptoms, they don't co-incide perfectly and sometimes not at all.

Thankfully mine do occasionally make a show to "prove" that I am not making things up...

Katharine

Maia

· #4 · Mar 18, 2009

I hear you!

My inflammatory markers (CRP & ESR) are always textbook normal even while in a very obvious flare. Usually my c4 complements are low though to "back me up".

Many doctors will only assess for disease activity with things like DsDNA or the inflammatory markers. That said, the best doctors will rely on what a patient reports more so than any markers in the blood.

I am convinced that sometimes... a regular virus will feel like a flare but under those circumstances I'm only sick for about 3-7 days and then I get back to my baseline level of symptoms... or the virus/bacterial infection kicks off a more serious flare that can last several weeks to several months.

Nutty

· #5 · Mar 18, 2009

That happened to me a while ago. I had the worst case of pericarditis. I couldn't move my arms 2 inches without being in agony. They had my prednisone up to 80 mg and it still wasn't controlling the inflammation. I eventually ended up in the hospital, but all my blood work was fine. Thankfully, my rheumy doesn't rely on blood work alone. A couple of weeks later, inflammation showed up in my ESR and I'm not sure what else, but at least I didn't feel like I was crazy anymore.

Annette

Sage Hen

· #6 · Mar 18, 2009

This is very unfortunate for us, and those not yet diagnosed. It results in so much more suffering..

I think it is very common.

Sandy

ATS

Discussion Starter · #7 · Mar 20, 2009

as much as a hate that other people go through it, i have to be honest and say i'm a little relieved i am not the only person with lupus that goes through this madness =[
it got to the point in the past year where i started wondering, 'do i even really have lupus?!?!?!" because i'd have the rash, be exhausted, dragging my legs around.... and normal bloodwork! i've been starting to feel like my doctor thinks i'm insane, but that's probably all in my head. that said, thank you everyone for sharing your thoughts and stories, i really appreciate it. it alleviated my nighttime internal debate about whether or not i'm going nuts.

xo a

oesa

· #8 · Mar 21, 2009

Count me in there as well. My only abnormal lab results at the moment are albumin (low) and significant proteinuria, which adds up to active nephritis of some description - everything else I have recent results for (sed rate, ANA, hemoglobin, CRP, complement levels, creatinine, RF) are all normal/negative. I clearly have active disease though, so the bloods aren't the only story!

Lisa

ATS

Discussion Starter · #9 · Mar 22, 2009

this board is making me feel much more sane! i love it here

ellie99

· #10 · Apr 11, 2009

Hiya,

I have found this one of the most exaserbating problems, I have obivous joint problems and thank god my rhumey has always just treated me, even when my bloods are always negative, it really does make you feel like a head case, rotten disease, however, hang on in there, because something will show up in the long run, I had every blood test under the sun, all of which are always negative, then out of the blue the rhumey did an anti dna which I was gob-smacked when it came out positive. I've now started with the rashes...legs, shoulders and slightly on face so will have something else to show him when I see him next week......what ever you do...dont let it get you down......I was begining to think it was all in my head/wish the pain was too.....then a little ray of belief turned up.....

Sending you lots of hugs and know how you feels,

Ellie

ldshrubb

· #11 · Apr 29, 2009

Hooray, me too! You feel awful, look worse, yet your blood says liar liar pants on fire! I know how bad it feels to be made to think you are going mad, but we can be that way together! x

mooks

· #12 · Apr 29, 2009

Hey totally the same. Mine rarely correlate! However this time my esr is high for once and my wbc and hb is low! it gets to the point when you are pleased when somethings wrong with the tests..which is even more crazy!! But its just nice to have evidence of how you are feeling! xxxxxxxxxxx

Jencg

· #13 · Apr 29, 2009

Gosh, I am not alone. I think after all this time I have been very fortunate to find a rheumy who is prepared to diagnose regardless of the blood test results.

This forum has been such a help to me.

Thanks all.

Jen

Gerri54

· #14 · May 3, 2009

Here is my symptoms
- ESR and CRP elevated
- RF 15 (elevated)
- Vitamin D insufficient
- just diagnose with Celiac
- have visual signs of connective tissue disorder (on fingers)
- small amount paricardia (sp) around heart
- lung damage - scars - mild COPD
- elevated liver enzymes
- butterfly rash off and on
- DH skin rash (pimples - sore - red - water filled)
- sun caused rash all over body - only out 5 minutes in sun
- on vitamin b12
- photosenitivity
- sores off and on in mouth
- ANA 1:40
- HLA B27+
- severe allergies to sulfa, sulfites, next to no tolerance to sulfates, sulfur and derivatives
- unable to take Vitamin D causes breathing problems
- diagnosed with osteopenia
- high blood pressure (controlled by medication)
- blood in urine ongoing for years
- DsDNA never tested
- stomach swollen all the time
- always much pain
- lots neurological stuff going on
- purpura marks which I have pictures of

I have not been diagnosed with lupus. I am diagnosed with Celiac, Sjorgrens (diagnosed through medical history), HLAB27+ (for AS), Vitiligo, Psoriasis and I was told I have other autoimmune diseases (just no name).

I see my Rheumy in August - she deals with Lupus, RA, connective tissue disorder, and Psoriasis, maybe I will finally get some answers.

Going crazy - I have many signs of lupus - but no diagnoses

Hugs

Gerri

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Lily

· #15 · Jul 4, 2009

Hi Gerri,

Have they tried you on the additive free vitamin D? Many of the formulations have lactose etc in them and my doc steered clear of those.

love
Lily

Gerri54

· #16 · Jul 4, 2009

Hi Lily

Do you have a name for the "additive free vitamin D".

Also I have to correct a couple things in my list.

1. lung damage - scars - severe ongoing bronchitis - I have 30% chance of developing severe COPD.

2. DsDNA never tested - I was tested it came back high at 36.1 (intermediate - or low level) (1-15).

Also my NaturalPath (a family doctor also but not mine), said he has to get my gut problems undercontrol because of my Lupus.

Now just have to wait for my formal diagnoses in August when I see my Rheumy.

Hugs

Gerri

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Lily

· #17 · Jul 5, 2009

Hi Gerri,

Ostelin, not sure if you can get them where you are, you should be able to, or something similar at least.
Free from gluten, sugar, starch, lactose, yeast, and artificial flavours.

love
Lily

1 - 17 of 17 Posts

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