Just diagnosed help
shock: Hello !
My name is Tara and I was diagnosed with Lupus this week. I am overwhelmed and a bit panicked to say the least. I have bought tow or three books all stamped with the Lupus Foundation THe more I read the more I have questions. First, I thinkk I am going crazy! The whole brain fog thing is freaking me out...,I have had a painful itch for several months but to date I have NO rash that is typical of the disease. ANy time I take a shower/bath or if there is any temp change my legs itch so painfully that I cry and have the most desperate thoughts. I have fever, joint ache, pain almost everywhere but on the bright side, I have no major organ involment ....YET. DOes this lack of major organ involvement mean htat I will never or that my odds are against it ? I am os confused on this whole ride they tell me is Lupus. I am scared....so many questions.... My biggest questions lie with my itching and my brain fog...the fevers and the pain are tolerable....anyone have any suggestions about these symptoms? I am on plaquinel , Vioxx, NExium, and aspirin....I know I am rambling here....so I am sorry for that....just like I said...so many thoughts and feelings right now....so many more questions. Lupus ....wow. Scared to death...
Fever is one of the early signs of lupus. It is generally caused by an infection due to a complication of lupus (urinary tract infection, respiratory infection or inflammation of an organ). You should drink plenty of fluids to replace fluids lost and to avoid dehydration. Lupus patients are more vulnerable to certain infections than other people, especially if you are taking immunosuppresive drugs. Take your temperature at least once a day to determine what is a normal temperature for you. Watch for a fever any time that you feel chills or don't feel well and call your doctor if you have a new or high temperature. Even if you do not have a fever, call your doctor if you don't feel well, especially if you are taking NSAIDs (non-steroidal anti-inflammatory drugs), corticosteroids or large amounts of aspirin.
About 80% of people with lupus have skin manifestations and often suffer from itching, pain and rashes. There are several types of skin disease in lupus which can cause rashes, lesions and painful itching and your current treatment is the most common uses. some lupus patients use anti-hystamines (like benedryl) for the itching. Make sure that you check with you doctor before you try any of these treatments!!! Since you do not have lesions, ask your doctor about Sjogren's syndrome. This generally affects the tears and saliva glands. However, it also has skin manifestations which include painful dry skin and itching which can lead to vasulitis.
Treatments usually include: plaquenil, oral steroids, sun screen and corticosteroid creams/ointments. The skin disease in lupus can also contribute to your fevers! Sometimes, lupus has caused hives which has a sensation of itching with a burning sensation.
When my itching caused me grief, I would often rub ice cubes all over my body (sounds desperate, I know). Eventually, the heat would go away and the itching would stop for a while!!!
Talk to your doctor and never be a fraid to ask questions! In the meantime, we are here to help you and to give you support!!
Take Care of Yourself
Peace and Blessings