Lupus...

[MsKandice01]

Anyone have any experience with it? I'm going through some testing right now but I'm losing a lot of protein in my urine and all of my other symptoms (skin rash, achy joints, debilitating fatigue, difficulty thinking clearly and remembering things) definitely point to lupus. For those of you who have it or know someone who does, how much has it affected you or them? Have they been able to work long-term after getting the diagnosis? Right now, I'm so tired all the time that it's really hard for me to get through the day at work, no matter how much sleep I've had. I'm talking about eyes gritty and burning, eyelids heavy, almost nauseous kind of tired. If I don't get some help and soon, I don't know if I'll be able to keep this up for much longer without at least taking some time off. Between working, being in school and being a mom to a 5-year-old, I'm barely hanging on here.

[Redstone]

1. Oh, Christ, MsK, I wish I had some advice, but I don't. Only good wishes.

Redstone

[MsKandice01]

3. Thanks, Redstone...

BTW, long time no see. It's been a while. I hope all is well with you.

[some guy]

2. I'm sorry, I don't.

I don't have any experience with lupus. I'm glad you're getting tested.

I hope everything turns out well for you, and you start to feel more rested, and have energy.

:hug:

[MsKandice01]

4. Thank you...

I'm really looking forward to the time when I don't feel like I've been up for 48 hours. This is getting really old.

I truly appreciate your kind words. :)

[flvegan]

5. I had a coworker with lupus.

Middle aged, female, hispanic. She had her bad days, but she had mostly (as I can recall JUST from work hours) good days. She was a real go-getter, took care of her job, two kids and her house by herself. She did complain of being "worn out" quite a bit, but I've heard many a single parent say the same.

She was diagnosed around 4 years ago, I think. I have no idea what kind of treatment she's getting.

I hope it's NOT lupus, and the docs come to a better, more simply treated diagnosis.

[darkstar]

6. I just got orders for a test yesterday

Same thing here...sort of.

Extreme fatigue, bad memory and the bleary, gritty eyes. Some stink pee that my wife always says means I don't get enough H20. Face rash, but not typical I don't think. I've been thinking all along this was all sleep related from nerve pain down my leg, up my back, etc., i.e. no real sound sleep for weeks now.

Is it like MS in that folks flare with heat? (This is my third--but worst--summer of feeling like this.) And does nerve pain associate with it?

My doc said likely not Lupus, but asked about my family history, said lets do a test anyhow, etc. Scary even at that degree.

Sincere best of luck to you.


:hug:

[elleng]

7. Check out

Chronic Health Conditions group,

http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=317

and good luck.

[SPKrazy]

8. 7 Years Ago, To Add To My Hypochondriacal Nature

my doctor thought I might have Lupus. I was losing protein, he had done a 24 hour urine for something else and it had shown too much protein. The strange thing is that it was repeated and the same thing showed up. regular Urinalysis didn't show that. However, went to the Nephrologist and he poo poo'ed the finding and said that I'd have to be losing way more than I was and to not worry about it unless I started losing a lot more. Funny or not so funny, I have all of those symptoms to some degree. The rash on my face that they tell me is eczema, okay good. Achy joints which is just getting older, arthritis. Fatigue which is depression. Not thinking clearly and remembering things which is more of the same.

So I really just try to block it out of my mind, I don't believe I have it. If I do, I'm not sure I want to know at this point.

Oh, the 24 hour urine was looking for catecholamines and cortisol. Cortisol also was high and the results went to the Endocrinologist who said they weren't high enough. So, my symptoms were all presumed to be psychosomatic related to anxiety and depression and probably some relationship to a one year anniversary of my mother's diagnosis of cancer, having turned 40, and who knows what else.

I'm hoping for depression being correct. The meds have helped tremendously. Eladyl helps the face rash. Lexapro helps the fatigue and thinking issues. Anxiety as well. Klonipin also helps that. As for the joint pain, nothing helps that much.

Hope it all comes out negative. There are many variations of the illness, from very damaging to barely symptomatic it seems.

:hug:

[crimsonblue]

9. it's never lupus

at least, according to House.

[clovis29]

12. I never understood that n/t

[vixengrl]

10. There's a few things your symptoms suggest--

fibromyalgia, Epstein-Barr, Lyme (you just don't hear about this one anymore, I wonder why it isn't in vogue?) besides lupus. I know a little about autoimmune disorders--my dad has rhuematoid arthritis, and although I'm scared to death to get tested, I probably have a genetic tendency for it (My joints are already pretty creaky, I get fatigue and mentally, I think I zone-out from too much tiredness, not enough "me"-time, and just plain "sick of consistent achiness". But also, I used to be a bit athletic, so I could just have plain old osteo, and be tired because frankly--I do a lot.

I think the main thing to do is get the diagnosis--a lot of things might get tested, and a lot of auto-immune disorders have similar or overlapping symptoms, so it might take a while to be sure just what you have. I remember about ten-twelve years ago, they thought my dad had Lyme, because he worked outdoors. After two knee replacements and massive swelling and stiffness, they realized he had arthritis. Which in his case also has digestive components--because autoimmune disorders are diverse like that. So a second opinion is not bad.

I would suggest finding a support group on-line once you have an idea what you are dealing with. It's a good way to share ideas and stories with people who have the same thing. Although it is difficult, sometimes you also need to look at your schedule, and see where you can take your own time-outs--schedule time for yourself, to deal with your fatigue and pain--whether through yoga or meditation, or just walking or whetever--to spend the time on yourself you might need. When you have a chronic condition, sometimes you make deals with yourself just to get through the day--so promise yourself you will deal with your fatigue positively. Rest when needed--and tend to what you can, when you can.

Once you have a diagnosis, pay attention to your diet. A lot of these disorders have a nutritional component--and there might be ways to eat more health-consciously--like more fish and vegetables, or more fiber. Less red meat, dairy, refined flour.

However it goes, good luck--even a chronic disorder can be manageable, and you can still find time to do many of the things you want to do. The first big step is knowing what you are dealing with--after that, dealing with it is a matter of patience and experience and trying different things.

[Dangerously Amused]

11. Will PM you.

:hug: