Re: Negative! Negative! Negative! (plus an update on me)

[Guest guest]

When you find the answer for this, please let me know. I am one of the

healthiest folks around on paper- negative everything most of the time, only

" minor elevations " the rest of the time. The only thing that has always tested

positive is the anti ccp (I think?). I went for two years being told by my

Internist that I was completely healthy and could not have RA because I was

Rheumatoid Factor negative- then I found out that it isn't very uncommon at all.

For an update on my condition, I am in my second month of pain and misery.

Rheumy thought maybe I had " developed a dependence on steroids " (not her fault

of course- though she's been giving me depo medrol injections for three years-

but caused by the physician who treated me for pneumonia earlier this year),

prescribed 5mg of oral prednisone and told me to come back in 3 months.

Less stiffness on the steroids, same generalized muscular and joint pain. Also a

lot of weakness in my large muscles. And of course the exhaustion so pervasive

that I have become a little afraid of driving for fear that I'll fall asleep on

the road. The rheumy apparently has no clue- her exact phrase was " what are we

going to do with you? " . Found out the cortisol test came back at 4.4, which I

was told was normal, so it's back to not knowing what is going on, I guess. I

personally suspect fibromyalgia, but I have a strong suspicion that this doctor

is not much of a believer in that disorder as she just about ties herself in

knots to avoid discussing it. All other tests were also normal.

Is there a scientific name for " feel absolutely terrible despite what all the

blood tests indicate " disorder? If so, that's what I have- in spades.

Oh well, I'm off to drag my healthy body to the hot tub. I've decided that I

need to grow gills as I am spending half my life in the water these days ;-)

~Marie

[Guest guest]

and group;

Does your rheumy acknowledge fibromyalgia. Some rheumys don't

believe in Fibro. I have fibro and I take Lyrcia which takes all my

fibro pain away. I have RA also but it wasnt positive till just a

few years ago.

I was miserable like you too. Still am, but I get a break with other

medicine like humira injections. I pray you get this straighten

out. People suffering like this is so wrong. I would rather be in a

stupor than in horrific pain. All the technology today and people

have to suffer so bad. I can't understand it. God Bless

gentle hugs

Clora

**************************************************************

>

> When you find the answer for this, please let me know. I am one of

the healthiest folks around on paper- negative everything most of the

time, only " minor elevations " the rest of the time. The only thing

that has always tested positive is the anti ccp (I think?). I went

for two years being told by my Internist that I was completely

healthy and could not have RA because I was Rheumatoid Factor

negative- then I found out that it isn't very uncommon at all.

>

> For an update on my condition, I am in my second month of pain and

misery. Rheumy thought maybe I had " developed a dependence on

steroids " (not her fault of course- though she's been giving me depo

medrol injections for three years- but caused by the physician who

treated me for pneumonia earlier this year), prescribed 5mg of oral

prednisone and told me to come back in 3 months.

>

> Less stiffness on the steroids, same generalized muscular and joint

pain. Also a lot of weakness in my large muscles. And of course the

exhaustion so pervasive that I have become a little afraid of driving

for fear that I'll fall asleep on the road. The rheumy apparently has

no clue- her exact phrase was " what are we going to do with you? " .

Found out the cortisol test came back at 4.4, which I was told was

normal, so it's back to not knowing what is going on, I guess. I

personally suspect fibromyalgia, but I have a strong suspicion that

this doctor is not much of a believer in that disorder as she just

about ties herself in knots to avoid discussing it. All other tests

were also normal.

>

> Is there a scientific name for " feel absolutely terrible despite

what all the blood tests indicate " disorder? If so, that's what I

have- in spades.

>

> Oh well, I'm off to drag my healthy body to the hot tub. I've

decided that I need to grow gills as I am spending half my life in

the water these days ;-)

>

> ~Marie

>

>