I am a new member. Over 12 years ago I began having extreme leg and arm burning, weakness and trim bling along with extreme fatigue. I had a hard time holding my arms up long enough to dry my hair. I would have to lower my arms several times before getting the job done. My husband would take me shopping, but I could not make one round in the mall. I would become out of breath and feel as if I could not make it back to the car. I also experienced for the first time, while on vacation at the beach, the feeling as if I were paralyzed and could not get up out of my lounge chair. I was on the beach alone at time, and I could not even say anything to ask for help. I finally gained the strength to get up, but I did not think I was going to get back to our camper. I once was an avid beach person and could take the sun and heat well. However, I know get heat exhaustion easily, and My cheeks, nose and forehead get extremely red. I do not have a severe rash, but their are signs. At that point, I saw multiple doctors and had test after test checking me for a muscle disease, thyroid, ect. They could not come up with a diagnosis. They began to discount it as depression only. I went for 11 more years having times of being better, but with much joint pain and continued weakness, never able to do the things I had always done and enjoyed. Going to work took everything out of me. Then in the past, 2 to 3 years, I began to have tingling, numbness, and cold fingers and toes, and pain in my neck,back and shoulders worsened, but what go me the most was I began cognitive issues that became so bad I had to give up my teaching job. I could not transition my thoughts, retrieve information, process information quickly enough to answer student's questions and my expressive and receptive language at such a great deficit that I experience embarrassment and avoid conversations.
Recently,, a neurologist found a positive SSA and sent me to a rheumatologist. He has put me on Plaquinel (not spelled correct) and prednisone. However, he is ad admit that I have Sjoghren's syndrome, but has not committed to a Lupus diagnosis. I am still quite confused.