Huh? I dont understand...confused teen

Okay, well basically im 17, and my mother has SLE.

Okay, i was having some of the symtopms she gets...i.e. joint pain, numbness and tingling in fingers and toes, dizziness, headaches, sensitive to sunlight,, and more...Okay, so i go to the rheumy, and all tests are negative except one that says that my blood takes time in clotting or the other way around i cant remember. nothing was done. i had a bone scan because my knee hurt the most (almost every joint hurts in my body), and all that was found was mild inflammation, again nothing was done. i also told her i was having feelings of a skipped heartbeat for a couple of months now, and she swaid it was just acid relux, but those are new symtoms! she just gave me a antacid but i still have it.basically the doctor diagnosed me with raynauds, and gave me Trental for that, i think thats a bloodthinner, and gave me an antimalarial...Plaquenil. so, if i dont have lupus, why did she give me something that treats it? antimalarial? for what? thats what my mom takes for her lupus, so why do i need it? its not doing anything to help ease my pain, so i stopped taking it, and trental helped a bit with my purple fingers, but thats not really a big deal for me. so i went again to the rheumy because i still had pain, and she refferedd me to a neuro because now instead of some long lasting joint pain, i have random "shocks" throughout my body. she thinks it may be soething neurological, but i skipped the appt. because i dont want them to stick me with needles, and not find anything like usual. should i wait for it to go away? ive been about five months like this, and i dunno what to do. oh and is it right that i be in the sun alot? because i like to tan.

Plaquenil takes 6 weeks to a year to see full effects. You can lose fingers or toes from raynauds because it means the circulation to your fingers and/or toes is completely cut off for periods of time which can cause tissue death and even gangreen. You need to be seen and screened for everything. I got ill at puberty and went undiagnosed until 2005 right before my 28th birthday. I may not have organ failure but I am in horrible shape. Look at my signature and know that every single day I live with pain that starts at 4 on a scale of 1-10 and eventually reaches 8 or 9 before I go to sleep to escape the pain. I have no energy. I have had multiple miscarriages. I can barely walk. My bones are thinning. My rheumetologist has given up on getting me a remission and is instead focusing on giving me some quality of life. You do not want your body to suffer the kind of damage mine has. I have nerve damage and central nervous system involvement. I have lupus. I have RA. I have things wrong with me that no one is sure what it is still. Please do not give up on your health while you are still so young and have a chance to avoid ending up like me. I would not wish my fate on anyone. Life is torture. If I were an animal I would have been put down long ago. Because I am a human being I am forced to continue suffering- I do not wish to die but I would really like better care and treatment. I would really like to have a lot less pain. You have too many symptoms to ignore. FIRST MAKE A LIST OF SYMPTOMS SECOND TAKE PICTURES OF RASHES THIRD GET A DERMETOLOGIST FOURTH GET AN ALLERGIST FIFTH GET A NEUROLOGIST- lupus and other autoimmune diseases can affect the nervous system SIXTH SEE ANOTHER RHEUMETOLOGIST SEVENTH NEVER EVER GIVE UP EIGTH TRUST YOUR INSTINCTS IT IS YOU WHO LIVES IN THAT BODY NOT THE DOCTORS NINETH BLOOD TESTS CAN BE WRONG- all mine tests come back normal except the clotting ones and those only come back weird once in a while TENTH IF A DOCTOR DOESN'T LISTEN FIRE THEM AND GET A NEW ONE ELEVENTH GET YOUR MOTHER TO HELP YOU IF SHE WILL IF SHE WON'T THEN DO IT ALONE BUT NEVER GIVE UP TWELVETH NEVER LET THEM TELL YOU IT IS ALL IN YOUR HEAD THIRTEENTH YOU MAY WANT TO GET A MENTAL HEALTH EVAL TO PROVE YOU ARE NOT DEPRESSED OR MAKING UP YOUR SYMPTOMS AT SOME POINT IF THE DOCTORS ARE REAL JERKS FOURTEENTH WE ARE HERE TO HELP AND SUPPORT YOU IN ANY WAY WE CAN ASK FOR HELP WHEN YOU NEED IT AND NEVER BE AFRAID TO ASK QUESTIONS Always know that we know our bodies better than anyone else. Women often get blown off by medical professionals as depressed or emotional worse diseases that affect women more than men do not get the kind of research funding that they should. We need to support each other. You will need support if you are to keep a hold on your stability and avoid depression and hopelessness. Do not mistake my first statements as my being depressed, hopeless, or having given up. I am still fighting and will be darned if I will let this kill me. I refuse to give in. It may have taken more than 10 years (actually close to 15) to get a diagnosis and proper treatment but I still have hope that some how some way I will beat this thing. I am having a pain block done later this month to try and help my pain levels and mobility. Still you need to get treatment as soon as possible because the faster treatment begins the better the outlook is. You may want to look at www.lupus.org and www.butyoudontlooksick.com and also try reading THE LUPUS BOOK by Dr. Wallace. I wish you luck and hope others will come by with advice to add to mine.

