I think I might have it... - Lupus Message Board

Ready · 02-26-2001, 08:06 AM

I'm too frightened to go to the doctors about this (even though I know I'm going to have to). My grandmother has Lupus, my dad died early on so I don't know if he did too.

I'm only 16, and I have a lot of strange symptoms. I have horrible joint/muscle pain (especially when the weather gets cold and in my knees especially). I get rashes on my hands, neck, and face often when I get too warm. I get hives when I get nervous. I get frequent headaches, and I have extremely bad memory (this is something kind of recent). Periodically, I get chest pains (sharp) and lung pain and shortness of breath. Recently, I've been getting nauseas a lot. I also have fatigue, and just a tired, run down, not feeling well type thing.

My sleeping pattern is waaaay off (I can't sleep at night, even if I stay up all day with no sleep, I will not be able to sleep at night most of the time).

Sadly, I don't know much about Lupus, but my grandmother recently had to be hospitalized for something related to it, so I started taking in account what symptoms I have and what they could mean. I talked to my friend who and he said it sounded like Lupus!

The thing is, I can go on day to day right now and besides feeling really tired (even when I do get a lot of sleep) and some times naseaus, it's something I can handle. If I had Lupus, would I be bed ridden and unable to do normal activities? Do my symptoms sound like Lupus, or could it be something else?

I'm 16, I don't smoke, or drink or anything like that.

I have a few questions:
How is Lupus diagnosed? (what types of tests, etc. will I have to take when/if I decide to get this looked at).
Is there medication that will help me, so the disease doesn't get worse if I do have it?
Should I avoid certain activies, foods, or situations if I do have it?

Sorry this is so long. Please post an opinion on my situation! And if this definitely sounds like a case of Lupus!

Thank you all for reading this, and please post a response when you get a chance!!!

Ready · 02-26-2001, 08:08 AM

Sorry to post again, but I left out a question. I'm only 16, is this common among teenagers? Sometimes I feel so worn out even though I've barely done anything I can't imagine what it will feel like when I'm 20 years older.

Thanks again for your time. I appreciate any type of feedback and response!

Jeri · 02-26-2001, 08:53 AM

Hi, Ready!
Welcome to this Board. All of us are here to help and to share our experiences. We can't diagnose, but through our shairng, perhaps you will be better armed with information to take to your own doctor.
First, understand one thing about lupus and other auto-immune disorders (like rheumatoid arthritis, diabetes, etc) you don't get them when you get your diagnosis. What I mean is: if you ahve the disorder, getting it confirmed or diagnosed or "labeled" by the doctor only means that a name has finally been put to what you have already been dealing with (sometimes for a number of years.) Understanding that concept helped me put the final diagnosis into the proper perspective. I had ALREADY been surviving the disease- the doctor just joined me in agreeing that there was something wrong, and she was able to put a label on what I'd been going thru.
People with lupus are not bedridden and invalids. We carry on just like every other human being. Although this combination of of disorders (lupus may accompany others) complicates your life, to be sure, many patients may go on to bear babies, raise families and contribute to their home, church and community just like everyone else. Actually getting dianosed is a real blessing, because with early intervention more serious complications may be avoided.
It must be much harder for you being 16 than for me, being 54, 'cause I've already gotten to be there-do that-buy the tee-shirt. However, my life is not over, it's only more complicated.
What role does your Mom play in your life? With your Grandmother in the hospital, she probably isn't able to assist you much right now. Does Grandma have a rheumatologist? That's the kind of doctor who specializes in these kind of things. Depending on your insurance, you may have to go to your primary doctor first before being referred. That's where your Mom can help.
The doctor usually listens carefully to your complaints- write down yours and lists dates when you first noticed them (list everything that concerns you- we often think something is not related- but it may be essential to the doctor in making a diagnosis). Then a simple blood sample is taken and lots of tests run on that. Four important ones are blood glucose, rheumatoid factor. ANA and ESR or "sed rate". All of these may point in the direction of a particular disorder that the doctor will further investigate. That is because there is NO "test for lupus". Nothing actually proves that you have the disorder- that's why a good doctor is essential.
Fearing something only makes you feel like a victim without a solution. If you have lupus, well ready, then you have already been dealing with it and you might as well get some help to make you feel human again. If you don't have it, well why not rule it out and find out what IS making you feel awful? Fear is a deceitful thing, it masks the truth. What is said about "truth"? It'll set you free. Believe me, at first I really didn't want to hear "Lupus" confirmed by the doctor. But within a few minutes (no lie) I realized that it was "okay"- that Jesus would take control if I let Him and we'd get thru this together. I did and we are!
Lupus seems to show up in mostly women and mostly in late 20's to 30's although it is seen in your age and in mine. Your symptoms are similar to those common to lupus. However, they are typical of a lot of other things like mono-. See, that's why lupus is hard to diagnose. and that's why the doctors get the big bucks! :-)
Go thru all the posts on the various topics on this lupus board to see our conversations. You'll find some links to helpful sites to educate yourself.
Ask away- we'll help in any way we can. And by the wway, you are very courageous to ask these questions. Most of us sensed something was wrong with us LONG before we did anything about it.
Jeri

