Author Topic: Normal bloodwork vs Pain.  (Read 3411 times)

Shani

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Normal bloodwork vs Pain.
« on: January 10, 2011, 11:53:45 AM »
Hi everyone,

My bloodwork has been coming back normal recently and well 'fantastic' as Rheumy said today on the phone.

I was wondering if anyone else has normal bloodwork yet has so much pain in their joints, muscles, swellings of joints, inflammation etc.

Basically the bloodwork not reflecting how you feel.

I have heard a lot of people have normal bloodwork but they don't feel like it.
Or else bloodwork being very 'bad' and they feel actually ok or not too bad.

I find this all very confusing.


tired of it

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Re: Normal bloodwork vs Pain.
« Reply #1 on: January 10, 2011, 11:58:02 AM »
Again, were normal but suffering, bloodwork can be normal if what there looking for is normal, if its a basic bloodwork panel and it comes back normal, thats just saying your normal there, its not finding out what is causing the problem, its pretty difficult to get that AHA moment when we keep coming back normal,

susan

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Re: Normal bloodwork vs Pain.
« Reply #2 on: January 10, 2011, 01:46:24 PM »
Hi Shani,

I don't have an answer for you, but I experience the same thing. I look great on paper, but continue to have the usual---pain, fatigue, intermittent fever, very frequent colds, bladder infections.
I see the rheum. every 3 mos. & he monitors ESR, CRP, CBC. It doesn't make sense to me that my inflammatory markers are normal, but I remain symptomatic.
Time for me to ask the question!

I hope you are able to feel better soon.

Susan


dbab

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Re: Normal bloodwork vs Pain.
« Reply #3 on: January 10, 2011, 01:58:32 PM »
Same here Shani.  I'm really at a loss for why that is also.  My ESR has been normal for the past three or so times I have had my tests done (every three months) but my joints are really bad.  I'm going to ask my doc about this next time, don't know why I haven't before.

Carolina

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Re: Normal bloodwork vs Pain.
« Reply #4 on: January 10, 2011, 02:09:08 PM »
Oh Dear Shani!

My first rheumy (trained at YALE) bless her heart, said that showing negative was meaningless.  She diagnosed Sjogren's and treated my symptoms of the time, dry eyes and dry mouth.

9 years later I'm still negative for every single possible blood test.  Trust me I had them ALL last summer.

And the neuro says what ever I have is spinal compression (the numbness and such) and old age, and who knows?

I could smack him, he was very very supercilious and condescending.

However, I'm negative no doubt about it.

So I can't get a referral to a Rheumatologist!

But I have Salagen, and Nasonex, Cymbalta and Trileptal.   Soo, I have what I need to get by.  Along with a nasal spray, an eye spray and Ultra Systane, and a humidifier in the bedroom.

If I start falling down, or whatever, I guess I'll get reevaluated.

The treatments for most AI diseases are pretty serious and not always well tolerated.

I also have Interstitial Cystitis (which perhaps you have, inflammed bladder lining leading to multiple UTis and lots of pain).  But it doesn't have a blood marker, just shows up on a cystoscopy when the Urologist looks inside your bladder.

Sooooo, what can I say?   Clearly something is going on that doesn't show up on tests.   I makes no sense to me to account for my various symptoms with as many different diagnoses as symptoms.   But hey, i'm not in charge.  At least not of the diagnoses.

I know what's going on tho' and since I am truly old (68) I may just limp along sero negative until I die.

Which is really OK, too.

I'm pretty philosophical about it.

I KNOW many people want the sero positive diagnosis for validation.   To show to all the doubters and others who think it's all in their head.

I really don't think most people understand AI diseases anyway.

And I can't have what I can't have right now.

Sooooooo.

Stay tuned!

Keep us posted.

Kisses

Elaine

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Shani

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Re: Normal bloodwork vs Pain.
« Reply #5 on: January 10, 2011, 04:19:06 PM »
Thank you for your kind responses everyone, you're all sweethearts. :-*
Atleast I am not the only one, but it's all very strange.

There's not a lot of good doctors around it seems these days, Elaine.
But I'm glad you are atleast able to take care of everything at the moment  with the meds and all of that you take.

In my opinion AI diseases are one of the worst things ever.
It's always and always will be a long search to find the cause of certain symptoms sometimes.