Hi Mariela,

   Another welcome to you! I'm sorry your going through this at such a young age....((Hugs)). I started having symptoms of lupus when I was 19, but wasn't dx'd till I was 32.

   Redrose gave you some great info. Keep searching for answers and relief. It sounds like your doctor is treating your symptoms. Hopefully, you will start to feel better soon.

  Hang in there and please keep us updated. Ask all the questions you want. We will help you in anyway we can. This is a wonderful group of people.

  Take care and know that your not alone in this. You will find alot of support here. You will be in my thoughts and prayers.

                                                                 Babs

Hi Mariela, I wanted to add my welcome. Redrose gave you good advice about keeping track of your symptoms and writing down everything, taking pictures, etc. You will find that many of these unconnective tissue diseases work like a puzzle and you have to give your doc all the pieces to see the picture. Hopefully the Plaquenil starts working for you. I also think that was good for him to give you so at least you can start being treated.

Take Care

Hi Mariela,

Your post really hit home because my 19 year old daughter has a positive ANA and renaud's, so I worry about her health. Two things I'd like to mention.

First is exactly what Hippimom said in her post. Plaquenil is often given not just for your symptoms, but to keep whatever you have from getting worse. These diseases often progress, and if you can stop that from happening now, while you may not know it's happening, it might be the best thing you've ever done for your body.

As far as sunbathing, please consider the fact that the sun might be your worst enemy and can make you very sick. And tanning booths are worse than the sun. It has been proven that too much sun is bad for even the healthiest people, but for people with lupus it can be devastating to our health. Most of us who want a tan use self-tanning creams or sprays and they work real well.

You mentioned that your mom has lupus. Are her symptoms bad? I hope you can talk to her about what you're going through because she can surely understand what you're going through.

I hate it that you're experiencing all of this at such a young age. Take care of yourself now so that you can be healthy for the rest of your life!

Pat

Mariela
I just read your post and glad that you find us. I want to welcome you, and do not be discouraged. Come here often and you can get lots of supports and info. I am no doctor, but your symptoms do sound like lupus or MCTD/UCTD. I would also suggest if you want to change to another Rhumty instead. Hang in there. I am also diagnosed when I was 17. If your rashes broke out and if you can get to the rhumty or PCP immediately, go right away, so that they can see. If not, take a pic and let them see. All kinds of weird symptoms that you can take pics, take them--a clear one.

Hi Mariela,

I just got finished reading all of the posts on this thread--Wow! I am really glad you got such great advice from everyone. Most of all, I'm glad you decided to take the plaquenil. It is a frustrating little pill to take because it is difficult to tell if it is helping or not. The only way you ever hear about it working is if someone has had to stop taking it for one reason or another. Then the cr*ppy way they begin to feel after they aren't taking it shows them how much it was helping!

