Having lupus for 25 years the blood work occasionally comes out negative
for lupus.  Doctor thinks it might be because  of the prednisone  
plaquinil  etc  that change the lab findings.  Had to have a shoulder
replacement done because of too many injections of cortisone into the
left shoulder that destroyed the bone.  Hope your wife is staying out
of the sun and that she thinks about having  UV filters put on all of
the windows in the house and car.  Sending healthy thoughts to both
of you                  ruth

.........................<snip>...........
"whozitsdad" <whozitsdad@gmail.com> wrote in message
I'd be curious to hear back from anyone, but those
specifically experiencing severe pain and misleading blood work.
Regards,
TC Mergl
............</snip>............................

I was sorry to read your wife's story and thought maybe by relating mine it could help her to see how lupus works over time....

I have had lupus since I was a kid about age 12; history took the diagnosing rheumy back to that date during the clinical evaluation.... and my labs during the years of teenager to just before menopause have always been 'grossly positive' in all areas...i.e.: ANA, Rheumatoid factor, ESR, and all the rest that are done when ill....
now that I am just nicely past menopause at age 54,
I have just been dx'd within the past half year, with a shoulder that has a ripped tendon, partial AC joint separation, an irregular biceps tendon, fluid in the joint from the inflammation and 'tendonosis' (BTW, I had to look that up to find out it is the results of ongoing damage to the tendons)....
I went to the doctor for extreme pain, in fact it was nausea inducing pain from this shoulder, and she immediately had X-rays and an ultrasound ordered with the results showing the above related damage;
and so now I am waiting to see an orthopedic surgeon.....in May!...
<and the wheels go so slow...!>

I have never had shoulder problems nor have I had steroid injections... I do take 5 mg. daily of pred and I suspect as do they, that it has contributed to the problem along with the lupus activity when I was younger;
Presently as well, during the past 2 years, I started experiencing first cardiac failure and then renal failure, both ongoing, that they have also put the cause down to 'past lupus activity damage'... like the shoulder...
My point to all this is that
throughout this period of time, 2 years or more, I have had extreme pain as well as I have had fatigue like never before and yet, like your wife.....

    ..all my labs are   'negative'!

Now this is a first for me and a good thing I do  believe .... if it is the damage from the past and not present activity then IMO, I have a better chance of getting back on my feet (I hope!);
whereas if it was ongoing lupus activity I wouldn't stand a chance with all of the heart, kidneys and now my shoulder problems all needing ongoing attention with many new meds, tests and the rest of involvement from the 3 new specialists on board that goes on!

Hopefully this will give you some insight to how this illness works over the very many years I have had it;
I do hope so.
I, just like your wife, have many good meds for pain and inflammation but with my shoulder?...none of them controlled that pain! nothing, even the breakthrough tablets I have on hand for this type of scenario, would not hold back that type of pain!
Perhaps shoulder pain is that much more severe than other pains? I have had spinal surgeries and a whole list of other ops and this one, the shoulder 'problem' has been the most aggravating for me..
..then again, maybe because I am older I just am not dealing with it as well as I might have in younger days?

I don't have answers in this post,  
just a similar situation that perhaps your wife can relate to and then know she is not alone....almost always someone on this NG will post and relate a common story that may help.
Good luck to you both!
hugs from me,
Shelagh
http://clik.to/lupus

The one thing I KNOW is hack on test results. No one needs a number to
describe how they feel, that's what we have language skills for. If
your wife says she hurts, then she hurts. Lupus isn't trackable by
tests. 5% of Lupies will never have a positive test, but that doesn't
mean they don't suffer. Even experts will tell you the best they can
do is make an educated guess according to numbers. Medicine isn't a
science, it's a practice. As patients we have to hold on to that and
know that a little fight is worth it. Doctors can't yet jump into our
brains and bodies to see and feel what we do.

Shoulder pain can be a whole host of things. Women especially get
refered pain in their shoulders. It's pretty common that an enlarged
spleen or other abdominal pain will present like shoulder pain. I know
wacky women... See if the doctor won't order an abdominal CT and/or
ultrasound. See if everything is ok there. Even pericarditis and
pleurisy (super common) can show first as shoulder pain. And treating
the shoulder won't really help whatever organ is moaning for
attention. I hope that didn't scare you at all. But the good news is
that her body is still sending signals and asking for help. And you
guys are pursuing it. I have every confidence it'll work out for you.