I have heard about IC, I maybe should try and consult an Urologist some time.
Just the thought of having a Cystoscopy done doesn't sound very pleasant to me.

But we'll see how it goes, I am getting it checked up on first by my Gp or at the hospital no friday.
To see if the infection is gone or not.

And I am definitely having a chat with my Rheumy about treatments etc on my next appointment.  :-*

Carolina

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Re: Normal bloodwork vs Pain.
« Reply #6 on: January 10, 2011, 04:32:02 PM »
oh dear Shani,

The cystoscopy is done as an outpatient procedure.

The thing is this:  If you do have IC, there isn't a blessed thing you can do.

The one 'drug' is 95% ineffective and I became allergic to it.  It's called Elmiron which sounds like a bad country song title.

Otherwise you just know why you get all the UTI's.  And often take an antibiotic prophylactically until you really get rid of the infection for good.  At least for a while.

I exercise which really helps the back and abdominal pain.  Water aerobics, with mild stretching.  It seems the stretching helps some how.

There is an IC diet, but I don't think it makes a bit of difference for me.

Now IC can become very very serious, which is why it's good to know about.  I mean some people have so much pain and constant urination and infections that their quality of life is seriously compromised.

And you can end up needing surgery and even losing your bladder.  But that is worst case scenario.

The INTERESTING thing is that 50% of the people with Sjogren's develop IC, and often don't know, just think it's frequent UTIs.

And 50% of the people with IC go on to develop Sjogren's.

But of course I don't HAVE Sjogren's cause I'm sero negative.

Pout.     >:(

Keep us posted.

Kisses

Elaine
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flutterfly

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Re: Normal bloodwork vs Pain.
« Reply #7 on: January 10, 2011, 04:54:59 PM »
 :P  ME 2! ME 2!

I'm the healthiest lil' pixie on paper!
yet they seem ta be givin' me dx after seperate dx!

we's just SPECIAL that way dear1! or CHALLENGIN' is the newest shrug word i've heard!

talk ta ya later ※bright^eyes※!

~*flutterfly...markin' all pixie sisses bloodwork positive just ta mess w/docs! tehehe!
i promise i'll change it back b4 friday!*~

Patze

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Re: Normal bloodwork vs Pain.
« Reply #8 on: January 10, 2011, 07:32:57 PM »
Hi Shani,

Yep, me too - the Sero Negative Queen! ;) :D  And there are days where I hurt so bad that I could cry, but they frown on that in the office. :)

Unlike some of the others, my ESR is normally high these days, and the CRP is at high normal (usually a 9 or 10 with a scale of 2-10), while the CBC tends to be normal, ugh.

AI's drive me crazy as sometimes don't know if it's SJS, Hashimoto's, or what ever else is roaming my little old body.

Hang in there little one, and don't forget that I'm always sending you gentle and very soft

( ( ( H U G S ) ) )

Take extra special care of yourself -

Patze
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Sero Negative Queen

Sha

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Re: Normal bloodwork vs Pain.
« Reply #9 on: January 10, 2011, 07:41:58 PM »
Shani, My dear!! ;D

I do hope ya feel better soon!! My rheumy said: Yes! You can have negative across the board and  still have AI diseases...have it on tape!

Love ya...MAKE THEM LISTEN!

Sha

dbab

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Re: Normal bloodwork vs Pain.
« Reply #10 on: January 10, 2011, 08:13:20 PM »
I'm actually sero positive but it's the inflammatory markers that keep coming up in the normal range despite the awful pain I'm feeling.  Makes me wonder if the Prednisone can affect these results.  My doc always sends me my results and like you Shani, she says it all looks good.  She must think I'm a crazy person when I'm in her office complaining about my pain.  So frustrating. :(

Joe S.

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Re: Normal bloodwork vs Pain.
« Reply #11 on: January 10, 2011, 08:24:51 PM »
Don't forget your daily 8 oz of carrot juice and you dark cherries.
ALA and ALC help to reverse AI diseases and Neuropathy.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Lesleybird

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Re: Normal bloodwork vs Pain.
« Reply #12 on: January 10, 2011, 11:20:09 PM »
   Nerve pain caused by the Sjogren's does not show up on the blood work.  Neither does fatigue.               Lesley