Newly Diagnosed Patient

I am a 33 year old mother of two. I was recently diagnosed with Lupus and I must admit, this has been a scary endeavor for me. I have a butterfly rash from cheek to cheek across the bridge of my nose which makes me self conscious about my appearance. I have horrible muscle pain from the back of my neck, all the way down my back into my legs and my right foot pains me so bad. My arms are affected with the rash as is my face. I had no knowledge of Lupus until my my diagnoses. I have been reading about it now and its becoming overwhelming with the stories I am hearing/reading. I have Full support from my family but I though joining a group of like people would help me cope a litter better; considering you are aware of what I am going through. Thanks for having me

Hey Val! Welcome. Don't be overwhelmed. Sometimes--when you can, you have to just go about life as normally as you can because it's too much to absorb. This is a great support system. Many very positive, upbeat people even though they are all dealing with some pretty rough circumstances at times. It does help to laugh at things if you can. I always say it's better to laugh than to cry. It is hard to cope sometimes with perceived losses. I get frustrated with the way my hands can't seem to do what I tell them. And I haven't been officially diagnosed yet but I'm pretty sure it is lupus. I have all the symptoms but the rash is not the typical malar rash. It is more of a generalized redness to my cheeks and chin and it comes and goes. To me it's hard because people think I'm ill or angry or sunburned and there's no covering it when it happens. When my condition started, only my joints in my hands were affected and then it swept thru and got all of them. Then the Raynaud's showed up. The low grade fevers and so on. I lost a cousin to lupus in July--she was 36--young, younger than me. But I am not nearly that ill. Thank you God. So, anyway feel free to write and friend everybody you like and can. These are good people who care. Their knowledge base from being in the trenches and fighting is huge! I'm a nurse and I learn something everytime I talk to someone. Take care of yourself. Rest when you can. When you have good energy, prioritize and get the most important stuff (to you) done. I always make a to do list longer than my energy lasts. So, it helps to know what's got to be done. And sometimes that thing is strollin through the antique shop and reminiscing about the good old days. We are here for you. Talk anytime. Some of us don't sleep much. When my computer doesn't crash, I talk alot. Hugs and support to you, Karla

Hi Val

Great advice from Karla : ) You don't have to be afraid here, ask any questions and there are plenty of people ready and willing to help you. And you may be helping another person that is too shy to ask themselves.

I am newly diagnosed myself, just in June and I had no knowledge of it either. At first my Rheumie thought it was RA. The foot pain is was brought me here. Now that I know more, I realized my mother was undiagnosed. She had the rash and mouth ulcers, in addition to diabetes and heart disease. It is a scarey thing. We are all different as to what degree our symptoms take us, and how severe. You can search the discussions at the top for specific issues on topics that have been addressed. You'll make lots of friends here, that will help you through this. I'm glad your family is supportive, but its difficult to explain some of this to them or sometimes even how you are feeling.



Hi Val

As you can already tell, there are some caring people on here. Everyone is different in the issues we are dealing with; however, we certainly understand the frustration in getting a clear diagnosis and finding a good doctor, and understanding the disease. And my guess if you list any thing you have a question about, someone will come forward with something that will help and encourage you. Until I got on this site, I often thought my illness must be rare because none of my friends had it. But alas! we are suffering all over the world with the same different degrees. So we hear your heart. The pain in my neck...down my my knees and joints... Many of us share the same story. We identify immediately!

Many on here have survived a life time of having lupus and have gone on to accomplish many good things. So don't take it as a death sentence. It isn't easy but it is possible to persevere in the hard times....have good times...then learn to rest during a flare. You will become creative as you deal with the many questions from your friends....You will learn tremendous coping skills from those who are trail blazers for us...and how I love them! And you will be admired by those who love you and see your courage in fighting this disease. As Karla mentioned, a good sense of humor goes a long way in helping you through hard times.

And best of all you do have those here who join hands with you to help you through the hard pray for you...and understand your pain. As Tricia said....sometimes it is difficult to explain how you are feeling...even to those who love you. Believe me....We do understand...and we care about you and your precious children.