Ann S · 02-26-2001, 07:59 PM

Hi,

I'm very new to this too, but the best advice I can give you is to go see a Dr. right away. Find someone close to you (Mom, aunt, or even a teacher) and ask them to go with you. If there's no one to help you with this, go talk to your school nurse. Whether you have Lupus or whatever, chances are that you're making your symptoms worse because of the anxiety & fear you're experiencing over it. Besides, most illnesses have a better prognosis when they are found early. Like Jeri said, keep track of your symptoms & your questions and take them along to the Dr. Make sure he answers or addresses them all. Good luck and keep coming back with any questions or problems if you run into them. We'd also just like to know how you are doing, whether it's Lupus or not. Ann

Ready · 02-27-2001, 09:44 AM

Thank you both so much for taking the time to reply and for the information you both provided. Jeri, I did as you suggested,
and looked through this message board and the old message board along with other sources on the internet.

One thing I found is that people with Anemia can sometimes have Lupus. My brother has Anemia, so now I'm wondering if he might have Lupus. My brother is finishing up college, so I don't see or talk to him often. Should I tell him about this, and suggest he go to the doc as well?

I don't think this is mono, I've had these symptoms on and off for a long time (at least two years), and I rarely ever have sore
throats, but I understand what you were saying about other illnesses having the same symptoms (which is why I have to let go of
this fear and just go to the doctor!).

I'm going to talk to my mom some time about this. I know she won't take it well, she'll be very upset and worried (I haven't told
anyone over the years that I don't feel well, I didn't want to worry my family).

Do my symptoms sound enough like Lupus that I should see a Rheumatologist? Or should I just go to a regular doc? Should I even call attention to the fact I think its Lupus when I go to the doctor?

Also, I have a trip that includes flying planned this summer. If I do have Lupus, would it be dangerous to my health to fly or
travel?

I have start writing down my symptoms this morning, so I can easily provide the doctor information. One of the most annoying
symptoms I have that keeps recurring is the rash. What does a Lupus rash actually look like? When I get the rash on my hands, it's blotchy, red, and itchy. Some times it looks like scratches. Blotchy rashes also appear on my chest, neck, and face (cheeks and nose especially). The rashes on my face and neck usually feel really warm (like I'm hot), and can appear from stress, the sun, or for no apparent reason. Also, I have a few of these small, pinpoint red spots on my legs and chest (I think they're Petechiae, which the information I found says they can be cause by auto immune disorders like Lupus). Do these rashes sound similar to what people with Lupus get?

I know this board can't diagnose me, but helping me narrow down my symptoms so I can go to the doctor and tell her what I think it is (I just finished reading a horror story of a girl with Lupus who the doctors couldn't diagnose and ended up dying as a result after years and years of symptoms).

Sorry this is so long

Thank you both so much for your time. If I am diagnosed with Lupus, at least I will finally know what's wrong and how I can deal with it! I'm going to try and stay positive through this.

[This message has been edited by Ready (edited 02-27-2001).]