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!!!

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!

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

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

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 http://www.healthboards.com/ubb/smile.gif 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).]

Hi Ready...When I was diagnosed at 16, I was so glad to find out what it was. Everyone thought I was crazy. My grandmother also had Lupus. Definatly see a doc and tell him your suspisions. Try not to panic until you have more firm information. You can live a semi-normal life. I am now 34, play tons of team sports and have 2 children. I just have to listen to my body and take it easy when it gets mad at me. I hope things go well for you. You have recieved great advice from the others who have responded. Good luck!

Ready,



As you will notice, I used the quote feature cause it so easy to for me forget (not just because of Lupus either) some of the questoins you asked without having the text there to glance at. Again, I want to remind you that I'm new to this.



-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?-



My opinion would be not to tell him to go to the Dr. yet. After you find out what's wrong with you, if you still think it's related, then share your diagnosis with him and see if he has any other symptoms besides the anemia.







-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 don't think sore throats are a must with mono, but there are still a lot of other diseases with your symptoms, including some of the less severe autoimmune diseases.



-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).-



I think you should make it a point to talk to your mother tomorrow when she has a few minutes free. As a mother of 2 daughters (19 & 22), no matter what is going on in my life, I would want to know and be able to help them. Remember, whatever it is, it is not your fault! From what you've written, I think you are one of the most mature, thoughtful, & considerate teenagers that I've ever run across. BUT, even us adults need someone to help us through this! (From your writing, I can tell you're very bright & concientious too. I work at a school, I know.)



-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?-



That's a tough one. If you have a really good regular Dr., I might start there. Share all your symptoms & your families' medical history with him/her. See what he thinks first, and then maybe later ask him about the possibility of Lupus or some of the other autoimmune diseases if he doesn't mention it. Here's some of my reasoning......First, you want him to keep his mind open to anything. Just like when you take your car to the garage to get fixed and you tell them what you think is broke, they often will only check that and not even look at anything else that's broke or could be causing it. Also, you don't want to put the idea in their head that you just read about something, and now you're having psychosomatic symptoms. After he gets to know you a little during the exam, then you could share your fears about Lupus with him.



-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?-



As far as I know, I've never heard of a problem with flying. There had better not be cause no matter what happens to me, I'm still planning to fulfill one of my dreams to travel a lot.



-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?-



Here's what I know from personal experience. About a year and a half ago, I developed a severe rash on my arms, from my elbow to my shoulders, red and blotchy. It wasn't real itchy. When I was in the sun, or even the shade for a long time on a hot day, it would get so hot and just burn. Then sometimes too, it would itch a little. I also had/have some on my upper chest, but that looks different. On my chest the spots are bigger round and more flat. (I can't remember what they looked like with sun.) I never had any on my face, although I do have a few small round spots there that just keep peeling over and over, with or without sun. Initially, I went to a dermatologist nurse practitioner who said it was sun allergy & gave me a cream to put on that made it worse. Then in Nov., when the stuff on my arms was gone, I got in to see our reg derm. Dr., he looked at my chest, and then asked to see my back, and he said it was hives. The following spring, I was in to see him for something else, and then he said the stuff on my chest was permanent sun damage. When I mentioned it to the rheumy Dr., he didn't answer me. So, is it connected to the Lupus or some other autoimmune disease? Who knows, certainly not my doctors!!



-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).-



My opinion, pick some better literature to read!!! You're not like her cause you're way ahead of the game compared to most. The regular research can be good though in order to know what symptoms are relevant. I'm still discovering some..... like what's this about small pinpoint red spots? I have something like that all over my stomach. I pointed those out to my gynecologist about 10-15 yrs. ago & he said that happens sometimes after having kids.



Well, I think this is longer than yours, so quit apologizing. Here's a 2nd mother talking.....Talk to your mom now, get an appt., and while you're waiting for it, I think you can take some ibuprofin (better than tylenol cause it's anti-inflammatory) to help with the joint pain, and stay out of the sun and/or tanning salons. One more thing and then I'll quit nagging, be good to yourself and don't feel guilty about resting when you can. Take care, Ann

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

This is a quick reply to everyone:
I just finished talking to my mom and we are heading to the doctors in an hour. I'm very scared right now. I hope everything goes well. Thank you all so much for the great responses. They've really helped me see that this is something I need to start dealing with. I'll tell everyone how it goes.

