"It's all in your head"

vic1 · Newbie Alert Joined: 01 Dec 2003 Posts: 2

I am writing a book about lupus for Barnes and Noble that I hope will be of help to the newly diagnosed. I wonder if any of you felt, before you learned that you had lupus, or even now, that your symptoms were "all in your head." Did anyone ever tell you that you were a hypochondriac? I'd appreciate any stories you'd like to share. And, don't worry, I won't use any last names.

Thanks much,
Victoria
Smile

Saysusie · Posted: Mon Dec 01, 2003 3:51 pm Post subject:

Hi Victoria;
Fortunately, I was diagnosed by a doctor who had just recently returned from a LUPUS Seminar and who recognized my symptoms immediately.
However, there have been numerous members of the forum who have stated that they are dealing with doctors and family members who tell them that it is all in their heads.
Hopefully, they will respond to you Smile

Good Luck With Your Book!

Saysusie

batgirl

First let me say thank you for writing about lupus! The more information the better!

I have never been explicitly told that my symptoms are all in my head. But I have had doctors refuse to take my symptoms seriously. I exhibitied the classic- textbook malar rash for 4 years and went to numerous doctors and dermatologists who failed to diagnose me. The last dermatologist was convinced it was sebhorreic dermatitis and, because the rash didn’t improve, was also convinced that I wasn’t using the topical cream she prescribed. Years later, after my SLE diagnosis, when I showed one rheumatologist the rash (at which point it was bright red, cracked and covered fully half of my face), he turned me away, telling me that people would have to “get to know my personality instead”!
I’m not sure if this is the information you are asking for, and I didn’t mean to turn this into a doctor-rant because I’ve also had some excellent, warm, genius doctors to whom I owe everything. But I think that doctors (and people generally) tend to be under-aware of lupus considering its prevalence…maybe because lupus disproportionately affects women and minorities?
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wishing health and strength to all

kstan2222 · Newbie Alert Joined: 05 Dec 2003 Posts: 2

I was diagnosed and had very good doctors then moved and got a doctor who would walk in and spend 2 min's with me. He pretty much ignored anything I said then took me off my meds and said there was nothing wrong with me and I was probably just one of those people that got sick a lot. In my paperwork he put down that he thought my symptoms were somatic and not organic in nature. Basically saying it was all in my head. I even took my husband in thinking maybe he's respond to a man better. He basically ignored anything my husband had to say. We switched doctors and I am not getting diagnosed again.
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Kathy
Port Orchard, WA

lzycat · Newbie Alert Joined: 25 Jan 2004 Posts: 2

I had displayed so many unrelated symtoms, I knew I was a hypochrondriac. I even thought of having tee shirts made in different colors with H on the chest.

I started with the rash on my face, misdiagnosed as rosecea, a full 4 years before my lupus dx. I became so sun sensitive, that I couldn't go out at all without being so fatigued and sick to my stomach, I was miserable. Then I had recurring bouts of dizziness and numbess. I knew I must be nuts.

Finally I became so sick, my husband took me to the emergency room in March of 2001, bp 184/117. I was dx with stroke. The next day my bp was 92/54. They did ct scan, mri, mra: the whole nine yards along with blood work out the yazoo. They then decided it was ms and sent me home.

One week later I was back in the hospital, unable to balance and numbness on my left side.

MORE TESTS. I was so sick to my stomach, nothing would stay down so, of course, that meant being attached to George, the IV stand. I was miserable.

After several days those symptoms moderated and I was sent home again.

Then on a visit to my primary physician for a urinary tract infection, she went over all my tests, bloodword etc. and announced she was going to test me for lupus.

Well, I finally got a dx and name for my hypochondria.

Smile

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lzycat