Hello there to everyone. New here, but not new to lupus. Was dxed with lupus in 2000 by a dermatologist, whom I did not believe. He gave me a brochure on discoid lupus and I did not have lesions which looked as if I had been scalded. Then in October of 2001, I became severely ill and was dxed a 2nd time by a rheumatologist. This time, there were no doubts. He estimated at that time, I had lupus for approximately 13 years. This was the start of a horrible journey, of which I never thought I was strong enough to take.
I think my lupus was brought to the surface by mono. I had mono in 1987. I was treated for a sinus infection for 4 months. I became so sick, had to be hospitalized and that's when I was told I had mono and it was really bad. It took a good year to get well and after that, I always thought I had mono over and over. Everytime I got in the sun, I would break out in a rash all over like the measles and feel horrible for weeks. I began to believe I was allergic to the sun.
Then in 1992 my husband and I were painting the family room in our home and had onlyy painted about 1/2 of one wall when I suddenly became very sick. Thought surely I had been stricken with the flu as immediately I started having chills and ached all over. I told my hubbie I needed to lie down for a while, which I did. A couple of hours later, he checked on me and said my face was very red as a tomato. Wanting to take my temperature and see if I wanted something to drink, he woke me up. I did have a temp, don't remember what it was now, but this was my first major flare up. My joints felt as if a railroad spike was being driven into them. So much pain in my bones and the fatigue was a killer. I was sick for a month or more. Even though I never coughed or sneezed, didn't have a runny nose or anything else that would seem like I had the flu, the doctor said that's what it was.
After that episode, the same thing would happen every 3-4 months. I would always tell the doctor it felt like I had mono again, but without the sore throat. However after checking that a few times, he informed me I was not having mono this many times. He dxed me with fibromyalgia. I went to a support group for several months and realized I did not have what they did, thus the journey of going from one doctor to another. I finally went to a rheumatologist. He too, said it was fibromyalgia. Even with the rashes when I got in the sun, he still stuck with FMS. My flare ups were getting closer together and lasting longer. I was missing months of work at the time and I was becoming more and more frustrated.
One Saturday my husband & I had my son-in-law's jeep ( they had our van on a trip) and we went riding for hours with the top off. OMG, I thought I was going to die for sure. I had the worst rash ever and I hurt so bad, I had to go to the ER. There they gave me prednisone and asked if I had been seen by a rheumatologist and told them yes, I was under the care of one. Told them what his diagnosis was and they suggested I get another opinion. Of course I did, over and over and no one was helping. I did realize I could not be in the sun and just decided maybe I was allergic to the sun.
Then in 1999, a friend at work went home for Thanksgiving. When we returned to work, she told me it seemed I had a lot of symptoms like her sister and her sister had just been dxed with lupus. I immediately called my rheumy & made an appt. When I saw him & asked him to check me for lupus, he told me I did not have lupus and I needed to see a psychriatrist. He said it was all in my head. OMG, I was so angry. This was the same doc who had seen me come into his office in a wheel chair because there was no way I could stand. He had seen the malar rash and the other rashes on my body. He knew I had missed so much work I was at the point of losing my job, but yet this was what he said to me. Of course, I really lost it and let him have it. I told him I didn't have a problem seeing a psychriatrist, I rather liked them, but when they got my mind fixed, who was going to fix my pain and fatigue. I will not tell you how the rest of the conversation went, but he told me to leave his office.
Finally in June of 2000 after laying out by the pool, I became very sick and my family doc sent me to a dermatologist who immediately said I had lupus, but wanted to do some lab work. about 2 wks later, he told me the results, which was lupus. He gave me a brochure and a cream for the rash and told me I needed to see a rheumatologist. Told him I had seen one and also the rest of the story. He told me to find another one. I started reading the brochure which had a picture of someone on front which looked as if their face had been scalded. I did not look like this and decided he was wrong. I didn't know there was more than one kind of lupus.
I had to stop work in November of 2000. Could not keep going any longer. Unfortunately my husband had been involved in a head on collision in April of same year. He would be out of work for months after having major surgery. We decided to move to my home state of NC where all my family lived. The idea was as they put it, "they could help us, physically, emotionally and financially". So we hired a moving company and a few members of my family went down to SC to move us here. Big mistake. They have never helped us in any way.
I became the sickest I had ever been in October of 2001. I called my husband's doctor (he had severe osteoarthritis also and had a rheumatologist) and asked if he would see me. After telling them what was wrong they wanted me to come in the next day. He asked me had I ever heard of lupus and I was shocked. I told him about the dermatologist and the brochure. Then he explained there was more than one kind and he was pretty sure I had SLE. He did the lab work and took several x-rays. He put me on prednisone and wanted me back in 2 wks. I didn't make it that long. As soon as I started dropping the dosage of prednisone, I became sicker. He gave me a shot of solu-medrol and upped the dose of prednisone to 60mgs a day for 2 wks and then taper off by 5mgs every 3 days. He had told me some of my lab work was back and so far everything was positive for lupus. Said the rest would be back in a few more days, but he knew what it would be. This was the start of my worst nightmare.
It is a horrible disease, as you all know only to well. I started a local support group and kept it going for 2 yrs. It became to much. I started an online forum as well and kept it running for about 6 yrs and finally let someone else take it over.
So here I am. I believe we all need the support of others who understand this disease. You go through some really tough times. I have prayed to die and really meant it. I have been in and out of the hospital several times. I have taken all the meds except one and nothing helps. I have some loss of kidney function and some other problems now, but still here.
To make matters worse, there is a huge possibility that I may have MS and am scheduled to see the neuro on Nov 14th. Hoping that is not happening to me and trying to keep my chin up, but sure is hard. I know you don't have a choice and you will accept whatever is dealt, but seriously don't know how I can handle that now.
Look forward to chatting with you all and thanks for listening!