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Lupus Anyone?
10 Replies
tnichel - November 20

I'll try to keep this brief. Do you have lupus sle and if so, can you describe it? I've think I'm in a flare. I thought I didn't have it but my rheumy told me last month I did even if it was a mild case. I had just finished battling an upper respiratory infection that took 2 months and 3 antibiotics to get over.

Despite going back to the pain mgmt. doc I was still having a lot of pain, new pain, and new symptoms. The pains are ten times more intense than my fibro flares. A lot of heavy chest when breathing, stabbing pains when breathing, debilitating body cramps that cause me to freeze up til it passes. Also, headaches that aren't quite headaches...sharp pains that move all around my head, bloody noses, blood in mucus, racing heart, feeling pulse in limbs, beet red hands. I think I'm caring water weight too and maybe some inflamation but it's not visible. I can feel it in my arms and see swelling only in my right hand. I swole up to the size of a 6 months pregnat woman. My underarms hurt. And sometimes the limb pains feel like someone's drilling into my bones. And the body aches are very deep like to the bone.

I know lupus affects everyone differently. I haven't had much luck finding a good lupus forum. My rheumy started me on a therapeutic dose of prednisone on tuesday. He only did that b/c I threw a hissy fit and told him something has to change b/c I've been sick all year long. I've been having to take naps in my car on lunch breaks, I'm showing up to work later and later, staying in bed on my days off, basically back sliding.

When I called to make the appt. his assistant told me I had high bacteria levels in my urine, my white blood cell count was low (usually is) and so was my hemaglobin. She wanted to know if I had any kidney symptoms or an uti. But my sed rate was normal. She was concerned about all of this and the doc just blew it off. She also said my levels were off when I came in June. He has never once told me my lab and urine work came back showing I would be heading to a flare. Most of what I've researched said the docs should warn you of impending flares after checking lab results. Yes, I'm finding a new doc but I just need to talk to someone who has lupus and is familiar with treatments.

I stopped taking plaquenil b/c of stomach problems but the rheumy says I have to go back on it. I just started back but apparently medical boards are in agreement it's the minimal required treatment for lupus. Also, finally this sharp stabbing abdominal pain under my left rib cage actually happened while I was in his office. MIRACLE OF ALL MIRACLES!!!! He check my abdomen and said I should get a ct scan. I've had all of that and my other docs found nothing. But I feel better b/c he actually saw how much pain it causes and all the other pains have been just as intense.

PLEASE HELP!!!! I'm so frustrated with docs. I hate to say it but I always seem to have a problem with male docs minus my pain mgmt. doc.

 

tnichel - November 20

sed rate 10
crp 0.9
blood 12.6 and 38.2
red count is good

hope someone understand this and can help!

 

lorieholtz - November 20

i'm sorry i dont' have the answer for u if i did then i would have the answer for myself, but just let met say that ur not alone and we care about u. it's such a struggle omg yes. one thing that i've not been cked for and that is lupus but have been told it needs to be done. my situation with drs have now put me in a place where i can no longer trust anyone, and it has gone to the extreme. but i know i've got to fight its somewhere here in my soul and i'll find it and will. i feel so bad for u and i know ur pain. i too just went to a new dr and one of my symptoms happened right there... he was so concerned.none of us want these things to happen but i think if it happens where a dr can see it .. it really helps ur cause. i wish i had more answers for u but like u i'm looking for answers as well. but i will say these ppl here are so supportive and never judgemental, u will never find a better place for support.
lorie

 

ptalana - November 20

I'm so sorry that you are going thru such a horrible time right now. I just recently had the blood test done for Lupus it came back negative.
It seemed that every specialist that I had seen for the past 2yrs all stated that I had Lupus, but for whatever reason it took me this long to have the blood test done.
I wish I had some answers for you, but I can totally relate to the frustration you feel with docs. I've had many horrible experiences with docs myself as I'm sure many of us have!!!!
And any time you need to talk and or vent we're here for you.
I wish you better days, Patty

 

tnichel - November 21

Hi guys. Thanks for responding.Just knowing I'm not the only one in this boat helps. You can test negative for lupus and still have it though so don't give up. I just found the most comprehensive list of lupus symptoms I've ever seen on the web. And it's provided by the government. I'll try to post the site but you know how this site is. I put in dots and wrote slash for /. You can e-mail me for the link too.

