Wednesday, November 10, 2010

One of the Most Frustrating things about having Lupus

Let me just start this post by saying my Rhuemy & PCP are AMAZING. This post stems from issues with specialist.
The first most frusting things is when I am dismissed. In August I was really, really sick. I spent days in bed, a trip to the ER and trip after trip to the doctor for tests and IV fluids. Both my normal doctors were on vacation but I saw a new family doctor who didn't dismiss me, I was amazed. I know my body better than the average person. I know when I have a fever and I know when it's not Lupus. After a few weeks I went to a GI who did more tests and I learned that everything was "fine". So there it was "It's Lupus".

It is really frustrating. Now I am dealing with new symptoms. I am dizzy all the time, my core temptature has dropped to 94.5* and these headaches are INSANE. But it's Lupus.

The dizzyiness makes me so sick. walking down the hall is intersting, I sometimes wonder if people think I'm drunk. But of course it is blown off, I have Lupus therefore they can't help me, unless I want to take steriods and steriods don't work.

The core tempature thing is really interesting. I didn't know that it WAS lupus related. I had never heard of this side effect, but it really sucks. Frist of all I'm cold all the time! When I get home from work I usually take a burning shower just to warm my bones & joints up. then I crawl into bed under 5 or 6 blankets and a heating pad just to warm up. This is also an issue when I go to the doctors & they ask if I have had a fever. I know when I have a fever, if I'm "normal" they think nothing of it. to me 98.6* means I am clamy and sick. So if I am asked if I have had a fever I say "yes, but I don't know what it is because I don't take it, I just know when I have a fever". So now to find a cure for being cold, because nothing is more miserable than spending my day shivering or in so much pain from my cold, cold bones.

So I guess I just need to learn that most things are "just Lupus". But what if something isn't "Just Lupus"? what do I do then?


Katyann said...

I'm always very cold too. I have experienced the core temperature drops and the dizzyness. During the summer I was flat on my back for a little over a week with a very low temperature and dizzyness. I wasn't even able to make it down the hall to the kitchen. Of course all of my test results came back normal too, so the doctors pointed their finger at lupus. Luckily whatever it was that made me cold and dizzy went away. Other than my normal amount of freezing, I haven't had a problem since. I too generally have a low core temperature to begin with, but during the week of trouble this summer it was down to 92 degrees!

TammyJ said...

Omg!! Thank you! I feel cold constantly, and I feel feverish at 98.6. My " normal" temp is 96. It's frustrating to try and explain this to a new doctor or one that isn't well versed in Lupus related symptoms. Thank you at least I don't feel so alone or crazy now!