Love to you,


Hi Val,

We have a lot in common. I was diagnosed in February, after I had been mysteriously ill for five years. I too have 2 children. I am 32 years old. It's a normal reaction to feel overwhelmed by your diagnosis. I had a feeling I had Lupus as the symptoms began to show, but I kept telling myself that it wasn't Lupus. I was so scared, when I decided to look into how I was feeling, I took my mother to the doctor with me. She said "Whatever it is, medicine today is so much better than it was years ago. There is nothing that we can't handle". I was diagnosed three months later. I think it was scarier not knowing, because the symptoms I was experiencing made me feel as though I would just die at any moment. I was so sick, I couldn't get out of bed, and all my joints hurt. I couldn't even shower, because the water beating on my skin hurt so bad. I couldn't walk up stairs, or dance, or play with my kids. My blood pressure was sky high. I couldn't breathe, because my sinuses would always be irritated, and I kept getting Bronchitis. I felt like someone just stole my life from me. However when I found out what it was, and finally started medication, I slowly find myself coming back to life! This disease is different for everyone, but in most cases it is a manageable disease. I am learning to cope with taking medication everyday. But for now I can recognize my flares, I know what activities to stay away from to keep myself healthy. I take breaks and pace myself. I am still working, and I find time to spend with my kids. No I can't run and play with them, and I wish I could, but I take them out and I enjoy them. Don't let your diagnosis consume you Val. This may not be how you imagined life, but if you dwell on it, you will miss out on enjoying your family and friends. The way I think of it, I don't want to live whatever life I have left being a "sick " person and feeling sorry for myself. And if Lupus does take me out, I plan to go out with a bang, not a whimper! I appreciate life so much more than I did prior to my diagnosis, because I realize time is precious, not to be wasted, so I try to make each moment a good one, even if I'm at work. I have the butterfly rash, I use hydrocortisone cream on mine, because it is itchy at times. Stay out of the sun if you can, and use sun block because it helps. When I get my rash it looks like I am wearing too much bronzer, because I have a tan complexion. I just work with it. I can't change it, so I accept it. I used to get a giant splotch on my forehead that looked like I'd been a fight. Everyone would ask what it was, and I had no idea it was from the sun. I was definitely self conscious. I cried a lot at first, because I didn't think it was fair that I was chosen by this disease. But the more I cried, the more I realized I needed to be strong for my children, after all, I am a single parent, and my children rely on me to be the rock for our family. It's going to be a rough road, I am still recovering from a flare, and it was awful. I had bronchitis again, and it sent my body into a tailspin; so much aches and pains, coughing, fevers, hives, my whole body tingling like I was being burnt alive. Nevertheless I face my disease head on, I have to. So my advice to you is to stay strong, remember that you are a fighter, and that you have children that you need to stay strong for, so don't throw in the towel until you absolutely have to. I found this site to be helpful, because it let me know that there are people out there who are going through what I am, and they are living. This gives me so much hope. I hope it does the same for you. Feel free to reach out to me if you need to talk.

Hi Val! So glad that you have a supportive family, that is so important and not very common, so cherish that!

Hope you have a good Rheumatologist, they will become your life line when you have them working for you! Wishing you all good things!



Well thanks Ladies Karla, Trisha, Faye, RisaRae, SK..... I truly appreciate the words of encouragement. I really do. I I'm m sure we are all strong willed women and with a FABULOUS future behind us. I am happy to know I now have the ability to communicate with people that knows exactly what I am going through. I will keep in touch and much love and wellness to you. :) by the way does anyone have any recommendations of makeup I can use that will not affect my facial rash?

Your welcome Val! I wouldn’t recommend wearing makeup if your rash is severe, as it may cause more irritation. Mine tends to show up if I’ve been in the sun without sunscreen or if I’m flaring. It’s pretty faint, though it’s itchy. I only wear makeup if it’s a special occasion. I’m African American as you can see from my profile photo, which can make it hard to find a good shade to match my complexion. I am using a BB cream from Loreal as a primer, and I use Smashbox cosmetics for foundations and concealer. I have very sensitive skin, and it doesn’t seem to irritate me, and it provides great coverage without making me look artificial. Also, be sure to look for make up that is hypoallergenic and has SPF protection as well, even if it’s minimal, just in case the sun catches you without an umbrella.

Hi Risa,

I happen to like Iman, the model, besides designing beautiful clothing, she makes a very nice line of cosmetics for dark skin. I have used her lipsticks, and moisturizers, and they are great. I am very pale so her foundations are not for me, but may work beautifully for you!

Hope you are well,


Hello Val,

First of all, having a loving family around you is the main concern to lean on when times are down and whatever stories you've read not all people with Lupus go through the same situation...yes some do have it severe and some only slight, so try and wipe your mind of what you've read because for a start that won't help you and worry is one thing you can do without as it does'nt help Lupus.

I know and a good many more members what your going through with the butterfly rash (malar rash) my was deep red like someone had put a burning iron on my face but at the time i did'nt know what it was i thought it was due to stress in the circumstances i was living in and i did'nt care what other's need to take notice of what your going through not what other's think as those are the ignorant ones with bad manners.....are you on any meds or cream to help your skin Val?

Love Terri xxx