Results 1 to 4 of 4

Thread: So lost and confused

  1. #1
    Join Date
    Jan 2009
    Thanked 0 Times in 0 Posts

    Default So lost and confused

    Hi my name is Kayden and I'm 17 years old. After years of searching and testing I believe I have lupus. My doctor hasn't confirmed anything yet but said there was a high probability that I do have it. As i have not been officially diagnosed yet I was wondering if you guys could give me your opinion on wether on not I have lupus. My symptoms are:

    - hair loss
    - fevers
    -stomach problems/ vomiting
    -extreme fatigue
    - weight fluctuation
    - joint pain
    -muscle aches
    - depression
    -lack of concentration
    - heart pain when i breath in deep
    -racing heart
    -sun sensitivity
    and many many more : (

    I also have thyroid problems but at this moment my levels are evened out. I'm both relieved and terrified of being officially diagnosed with lupus. I have already lost all my friends due to health issues and can't even function on a daily basis. It takes all my strength to continue living from one day to the next. I'm not sure how i am going to be able to function for the rest of my life living like this, especially as I head off to college next year. No one I know understands what I am going through and many people think I am making up my problems to get attention. I'm sick and tired of living this way but I don't think it is going to change any time soon. Do you think I will ever get better?

    I would appreciate any advice, tips, are questions you guys have for me. I am so amazed at how positive the members of this board are and I want to become a part of such a wonderful community. I hope to get to know all of you soon. : )

  2. #2
    Join Date
    Feb 2008
    Nova Scotia, Canada
    Thanked 1 Time in 1 Post


    Hi Kayden and welcome to the sight.

    Lupus is a mixed bag of symptoms, it affects us all differently. It can take awhile to get a diagnosis.

    My sister was diagnosed with lupus back in the 80's. She has been in remission for quite awhile.

    A couple of years ago she started displaying some of the symptoms you have described. She thought her lupus had flared up again.

    Turns out it had not. Our doctor sent her to be tested for celiacs. All of her tests came back possitive.

    She does have lupus but now has had to adjust to celiacs as well. Which she has done beautifully.

    I strongly recommend you speak to your doctor about celiacs and getting tested.

    Celiacs is an intolerance to wheat products. DO NOT change your diet before you get in to see your doctor and get tested. Changing your diet will mess up any test results and prevent the doctors from being able to diagnose properly.

    Most of the symptoms you have listed there sent off a warning flag with me. I really really think you need to speak to your doctor about this.

    The gluten from the wheat coats your bowel and prevents you from absorbing the nutrician you need.

    This can all result in:

    - hair loss
    - weight fluctuation
    - joint pain
    - stomack issues
    - fatigue
    - heart palpitations
    - trouble concetrating
    - flue like symptoms

    Course alot of these also sound like lupus and or irritable bowel syndrom. Please do ask your doctor to check you for celiacs as well.

  3. #3
    Join Date
    May 2008
    Portland, Oregon
    Thanked 0 Times in 0 Posts


    Hello Kayden and Welcome,

    I just wanted to give you some hope.............

    You must not give up. I spent the first five years after my Lupus diagnosis very sick with a very severe case. My doctor was able to get things under control and figure out which medications worked best for me, but it just took some time. Eventually, things calmed down and I have been in remission, symptom free for about 12 years now.

    It was difficult to see any light at the end of the tunnel when I was feeling so sick and having so many symptoms, but I did get better. It took some time for me to figure out the things that were causing my flares or making them worse, but I did learn how to live with this disease. For me, the worst triggering factors were stress and the sun. I had to learn how to manage my stress, limit it as much as possible, and take good care of myself. Also, I had to avoid the sun at all costs. That was very difficult for me because I was 18 and absolutely loved to lay out in the sun.

    The symptoms you list certainly can be related to Lupus, but this disease appears differently in everyone. Every case if different. One of the most important things with Lupus is that you have a doctor that you trust and that listens to you. Someone that will be on your side and will help you to find a treatment/treatments that will work for you and your symptoms. If life is unbearable with your symptoms, call you doctor and let them know and ask to be seen.

    Most importantly, do not give up hope! Try to take things one day at a time. Sometimes, if that's too much, one hour at a time. You can get better.

    I'm hoping for better days ahead for you...........



  4. #4
    Join Date
    Dec 2008
    Blog Entries
    Thanked 94 Times in 83 Posts

    Default hi

    Sending you gentle hugs


Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts