I was diagnosed with lupus yesterday, and I'm in a total loop. I've been living with pain for so long but my parents never listened until my doctor diagnosed me with lupus. I'm 22, so everyone thought I was just being negative or that its impossible for someone my age to suffer from pain. I'm feeling really bad tonight, and I guess I'm just looking for some kind of soothing advice for someone who's finally been diagnosed and validated. it's almost like my pain has increased now that it's being recognized. has anyone felt that? maybe it's stress? I don't know, but I feel overwhelmed and confused. so anything to help calm my spinning mind or feel welcome would help tremendously.
Well I can tell you ha ing the validation is the best thing g since pain meds. And I know all about having family not believe you . give you useless advice get mad at you because they don't understand and only make your pain worse. Ive been diagnoses witb fibromayalgia and I'm still waiting on confirmation of Lupus . Your increased pain is probably stress a d worry. My pain is connected to my emotions so a y fluctuation either happy or sad makes my pain worse. I'm sorry you have to deal with this. However you have found the right place we all have a different rwnge of pain. And different diagnosis but we all care for each other and we all can and will listen . welcome to the group
When I finally was able to get someone to tell me why I was in pain, and that it was not in my head, I cried like a baby. Then for a few days the pain was worse, but I set a plan for my life. Some of the pain eased. I was in control, I researched how knowing was also healing or for me easing. I found that if I dropped the word pain and used something else more discriptive I could conquer the extreme and it helped me mentally.
Iincicle, validation does bring relief in knowing we aren't crazy, that it's not in our heads. But at the same time the dx, being chronic, will continue to debilitate and attack our bodies, and for me it was depressing. I also cried at first. But like Zetarlov, I've tried to find out as much as possible so that I can still enjoy the good days of my life. It took two years for the meds to start helping, and only occurred because I finally got an oral biopsy that dx the sjogrens (on top of fibromyalgia & hypothyroidism & Raynaud's). The sjogrens med (plaquenil) has brought the most relief. My PCP told me last week that the new pains in my finger joints are from the sjogrens attacking the fluid in the joints. I cried again. But having the official dx has helped my family to understand and offer support instead of judgment & criticism. I will keep you in my prayers. Ihope you will find a good regimen to begin having some major relief and improvement in managing your pain. 🙂🙏🌼