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Discussion in 'Introduce yourself' started by Lynn0603, Apr 25, 2017.

  1. Lynn0603

    Lynn0603 New Member

    Hello, my 11 year old daughter has had symptoms for a year. We got bloodwork back 5 weeks ago that seem like she may have lupus. We still have 3 weeks to wait to see the Pediatric Rheumatologist to work on a diagnosis as I know there are certain criteria. With that being said I am worried about everything she does. It seems excerise or should I say activity even in small amounts makes her pain level rise. Is this normal of lupus? Also her pain moves frequently. The morning it may be in her arm while by evening its in her back. We have very few days when she has no pain. Is this whats to be expected?
  2. VeeJay

    VeeJay Member

    Hi Lynn. There are many more knowledgeable people on this forum than me, but what you describe about pain traveling from one site to another, even hourly, sounds very familiar to me. It was very confusing to me. I am only recently diagnosed with Undifferentiated Connective Tissue Disease, but have had symptoms for a very long time.

    I am sorry your daughter has developed this at such a young age. But there are treatments that can help. Good luck with the rheum. doc.
    Lynn0603 likes this.
  3. keebler

    keebler Moderator

    Hi Lynn and welcome to the forum.

    Im sorry for what brings you here.
    Yes Im afraid to say that lupus does that. It should improve when she gets on the right mix of meds for her.

    You could start a log. Write down when the symptom appeared, was it painful, what your daughter was doing.
    How long does it last, take pictures of rashes and swollen areas. Take pictures along to the appointment.
    Here are some examples of what triggers lupus flares. The sun, always use sunscreen, plus artificial lights in doctor offices, shopping buildings and even your home. I have gone to using LED light bulbs. Stress is another big factor it can be bad or good stress. Learning to listen to your body is a good idea. (I tend to have to relearn that one) Pushing threw what you are doing only adds to the pain.

    Here is a link that talks about light sensitivity. It is a link from the home page of this forum.

    This next link is the home page.

    My heart goes out to you and your daughter. It's hard to see our children is pain. It's something that a mom cant fix like we want to. Give your daughter a hug from me.
    Take care,
  4. Lynn0603

    Lynn0603 New Member

    Thank you for the information. I have been keeping a log but maybe I am not being as specific as I could be. She has also suffered from anxiety disorder since she was 3. And I have definitely noticed her "sickness" is worse when she is having an attack. She has only had 2 rashes in the past year but she didn't seem "sick" during the summer months as much as now. So sunscreen application is going to have to be a top priority now. She had one bout of mouth sores. At the time I had no idea it could be something wrong. I thought she was simply biting herself. This is all overwhelming and waiting 2 months between positive blood tests and a dr's visit is extremely hard. I really appreciate your feedback.
  5. keebler

    keebler Moderator

    Hi Lynn,
    Is your daughter getting good rest at night? Lupus fatigue is so much harder than the regular person has.
    For us it is like, having a balloon and you let the air out. The balloon is flat there isn't any air. Or you are in a car and the gas runs out, you have zero, nothing to go on. There has been times that I had to lay down during the day and take a nap. If I don't I would probably fall over. You are zapped out of energy.
    It seems lack of sleep equals more pain and it turns in a vicious cycle that is hard to break.

    Could you call your doctor and see if they could get her in earlier? Or go on a cancellation list? Perhaps telling your doctor about all her symptoms might get you in earlier.

    Take care,
  6. Lynn0603

    Lynn0603 New Member

    She gets 9-10 hours of sleep a night. She could probably take a nap in the afternoon after school but she pushes through. This dr office doesnt have a cancellation list. I can call everyday (which I did a couple of times) and ask if they had cancellations but unless she gets extrememly bad I have decided to wait. One things that has me confused is the last 2 times she had CBC done her ESR (1mm) was low. I thought that is would be high with inflammation. Any thoughts?
  7. lazylegs

    lazylegs Moderator

    The blood does not always correlate with how we are feeling at the time. I can feel terrible and the numbers are spot on. Then again I can be sailing along feeling pretty normal and the numbers are off. Fortunately my rheumy takes more than just the blood into account when treating me.

    Take care,

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