Hey Everyone,
Here's what happened since the last time I posted:
I went to the doc on the 2/28, they did a regular physical, no blood drawn. I was scheduled to go back and get blood work done, but I was in the middle of changing insurance so I had to postpone until today.
I don't know all the tests my doctor is running with my blood, but Lupus and Diabetes are two of them. I'm also going to have x-rays on my knees (which were the source of my joint pain, ranging from mild to so severe I can't even get out of bed). I'm getting the x-rays tomorrow, so hopefully that will go well.
Hopefully the doctors will be able top pinpoint the cause of my pain!! I'm not as worried and scared as I was before. I just want to know whats wrong so I can hopefully start feeling better.
Thanks everyone that has answered my questions. I'll keep you all updated!

Hooray, Ready!
You're back! We have been worried that you wouldn't return and update us.
You go girl- you did the sensible thing and headed for the doc. Don't be discouraged- it'll take a while for them to sort out all the symptoms and coorelate them with lab results. Write stuff down as you recall the history of your symptoms. It'll help the doc when he/she decides how to treat whatever you have.
I'll continue to pray for you. You have one smart and supportive Mom- give her a big hug!
Jeri

Thanks Jeri! This message board played a large role in me actually facing this and going to the doctors about it! I would just like to thank everyone once again who answered my questions!
And now, for more questions http://www.healthboards.com/ubb/smile.gif
My doctor didn't seem concerned at all with any of my symptoms. I told her sometimes my knee pain is so severe that I have to lay down, and she replied that sometimes teens get bone pain when they grow. I told her my grandmother has Lupus and I felt I might be at risk too. She asked me if I ever get a butterfly rash on my face and I told her that sometimes my face will get red without any known reason. She then said that I probably didn't have lupus!
Is this correct? I don't want to argue with the doctor, but I don't think everyone with Lupus gets this butterfly rash on their face. I know my grandmother doesn't. I'm worried that if whatever tests she has run comes back normal I could still have lupus or some other hard to diagnose disease. She didn't take into account any of my symptoms beyond the joint pain which, as I said, she dismissed as growing pains.
So, if all these tests she has run (plus the x-rays I'm getting) come back normal, should I just drop this, get a second opinion, or go to a specialist?
The doctor said that the test would take a while to get back, because they are doing an arthritis panel, but I'll be sure to keep everyone posted!

Ready,
Take a deep breath and jump into researching while you are waiting. It's imporatant to be able to stand firm until you get some answers. Get you Mom on board the learning train so she can be an advocate for you. Don't anticipate the worse- just see what you get and be ready to take a next step. Especially know what the blood tests should read and go from there.
It's not unususal to get blown off by the first few docs you see. Investigate your health insurance, too. You may be able to go to a rheumatologist without a referral. What kind of doc did you see?
I never had a test run that took over 2 wks. Most of the stuff is back in a couple of days. I get my doc to fax the results to me. If you can get them to do that BEFORE your next visit you will be better prepared.
Hang in there, Gal.
Jeri

Thank you Jeri, you've been wonderful answering all my questions http://www.healthboards.com/ubb/smile.gif
The doctor called to tell me all my tests are normal. Now I'm really confused. My mom wants to get a second opinion, but that won't change the test results. I don't know if I should just let this issue drop and live with the aches, pain, fatigue, or go to another doctor.
If my tests results are normal than should I even worry about any of this? I still don't feel well at all but maybe the doctor is right and its associated to something else.
My ANA test was normal. What exactly does this mean, then? I don't understand how someone my age can feel so physically exhausted, achey, and horrible and still be perfectly healthy!!! Please, anyone with advice, post!! Me and my mom really need some advice on what to do now.
Thanks again for continuing to answer my questions http://www.healthboards.com/ubb/smile.gif

Ready,

I agree with your mom.....get another opinion from a rheumatologist. Make sure you get a copy of all your test results(including the x-rays and take them along). If he agrees with the other dr., then ask him what he thinks you should check next. None of your symptoms sound normal! If I had listened to all the drs. in the past that said there was nothing wrong, when the symptoms told me otherwise, my family & I wouild be in very poor shape!!! Keep fighting and trying, Ann

Ditto what Ann said. Remember, Fibromyalgia doesn't show up on any tests, either.
Jeri

I hope you're feeling better Jeri! http://www.healthboards.com/ubb/smile.gif Thank you both for the quick responses. My family and I were desperate for advice as to what to do next.

