Unexplained Pain, Fatigue and Mouth Ulcers
I can't say for sure when my lupus started.
What caused my lupus?
Personally, I think it was several years ago, but according to the doctors and my bloodwork, it was brought on by COVID. Apparently, they are finding that COVID is causing autoimmune disease in lots of people. Lucky me.
My fiance and I were building a snowman and suddenly I could barely move. I was severely fatigued, and hurt everywhere, from the first joint in my fingers, all the soft tissue, every joint in my body.
Before I could get into the house, I was crying in pain and barely able to move.
It was the 100-year storm in TX, but I told my bf I had to go to the hospital. There, it was packed with sick and people just wanting to get warm. They triaged me and took blood. I like everyone else waited.
Finally, about 3 hours later they called me back. The symptoms were severe unexplained pain and cramps in my legs, hands, and arms.
When the doctor realized who I was, it struck him..."oh, you just jumped way up in priority. You have a potassium level of 2!" In order to live your potassium needs to stay around 3.5-5. 2 is not life-sustaining, and they informed me I was lucky I made it to the ER alive.
Increased symptoms & a hospital stint
I was immediately admitted and spent the next 2 weeks in the hospital where they did eight different COVID Tests before they were convinced I was positive. I coded, being unable to breathe. I had a pulmonary embolism, numerous infections separate from the positive COVID.
After this stay, I was released. I was home for 3 days and was hot - sicker each day with the pain, headaches, and fatigue. All this time I had several ulcers in my mouth that no Drs paid any attention to me when I'd tell them. They were excruciating, keeping me from eating or drinking almost anything.
On day 3 at home, I told RS I had to go back. I couldn't take the pain.
It was then at a different hospital with a brand new doctor, that my blood work was studied in-depth, over 2 years.
Diangosed with lupus
"Your blood has been negative for the 2 years I studied it, up until the last 2 series of tests we did. I'm sorry, but you have the markers for lupus." I was started on prednisone and a host of other drugs, all of which caused side effects that my body does not handle well.
I was in the hospital for 5 more days, trying to get the symptoms to subside and pain under control.
At least now I had a diagnosis that we could work with.
All this time, my house was on the market and I was moving 1000 miles away, back to my hometown where my daughter demanded I return so that I'd have someone to watch over me.
How do I manage lupus now?
To this day, the severe symptoms return almost weekly.
When I finally relocated about 7 weeks ago of course I had to find a new Dr, who had to refer me to a rheumatologist, which was booked 8-10 weeks out! But if I could get there today, there had been a cancelation. Praise the Lord!
He ordered another battery of blood tests, and finally, someone looked in my mouth.
"Wow, those are very deep ulcers, but they are not like the typical Lupus ulcers. We will find out what's going on. Until then, stay on your meds."
The steroids made me eat everything in sight. They made my skin thinner than thin.
Just a slight bump makes a horrendous bruise or rips the skin and blood gushes.
The ulcers are still in my mouth. The fatigue is ridiculous. The sun is an absolute no-no. Next week I will find out what all the blood work says.
Till then, I do my best to not let everyone know how miserable I am.
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
How often does someone offer you unsolicited advice on your health?