Tell us about your symptoms and treatment experience. Take our survey here.

Very Frustrated!!

Recently diagnosed with Lupus SLE. My primary doctor, whom I've seen for 8 years was really listening to me.

"There is something terribly wrong"

Suddenly I started feeling ALOT more tired than normal. I thought for several years that it was just part of getting older. I started noticing that I had significant weakness in my left arm. Both hands were severe pins, needles and numbness, and pain in my joints. I began walking with a walker because of the difficulty of standing up straight. My knees were hurting even to touch. My skin is so dry and covered in rashes that I should own stock in lotions. My eyes have constant bags of fluid under them and swelling that makes me look like a freak. I now can only leave the house to go to my doctor appointments and back to my primary for a follow up. I looked at her with tears in my eyes and I said, "There's something terribly wrong with me. My body is failing me.". She immediately ordered a bunch of different tests.

"Lupus? What is that?"

A month later she said I have Lupus. Lupus?? What is that? So after I got home, I immediately researched this thing she called Lupus. Beginning to understand a little and after reading some other stories, I began to feel like oh that's why I've been feeling like this.
On to a rheumatologist and to a nephrologist. I'm in stage 3A kidney failure so I was taken off of the only pain medication that I take ( ibuprofen) because it is what is causing my chronic kidney disease. On to the rheumatologist, more testing. Now I'm prescribed Hydroxyochloriquine for the rest of my life. Also Prednisone temporarily in hopes that the Hydroxyochloriquine will kick in and help me to just feel better. after three days, wow, I was starting to feel better. I could actually get out of bed and do some laundry. I was able to sweep the floors. After doing those two things of course I had to rest for a while. But the fact that I was getting out of bed and doing something gave me hope.

"How do I get my life back?"

After one month, I return to the rheumatologist, who then takes me off of the prednisone. After three days, I was back in bed again. One month later, I return to the rheumatologist who says my blood counts are improving. This shows that the Hydroxyochloriquine is working. She then tells me that she will see me in six months. I felt dismissed. The title of my story is "Very Frustrated". The reason I am very frustrated is because after everything that I’ve been through, all the medicines that I’ve been taking, all the medicines that have been taken from me, all the diagnoses, all the doctors, I am still experiencing 80% of the symptoms that I had in the beginning. Where do I go from here? How do I get better? How do I get my life back? Needless to say I am still very frustrated.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America Survey yet?