I'm going to have to get a referral to see a rheumatologist so I don't know when I'll actually go. I don't think my doctor is taking me serious; she dismissed or completely ignored most of my symptoms and seemed completely disinterested in what I had to say, so I hope I can even get a referral from her!! It's funny that for about three years I ignored/denied these symptoms but when I finally face them and go to the doc I can't get the consideration of acknowledging my symptoms!! I don't expect an overnight diagnoses for something this complicated, but she could show some interest or make a note of my symptoms in my chart (she only wrote down joint pain and some of my family medical history)! I've asked my mom to take me to a different
doctor for the referral, but I don't know if she will. Whatever is wrong with me, it sounds like its going to be an up hill battle to get any results or diagnoses. After two doctors visits I almost feel like conceding and living with the symptoms! I admire you all for having the ability to fight. I feel so exhausted from my day to day life I don't think I have it in me to fight for a diagnoses. With that said, though, I'm still going to go see the rheumatologists.

Sorry for that rant. I had to vent. I'm feeling particularly exhausted/frustrated because I can't sleep due to leg pain and insomnia.

Ready,

Don't know what to advise you on the insomnia, but try some over-the-counter anti-inflammatories (ibuprofin, etc.). Ask the pharmacist to recommend the best or strongest one. (even the pharmacist at our Wal Mart is always helpful). Did the dr. run an ANA screen test? Keep trying, Ann

I have a prescription of ibuprofen, 600mg. They do relieve the muscle pain but not the deep ache that I sometimes get in my joints and bones. Also, sometimes I get this sharp shooting pain in my legs and it makes it really hard to fall asleep.

The doctor did run an ANA test along with a few others which all came back normal.
The doctors office called today to say that my x-rays are normal. My mom asked if we could get a referral to a specialist and she said she call us back. So, I should have an appointment soon.

Hey Ready,
I know that right now you feel like there are no professionals listening... they probably aren't, but WE with a little bit of experience (new-as-we-are) are praying for you and encouraging you to hang in there. To be really hard on you: you HAVE to begin to get strong AND patient with this. If you have an autoimmune disease you are in for a lifetime of dealing with it and in for a lifetime of adjusting. That's not to tell you anything to discourage you, but, rather to be factual so that you can begin adjusting now. YOU KNOW you have something wrong. Be confident in that. The fatigue, alone, is worthy of serious investigation. The pain, alone, is worthy, also. Keep a dialogue in your own head: I have this and I WILL get some answers. If you are a faithful person, ask Him for guidance and comfort while you go thru this trying-time. These conditions are very hard for doctors to deal with. Remember all the "women's diseases" like depression, hysteria, menstrual pain, pms, alzeimers (sp?)and on and on- no scientific investigation was conducted on these conditions for years- we were just blown off for decades as the complaints were all in our head... Not to bash any guys- for female professionals were just as bad at dismissing us. Anyway, rheumatology is a brand new field and not many trained professionals. the regular docs are not even aware of this stuff. Thank you, Jesus, that my internist is "up" on the latest trends and at least knows when to refer. He knew that my puny symptoms "could" be autoimmune, he didn't think so, so he sent me on to a rheumie. About 7 years earlier another GP had dismissed my symptoms as (I quote) "being too pretty to be so fat"
hmmmmmppppp! so there you old quack!
You're going to be fine. It's just gonna take a while. Keep your Mom searching and learning with you. You'll need a strong advocate. Begin to journal your symptoms. I found that I was beginning to forget a pattern of pain that I was having and the log I kept really helped answer the doc's questions when I finally got to see her.
We are here for you!
Jeri

Finally some results!!
I went to a new doctor because I wasn't satisfied with my old one. She listened to my symptoms completely, asked questions, and sent me for blood work.
Three days later.... They said everything came back normal except my thyroid test. I have a low thyroid.
I asked my old doctor to run a thyroid test on me the first time I saw her because my mom, my aunt, and my grandma all have thyroid disorders but for some reason she didn't.
Everyone thank you for helping me through this. It's nice to have some answers finally. I'm starting medication today and getting copies of ALL my medical records http://www.healthboards.com/ubb/smile.gif Thank you all so much!

yeaaaaaaaaaaaaaaaaaaaaaaaaaa, Ready! That's the kind of news we all wanted you to hear! Good for you for being strong and "ready".
best wishes to you as you get your thyroid back under control
Jeri

Wow.....that's great!!! Not that a thyroid condition is great, but hopefully easier to control than Lupus. Just remember, if they don't treat you right & take you seriously, you've got it in you to stand up for yourself. If you need that extra push, we'll still be here for you. Take care & come back and update us once in a while now that you'll have all that new found energy (once you're regulated that is), Ann

Thank you both for the tremendous support!! You've both been huge helps!! Best wished to both of you two http://www.healthboards.com/ubb/smile.gif
I'm sure I'll pop in here every once in a while http://www.healthboards.com/ubb/smile.gif