URGH! WHat is this? Newly 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...
First thing is stress plays a big part in this disease. Yes right now it is a difficult time and yes it is scary. But with others support we can win this battle.
You will be able to deal with the brain fog. It comes and goes and so days you will just be in the fog. Those are the days your body is telling you to take it easy.
Yes, not all has a rash. There is either organ specific or non organ specific. But lupus in each person takes a different course. Just because you read all that stuff such as kidney problems cardiac problems doesn't mean each person gets it. I have non organ specific. List of symptoms include mouth sores, hair falls out, all over aches and pains weakness, musclecramps, protein in urine, frequent headaches and chest pain. Just know your body and when something is new such as a ache or pain. You have to have a open relationship with your doctor. And find your triggors.
Have you been tested for allergies? The itching could be that. I use benedryl and anti itch cream. You got to try to find out what triggors you. Like my period brings on brain fog, lack of 8 hours of sleep, coffee, chocolate, rashes seem to be non hyperalergenic makeup and soaps, do you have a water softner? Have you tried a new soap or something is the stress higher do you notice it worse with certain food and things you drink. Keep a journal this will help so much.
How long have you been on the plaquinel? It takes about 6 months to start feeling better and believe me it is a slow process. Did the itching get worse with any new medications?
Know that there are poeple here to help you. This is a uncertain time and most difficult. Educate yourself like you are doing? Ask questions when needed. There is a key to managing this disease it is thru education, support, and learning your body and knowing how to take care of yourself. Start with the bacics first nutrition, then sleep rest pattern, decrease stress, just be overall good to yourself.
Hang tough and write when you need to