Family History of Lupus and I'm concerned that I might have it?

Family History of Lupus and I'm concerned that I might have it?

Posted In: 1 Replies
  • Posted By: amymoo75
  • April 15, 2009
  • 04:56 PM

I'm 16 years old, I was tested for Lupus when I was 9 years old - the test came back negative. I was tested because my dad's 3 sisters have died from it and my dad's brother is currently critically ill with the condition. Although my dad doesn't appear to have the condition it's still possible he could carry the gene.
When I was tested I had no medical problems at all. Then when i was 11 I started noticing that I had freezing cold feet and more recently hands. My circulation has got so bad now that i can't stand for a prolonged period of time or my legs go very purple with orange blotches and it is extremely uncomfortable.
About 2 years later as i was still suffering with my circulation i started to develop wide spread pain/aches all over my body specifically my joints. Both these things are still a major problem today however it has never been diagnosed and i'm frequently told by doctors that there's nothing wrong.
More recently i've started having constant really painful headaches which refuse to go away with any painkillers.
I also suffer from recurring mouth ulcers.
The most recent symptom of lupus i have noticed on myself was pointed out by my friend and it is the common "butterfly rash".
I also suffer with what the doctors call "chronic fatigue syndrome" which now after doing some research into i'm not convinced that it's not just another symptom of lupus.
I also get a rashes on my arms and chest which don't itch and on first glance they look like heat rashes however they now appear when it's not hot.
I'm also currently battling with depression.
I also have severe abdominal pain which isn't ovarian or appendix because i have had both removed.

I'm scared to ask my doctor to re-test me for lupus but at the same time i'm very concerned i could have it.
I'm on here to ask if anyone would agree that it sounds like i have lupus? and if not are there any other suggestions?
I am a very confused young teenager and i just want to find out what the ***l is wrong with my body so i can live my life again

Reply Flag this Discussion

1 Replies:

  • I'm 16 years old, I was tested for Lupus when I was 9 years old - the test came back negative. I was tested because my dad's 3 sisters have died from it and my dad's brother is currently critically ill with the condition. Although my dad doesn't appear to have the condition it's still possible he could carry the gene. When I was tested I had no medical problems at all. Then when i was 11 I started noticing that I had freezing cold feet and more recently hands. My circulation has got so bad now that i can't stand for a prolonged period of time or my legs go very purple with orange blotches and it is extremely uncomfortable.About 2 years later as i was still suffering with my circulation i started to develop wide spread pain/aches all over my body specifically my joints. Both these things are still a major problem today however it has never been diagnosed and i'm frequently told by doctors that there's nothing wrong.More recently i've started having constant really painful headaches which refuse to go away with any painkillers.I also suffer from recurring mouth ulcers.The most recent symptom of lupus i have noticed on myself was pointed out by my friend and it is the common "butterfly rash".I also suffer with what the doctors call "chronic fatigue syndrome" which now after doing some research into i'm not convinced that it's not just another symptom of lupus. I also get a rashes on my arms and chest which don't itch and on first glance they look like heat rashes however they now appear when it's not hot. I'm also currently battling with depression.I also have severe abdominal pain which isn't ovarian or appendix because i have had both removed. I'm scared to ask my doctor to re-test me for lupus but at the same time i'm very concerned i could have it.I'm on here to ask if anyone would agree that it sounds like i have lupus? and if not are there any other suggestions? I am a very confused young teenager and i just want to find out what the ***l is wrong with my body so i can live my life againHi amymoo75,As sad as I feel saying this, I have to agree that, considering your signs & symptoms in conjunction with your family history, it is highly likely that you do have lupus. In addition, your cold and discolored hands and feet are very likely indicative of Raynaud's Phenomenon, a condition that causes intermittent restricted circulation to hands and feet. Unfortunately, Raynaud's is a very frequent complication of lupus.It's quite unlikely that you have Chronic Fatigue Syndrome; I believe that you are correct in your thinking that your fatigue is one more symptom of lupus.amymoo75, PLEASE don't put off seeing your Doc. As frightening as it must certainly be for you, it's REALLY important to have a definite diagnosis as soon as possible. While I'm sure you must be all too familiar with the difficulties of lupus, starting effective treatment as early as possible will help you as much as possible. And while it is rare, there ARE people who have gone into remission from lupus. It's not impossible.At any rate, once again amymoo75...PLEASE PLEASE PLEASE muster up your courage and see your Doc. Don't put it off. There's an old saying "the Devil you know is better than the Devil you don't know." That's very true in your case. The unknown is usually what we fear most. With knowledge comes power to act. And power is what you need.Unfortunately, I lost a sister-in-law to lupus in the 1980's so I know first-hand just how difficult a disease it can be. I am concerned for you.Please let us know how things are. And if I can be of any help to you don't hesitate to email: jonmac391v@comcast.netMy best regards and wishes,John<
    JonMac 165 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.