It sounds like you are hurting a lot. I have migraines, too, as do many others on here. Mine started when I was 7. Do you have the aura (visual disturbances) before the headache starts? Do you get sick to your stomach? Really try to get your mom to take you to your regular dr. and ideally get a referral to a neurologist to get treatment for them. I never did (I'm 52 now, so "way back then" kids didn't really go to the doctor for headaches); in fact, it wasn't until I was in my 30s that I talked to a doctor about them. There's no need to suffer!

Redrose gave you great advice. It's hard since you are still a minor, but maybe even print it out and show it to your mom. She's probably heard some of the same stuff like "you're probably depressed" or "it's stress" and she really probably hates it that you are starting with all the same stuff that she has had.

I'm really glad you found us. Hope you keep coming back. Keep asking questions. Keep us up to date on you. Keep venting here. We're good listeners and we like to help!

xoxo emmie
PS We like to vent, too and once in a while we get goofy and laugh too!

Mariela, I just had to add a little something about docs passing your symptoms off as stress and depression. That was one of the most frustrating things I faced when I first got sick and docs weren't sure what was wrong with me. I kept telling them the only reason I felt down or stressed was because I felt so sick that I could no longer do the things I enjoyed. I'm glad you started the plaquenil again and I hope that in a few months you'll notice a difference with it. I hope you'll continue to post here - we are here for you. Take care

Mariela, The fatigue is what bothers me the most too, and I suspect you'd hear that from most lupus sufferers. I'm 58 and I've never had anemia. The plaquenil may help some with that.

If you're worried about waiting until the end of July, call the neurologist's office and ask his nurse or receptionist to put you on the waiting list. Unfortunately, there are usually only so many spots for new patients but unless you're having a medical crisis, six weeks may not be too long to have to wait to get in to see a neurologist. What a way to spend the summer, huh.

We hear this all the time, but it's true: get plenty of rest, eat healthy food, and exercise even if it's just light walking. And if you can, stay out of the sun. Hippimom can tell you that when she takes her kids to the pool, even though she's lathered up, covered up, and in the shade, she still will experience more than her usual amount of fatigue for a few days afterwards.

I'm so glad we haven't scared you away with all of our advice, Mariela. Oh, I think we all hate the being so stinkin' tired the most. We even hate that more than hurting, at least I do. And compared to you we're pretty old! Well, some of us anyway. (Now a lot of the others are goin' speak for yourself emmie. That's because I'm 52 and they know I've got a couple of the cutest grandkids evers and they are a decade or two or so younger than me. Although there's a few in my age group here too

Anyway, about all you can do about the fatigue is read about the spoon theory on that link you were given way back up on the thread. Then start figuring out how many spoons it takes you to do what. The tricky part is that some days it might take you say 3 spoons to get through your typical morning but on another not so good day you will use up 6 spoons! We all struggle with this.

I am finally figuring out that I need to take breaks whether I think I need one or feel like it or not. That seems to help me from reaching the really horrible point of no return or hitting the wall.

Remind us....how much plaquenil did your doctor prescribe for you? It can take several weeks to a few months for it to reach it's maximum potential. In fact, it's so gradual you might not notice it. But don't quit taking it....maybe I already said this. Sorry. It's late and my lupie brain might be taking control so I'll say good night to you. Hope it's a better day tomorrow. Glad you're doing some volunteering this summer; hope it's enjoyable for you. Keep us posted on it.

xoxo emmie

Wow, im volunteering at the hospital and today was my first time up on the oncology floor, and really, like I feel completely healthy next to them.. It's so scary up there, but then again, i want to be an oncologist so id better get used to going up there once in a while. about the plaquenil, my doctor only put me on half a pill daily. And i started taking it early march and i felt no effects the first two months, so thats why i had stopped. I'm so impatient lol Like right now every joint hurts, its like sharp tiny shocks all over my body. If i go to the neurolgist... (mind you ive never been to one in my life), what will i expect? Whats the worst that could happen? Thanks for all your posts.