At first I told the doc everything because I felt like the more he knew, the better. So I told him everything.
A few docs down the line I began to recognize a particular pattern in sequence of events during a doctor;s visit.
Me: "Blah blah blah and I get all blah blah blah and then blah happens and I feel all baffled!"
Doc: Eyes glaze over and take on a far away look, but not just any far away gaze.
He or she begins to nod head as if they suddenly understand, but you know from their face, they don’t. Instead, you get the feeling your picture will be the next one hanging in the physicians Most Bizarre Crazy Patients Hall of Fame.
Then they say, "Now I know what your problem is: It is anxiety! That is all. Blah blah blah blah blah…good bye!"
Then he or she leaves, papers settling uneasily to the floor where your hopes for relief lie in a heap.
So I would like to share our "bizarre " symptoms so that we will know we are not crazy and so that next time we see a doc we will be able to report the symptoms with more confidence, more knowledge about what can happen when a person has Lupus.
Maybe we can compile our won list and compare; I will list mine in the order they seemed to occur…more or less.
- Got a crazy lump in my belly that no one could figure out. After numerous tests and the removal of my gal bladder, they concluded it was just stress causing IBS
note: this doesn’t count childhood rheumatic fever, unexplained thyroid issues, unequally dilated pupils and horrible horrible migraines.’
- it got harder and harder to breathe and move. I felt like my blood was dirty and lungs felt frothy. My face was turning bright red for no reason
my migraines were getting much much worse and lasting for three weeks at a time. I told the docs that oxygen helped. They dazed g lazily at me and said "You have anxiety.“
I had chest pain too
Finally Getting My Diagnosis! (Like getting a diploma)
But then the docs still did the stare when I told them things like
"I sweat and itch like crazy, but only at night; I wake up feeling like I smoked a million cigarettes, and I smell like cat pee when I go out into the sun and now I think I’m bleeding internally! My veins hurt! they swell and bulge at night and burn so mush I wish I could just …scream! My Headache is not the same as is was before! I feel like I am on fire–like my brain is on fire! I feel like a hot knife is stabbing me in the head. And now I can’t stay awake when I need to: I get all dizzy and my eyes roll up and back and it looks like I am drunk and then when I go to sleep I stop breathing and my dog, (Buddy-the-aspirin-giver) jumps on me at night to make me breathe again.And I keep getting my words wrong. If I want a dish I say fish or if I need a car I say jar.”
“Other than that, crock, I mean Doc, I am fine. How are you?”
sorry about the typos…my fingers are sausages and my eye sight is cloudy tonight, my feet are swollen and feel like two ton weights at the bottom of my legs…and on top of that my sense of humor is making me giddy.
I am going to go put my o2 on and go to bed before my anxiety gets any worse. (haha?)
I search for appropriate words too, is that a sign of a flare and I can not remember meanings of certain words or sometimes (my daughter says) I slur my words mid sentence. Its not a stroke, I checked, so I guess its Lupus then??
I think it must be since so many of us lupites have trouble with it. everything I have read says that Lupus can inflame the brain as well as any other part of the body.
I think I was having lupus in my brain for a long time before being diagnosed because oth the change in migraines and the word thing started happening too. Now my eye hand coordination ds off and I notibe it at church when i try to make the sign of the cross and then at home when i try to typr. for expample---i won;t spell check and you can see all the mistakes I make even when I am staring right at the keyboard.
Wow I can totally relate! I hate really getting into symptoms with docs because I’m convinced they’re looking at me like I’m nuts. I can add some weird symptoms to your list tho…
- feels like a bad ear infection n just keeps coming back. Ear is also thumping (not in sync with heartbeat). Sometimes it’s so loud and annoying I can’t concentrate. (5 million diff tests)
- pulsing/vibrating left temple. (They say migraines…I say uhmmmm…no)
- hives for no reason ( can u take a pic…no they’re gone already)
4)definitely the word finding issues. Dr is sending me for neuropsychological testing. Has anyone else had that? (Very hard to find and harder to get Appt.)
- by the end of the day my face turns bright red …like its gonna explode ( just oh so attractive when going out to dinner with hubby or something)
I’m sure there are more but the fog rolled in and still on first cup of coffee haha.
I can relate, too. We have so many issues going on it can make you feel insane, as well as the way some doctors look at you. One doc says it could be caused by lupus, next doc says, “Nah, it’s just stress. Relax.”. We come here for validation, confirmation, affirmation. When a doctor says “it” has nothing to do with lupus I’ll come here and find 30 other people here complaining of the same issue. Doesn’t really matter to me that docs can’t agree. I live in this body, not them. They don’t have lupus because if they did they would understand. Did you read the link our moderator John posted? It’s kind of long, but worth it. Explains a lot.
Here it is: Link @ : http://more-distractible.org/2010/07/14/a-letter-to-patients-with-c…
I'm a little embarrassed to tell my doc about my memory/cognition problems. I mean, I'm 25 and I feel like I'm senile. I'm also embarrassed to tell him about my nighttime hot flashes where my palms, feet, and armpits get sweaty. It's just weird, especially since he's a male, but if it'll help me get that diagnosis and relief, I'd rather be embarrassed and feel silly.