I'm new to all of this...
Well i'll start with introducing myself....I recently turned 21 years old and was just diagnosed with lupus. I first went to the doctor back in November, because I had notice the butterfly rash and after blood tests he ruled out lupus. However, nothing was getting better so I decided to see a dermatologist. I expected it to be like any other appointment I have had, but he had to take two small biospies from the rash on my cheek. I was terrified, but put on a huge front. When I went back to get my test results, he told me that it is lupus. The next day he refered me to another doctor who has put me on Plaquenil for it. I go back to him in a week to get more test results back....I'm scared.
So now on to some of my questions that maybe you guys would understand.....
Does anyone else feel like they always need to be the strong one about this? I still feel like I have a front on and haven't really expressed how I really feel. But I don't know how I feel about it...are anyone else's emotions as unclear as mine?
The weird thing about this whole thing is that the main/only symptoms I have is the skin rash and fatigue. It's hard cause i'm continually asked on how i'm feeling and if i'm having any joint pain and I don't think I am.
Does anyone else have only these symptoms? I know things will change, but will I notice when they do? I'm afraid I won't be able to notice the changes until their severe. Or now i'm trying to notice differnet pains but when I do notice some pain I'm afraid I'm just being picky and complaining about normal pains. Will it get easier to distringuish between pains?
Well I ended up writing alot more than I thought, I guess I haven a lot more on my mind about my new diagnosis then I realized. I'm glad I found this sight and look forward to visiting with some of you! Take care everyone!
I can relate a lot to what you have gone through. I'm 20 and I was just officially diagnosed about a month ago. My first symptoms and only ones for awhile were a rash and Raynauds. I'm on Plaquenil now as well. So basically, my story is a lot like yours.
I did feel like I always had to be strong. I would always try not to put my emotions on the people around me because I knew it was hard for them to deal with as well. At the same time though I did end up sharing my fears and things with my family and friends because its so hard to keep that all to yourself. Something I found really helpful was journaling...it lets you get rid of some of the emotions without worrying anyone else. The first few months of being tested for Lupus and things really were a roller coaster. One day I was so happy to be alive and the next day I was depressed about being sick. For me, it has evened out but some days are still hard.
I found that keeping a calender where you write how you are feeling that day and what is bothering you helps distinguish when you have symptoms. It helps me to recognize trends and see how often things are happening. My suggestion though is to not put anything off. If you do start having some joint pain for a few days, I would call your doctor. It's better to be safe than let yourself get sicker.
Good luck and the best thing to do is dwell on the positive
Thanks Trista! it's amazing how much it helps just knowing that i'm not alone in this and there is people who know how i feel and what exactly i'm going through. Take care.
So far I have found that the hardest part is trying to stay out of the sun. Being in the sun is my favorite part of the summer. It's hard to find other things to occupy that time. I'm trying to find a good sunless tanner to at least have a summer tan (i'm use to that). If anyone has any suggestions on good sunless tanning lotions I would really appreciate it. Thanks!
Hi T! I'm 27 and I've lived with systemic lupus since I was 11 years old. I've grown up not being able to go out in the sun and it sucks!! I too have not had many symptoms until my recent flare. This flare is the first time that I had extreme fatigue, joint pain and would come home from work crying because I couldn't walk let alone drive home. But there were many times I'd go to the doc's they'd ask about joint pain and I never had any. But remember you don't always have to feel strong. And don't hold how you feel back. If you feel bad make sure you tell someone especially your doctor. If you don't let your doctor know you are only hurting yourself. I am frequently like that. I don't want to say I don't feel well because I feel then the lupus is getting it's way and I don't want to be sick. But you have lots of support here! Hang in there! It's nice to have others that are close in age like us! Oh and Trista recommened on a post of mine for self tanners that jergens natural glow (the gradual bronzer lotion) is pretty good.