2 forward slashes then regular 3 w's-dot-womenshealth-dot-gov forward slash faq forward slash lupus-dot-cfm

My doc made it sound like you have to have visible swelling and inflamation but that's not true. Also sometime only part of your body may swell. For me it's always my right thumb.

 

tnichel - November 21

Uh, forgot to list my e-mail. Someone please return my brain to the lost and found. ; )
t_nichel. It's a yahoo account.

 

axxie - November 25

Gees, I'm so sorry to hear you have this dreaded disease, it's not enough to just have fibro and everything else it comes with.

I know I don't have it, I went and looked at the symptoms, and know that my neurologist did do the test.

Hope you feel better and that the doctor has made a mistake. :) keep you in my prayers.....

 

belle1329 - November 25

I always feel like Im swollen, I say to people I feel like im on steroids, very buff , muscular.
Is this the inflamation you mean. I do also have alot of inflamation in my elbow, fingers and knee.
Knee is fine at the moment, but everyonce in awhile, I cant walk, it wont bend and feels like water is here and swollen. My elbow has been this way for about a month, maybe more.My knees did it very often for a couple of months, and seem better now. I know Ive gained weight, but it feels weird like Im all swollen. Im very gassy and bloated in the stomach. I do have IBS ? My arms and legs feel heavy . Just wondering, as I just put everything off as FM, and try to ignore it and take advil. Thanks :)

 

tnichel - November 27

Thanks Axxie. It's been a crazy 3 months for me. My ANA panel came back sky high with my ssa being 539. It's supposed to be .8 so no wonder I've been dragging the past few months. Good news though. A fellow journalist gave me the name of her rheumy so maybe this doc will be more receptive and help me get things under control.

Belle. I describe it as feeling like someone is drilling into your bones. The aches are so deep in the bones and muscles. Sometimes it feels like when you lay in your bed after spending all day in the pool. I feel like I'm floating b/c my muscles are so worn out but it's not a good feeling. I don't have the hallmark signs of sle lupus. The rash that's supposed to be on your nose and cheeks is on my chest. Only my right hand and under my arms get swollen in a flare. But I can feel the inflammation in my forearms. No visible swelling per say (Not common for sle patients) but I get very stiff. The joint pain is horrendous. I also have debilitating stabbing pains throughout my body that cause me to double over in pain (the scariest part to me). I just have to wait til it passes. And the exhaustion doesn't come close to fibro exhaustion. I can barely get up out of bed and move around. My hair starts falling out, my chest itches like crazy, horrible headaches, no appetitie and I have a lot of breathing pains, heavy chest, etc.

I think I carry a lot of water weight. But the doc said the bloating isn't related to the lupus. Friends will look at pictures and ask if I lost weight. I didn't realize it at first but now I can see proof in the pics. I have several different pants sizes in my closet for the big bloat days that make me look 6-8 months pregnant (no exaggeration). I have ibs too.

Thanks for looking at this guys. And please send any other fms/lupus sufferers this way. I really want to discuss this with someone who is dealing with both. I feel lost right now. Just figuring it out on my own right now until I get a 2nd opinion.

Also, if you tested negative for sle...that may not necessarily be right. Lupus like FMS is different for everyone. My diagnosis (a supposedly mild case that doesn't feel so mild) was a process of elimination. My doc also thinks I have sjogren's but I don't see any evidence of that. If you do have some of the common symptoms make sure you talk to your doctor. Unlike fibro...every lupus flare (esp. sle) can cause damage to your organs if not treated. Most are placed on prednisone when a flare first pops up.


I hope everyone had a wonderful Thanksgiving even if you are sick like me. I've given up on being well for the holidays.

 

tnichel - December 17

This is my post from last month.

 

tnichel - December 28

my original post. I updated it to make it easier to find

 

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