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Lupus/Lupus a possibility for me?

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Question
Hi Carla,

Just recently just this week I have been struggling to go to work. I feel very physically tired and my legs especially. I don't even want to go out of bed lately. My legs feel very stiff and hurts to be on them, and I also have some back pain. Ever since February I had this retail job, and I always work 40 hours a week (Thurs-Mon 8hrs per day). I stand on my feet for all those hours (7 1/2hrs) just about. Maybe around 20min break sitting on a chair. On my days off (tues - wed) I have to do things (cleaning, shopping, etc.). That could be also the cause of all the pain (not having a break). At work I only sit down on my break, and stand all throughout the day. Since there's no way I could sit on a stool at work.

When I get home I barely have any energy to do the things I enjoy doing. And my body just wants me to lay down in bed it seems. My legs feel like they are Pulsing as I sit or lay down. I don't remember any of my previous jobs which made me feel like this. I know I didn't work as much as this one.

My husband sometimes says I might have Lupus, but I am not sure if I do. Maybe it is just from me standing all day how I feel. I am very unfamiliar with Lupus. Not sure you can identify what's wrong with me.

Thanks for your time,

Lisa

Answer
Hi Lisa!

What a strange coincidence that I should be the one to receive your question. I was working retail 5 days a week (I think my days off were sunday and tuesday or something odd like that- we were closed on sundays). Also standing up a lot, in dress shoes. It's not healthy!

I was fired from my retail job when I developed lupus and was diagnosed in 1993 (probably not legal to do that now). Some of my symptoms were the same as yours- the exhaustion, unexplained pain, everything being a struggle. However, those symptoms could also be attributed to a bunch of other things. Flu, chronic fatigue symdrome, lupus perhaps, yes- without some blood tests it's hard to tell.

Lupus, like most autoimmune diseases, is diagnosed using a combination of blood tests and symptoms. Back in my day (ha! meaning 1993), if you had 4 of the classic 11 lupus symptoms, they would diagnose you with lupus. These days, they seem to be more hesistant to give a lupus diagnosis, so they want you to have a positive "lupus blood test" even though there is no such thing as a specific test just for lupus. MS, yes. Lupus, no.
http://www.lupus.org/answers/entry/diagnosing-lupus

So, I would go get some bloodwork drawn. Your GP can do it. If you don't have a GP, go to a walk-in clinic, like I did, and tell them your symptoms, your concerns, and could you please be tested for lupus or any other autoimmune disease?

("lupus" tests are C4 reaction protein *or* ESR sed rate (both are measures of inflammation), creatinine, double-stranded DNA, and antibodies).


You may want to bring someone with you to your appointment. In my experience, when i'm not feeling well, I don't remember to mention some important things, and I don't always hear everything that's being said to me.

Best wishes-
Carla Ulbrich
The Singing Patient
http://www.thesingingpatient.com  

Lupus

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Carla Ulbrich

Expertise

I can answer questions such as "what is lupus?" (How common is it? Is it contagious? What are the symptoms? etc.). Also, I can answer questions such as "what are the available treatments for lupus?" (both standard and alternative). Really, I'll take almost any question on lupus, though. If I can't answer it, I'll be very surprised, but I'll also go find someone who can.

Experience

I've been living with lupus (SLE) since 1992. I've had three severe bouts with it, including symptoms such as kidney failure and stroke (if you can call having a stroke a "symptom"). I have completely regained my health, though I have to be mindful to take care of myself, lest I get sick again. I use both mainstream and alternative medicine, and have tried just about everything under the sun to alleviate symptoms. A lot of it worked.

Organizations
Lupus Foundation of America Association for Applied and Therapeutic Humor Toastmasters Folk Alliance

Publications
How Can You Not Laugh at a Time Like This? (Tell Me Press, pub.) What is Laughter Lupus Sundial Newsletter

Education/Credentials
BA in music (UNC-Greensboro)

Awards and Honors
Novelty Song of the Year, Just Plain Folk Awards Winner, South Florida Folk Festival Song Competition Lupus Foundation of America Seal of Approval (for book)

Past/Present Clients
Medicaid Conference Alaska Palliative Care Conference Right at Home Health Care SePHIMA Anritsu Club Med Nursing in Practice

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