Trying to cope?

Hi all,
So a little background, I’m 25 and my only diagnosis is fibromyalgia. My sister has fibro as well as lupus SLE. My rheumatologist has done some lupus testing but when my ANA came back negative it seems that it went to a halt. I have all of the same symptoms as my sister, my hair is falling out dramatically, I’m constantly tired and in pain, I have severe skin issues especially on the palms of my hands along with skin discoloration, sever muscle spasms, severe dizziness, I’m losing weight when I am already very small, among many other issues. My sister believes that I have lupus as well as she does. We have been going on the San Francisco lupus walks and getting involved in alot of ways. I’m wondering if anyone has any suggestions on ways of coping while going down this road to find out what’s wrong with me. I’m ruining relationships because of my mental state. I go from okay, to so mad I could scream, to crying. I just wonder if ill ever get an answer. I want to be a good mom with a good attitude. How have you coped?

Hi Alicia

Treat yourself as though you have been diagnosed as Lupus. Stay out of the sun, follow a sensible diet, hydrate and get the rest you need. Get a 2nd opinion, and you know your body better than anyone else. I was diagnosed at 50, and now that I know I have Lupus, some of the weird things I had going on when I was younger make sense. I'm glad that you're here, and we accept you with or without a diagnosis.

Hi Alicia........I agree with Trisha to treat yourself as if you have been diagnosed with lupus......wear sun-screen and avoid sun and florescent lights, eat healthy and take a multi-vitamin and calcium.

Hang in there and don't give up !!!


Thank you guys so much. It’s hard cuz the flouresent lights do make my dizziness worse and that’s all we have in my work. I have to work to take care of my son and my home but it gets harder all the time. I cherish how strong you guys are and hope to be that positive myself one day soon. I’m going to start taking cymbalta for my fibro, but everyone is convinced that its more than that due to my symptoms (including my walk to end lupus team leader who also had a negative ANA but was still diagnosed) thank you guys for your responses. And living like I already have it is a good idea as well as talking with my son.

I agree with the posts above. Treat yourself as though you have a DX.

Sun & Light,- awareness use sunscreen several times every day.

Wherever possible when tired rest. If you are not able to rest, do the 20 min power nap ( or teach yourself how if not already a part of your life).

Accept it may take years to get a DX; - but you can manage a lot of your symptoms in the interium. Does your sister have Doctors she has faith in? Can you get in to see them?

Best wishes to you. Try to stay calm in attitude (we all know how hard it is to do). Keep a record of new symptoms as they crop up.

Believe what we all say about the sun & fluro's. You must use barrier clothing & sunscreen.

Kaz xo

Keep talking and be honest about how you’re doing. It’s okay to cry (it actually releases a stress hormone in your tears). I have two small kids and I have to explain to them sometimes about being gentle with mommy.

Sunscreen under fluorescent lights helps just as much as being in the sun.