Posted 6/11/2007 9:04 AM (GMT -6)
Hi Mariela, I also wanted to welcome you. I'm sorry to hear about your recent health problems and that you don't have any answers yet - it can be very frustrating. I want to emphasize what redrose told you about trusting your instincts about what its going on with you - you live in your body and you are the expert on it. I also want to encourage you to give the plaquenil a chance. Like redrose said, it can take quite a while to build up in your system enough to reach therapuetic levels. It's a great med to be on if you think you might have lupus because it is usually the first line of defense against lupus and can help slow the progression of the illness.

Please feel free to ask any other questions you have.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


Posted 6/11/2007 10:52 AM (GMT -6)
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
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Posted 6/11/2007 3:06 PM (GMT -6)
Wow! Such great replies, i thought it was a pointless post, but you guys here are making me feel very welcome, and thanks you redrose because your advice was like none if ever been given before. and all of you too. Now im a little scared, cuz i said i stopped taking the plaquenil, and my mom doesnt know that, but after reading your replies, im gonna keep taking it. in fact, im popping a pill into my mouth right now. yes, my mom has lupus, and she used to take prednisone and now she is taking plaquenil, she had some heart involvemnt when i was born, and she almost miscarriaged, and she has arthritis, and all the other symptoms i mentioned in my post. here ANA got positive a little while ago, because hers had been negative for some years now, so i guess she is out of remission. iv had the ANA test like three times now, and its always negative. my RF is 2 points away from beinng considered mild arthritis, but i guess the doctor didnt do anything about the joints because it was really mild inflammation, which i dont think makes sense because i have extrem e pain at times, sometimes during the middle of the night, theyre like shocklike, and shooting pain, in my wrists, elbows, ankles, knees, and sometimes the middle of my thigh. my muscles twitch like all the time, i see it moving its so freaky, and sometimes my thumbs starts twitching. also, im having sore muscles for no reason when i wake up in the morning, that has happened about three times already, but the doctor is only making me take half a pill of plaquenil every day. its so frustrating. ive had two head mris because i have alot of migraines, almost daily, and it was negative, and my rheumy didnt even diagnose me with migraines or gave me painkillers for that. because OTC never works for me. oh yeah, and i told her i was tired all the time, and she said it was just stress from school. now that school has been over for the past two weeks, my symtpoms are the same or worse. i hate when they say its stress or that im depressed. okay well im venting lol anyway thanks for yalls great replies!
Posted 6/11/2007 3:28 PM (GMT -6)
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.
Posted 6/11/2007 5:41 PM (GMT -6)
Mariela, I'm so glad that your MRI's were negative. Do you have a primary care physician? Most PCP's are Internists and are basically specialists at diagnosing whatever problems you have. Given the insensitive manner your rheumy seems to have treated you, I'd be tempted to go to a PCP for an evaluation. There have been many advances in the treatment of migraines and a good doctor will help see to it that you don't suffer from so much pain. If you take birth control pills, stop. The combination of birth control and migraines can lead to strokes. Your PCP can also recommend another rheumy that might be more sympathetic towards your physical symptoms.

Redrose gave you some great advice! Remember, we're here not only for information and advice but also for moral support. I'm happy you're here among this terrific group of people. We understand what you're going through and we want to help.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Posted 6/11/2007 11:14 PM (GMT -6)
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!
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted 6/12/2007 12:08 AM (GMT -6)
I want to give you a few words of further advice. Especially since you say you get migraines frequently. Migraines can cause permanent damage, stroke, or even death. Migraines are dangerous and should be taken seriously. First if you take tylonol or the generic form regularly stop as it may be half your problem. Second ask your pharmacist who filled your prescriptions first but I suggest you begin takining a single baby asprin every single day. From your post I think you may be at risk of a blood clot and if your blood is especially thick it can cause migraines. Baby asprin mildly thins the blood. You need to tell every doctor you see you take this if the pharmacist says it is okay with your meds. I say ask the pharmacist because I hate to say it but they will catch drug interactions long before your doctor will so make friendly with your pharmacist whomever he or she may be. Third do not worry so much about labeling what is wrong with you and worry about treatment, labels may make certain things harder later in life like getting life or health insurance. Treatment is more important anyway because that is all that matters. Know that left untreated autoimmune diseases can kill. You need to see a neurologist right away a normal MRI/CT scan or the brain means nothing when it comes to migraine. Migraine means taking daily preventative medication as well as having a medication on hand to treat the acute attacks. I came close to suffering serious harm from a migraine and so I studied all the information available. Migraine is a serious disease and raises your blood pressure, it can cause stroke, brain bleed, even death in extreme cases. Some people suffer brain damage before they realize it. The thing is migraine is caused by changes is blood flow to the brain and this changes the amount of oxygen available to each area. Areas deprived of oxygen can suffer damage or even die. You said you had some kind of clotting issue come up. If it is the one I suspect then your migraines may be contributed to by thick blood. When the blood is thick it has trouble running through the smaller vessels of the brain. I am not trying to scare you but you need to take this seriously. Please listen to your body's cries for help. Seek out medical attention. From now on do not try and suffer through migraine without medical assistance. That is dangerous and even foolish. I am not saying anything about your intelligence- most people are clueless about how dangerous migraine is- heck many doctors do not realize because they fail to read the newer information. I know only because of how close I came to being a statistic. I wish you luck and hope you will always listen to your body and try and do whet is best for it. Also nutrition affects the immune system more than you could ever imagine. Eat properly or you will come to regret it- believe me I learned the hard way. Rest when you need to even if it means taking a nap. What others say matters not. What your body needs is what is important. TAKE CARE OF YOURSELF AND YOUR BODY YOU WILL BE TOGETHER FOR THE REST OF YOUR LIFE.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

Posted 6/12/2007 8:31 AM (GMT -6)
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
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


Posted 6/13/2007 4:14 PM (GMT -6)
You guys are much help. I appreciate you taking your time to post. You know what mostly bothers me of all this? It's the fatigue. I feel so tired all the time and ppl think im depressed. Im gonna work at the hospital as a volunteer and all idid today was go to a 15 mins orientation and come back home, and i was so pooped i felt like i had just come in from a long jog or something. i feel so tired, and i dont have anemia or anything. according to the tests ive had. I'm perfectly health, besides the raynauds. The best i could get was an appt. for a neurologist for end of july. Is that okay? or is that too long a wait?
Mariela
Im 17 years old
 
Diagnosed: Raynaud's, IBS, GERD, Hiatal Hernia, Kyphoscoliosis, Chronic Gastritis
Medicines: Plaquenil, Trental, Prevacid, Zantac

Posted 6/13/2007 5:10 PM (GMT -6)
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.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Posted 6/13/2007 5:52 PM (GMT -6)
Mariela,

Welcome sorry that you are so sick at such a young age. I too have had all the test and them come back normal' it is a pain in the you know what. I know that there is something going on in my body and my b/f finally admitted last night that he knows it's not in my head. So do waht all these wonderful people tell you and don't give up.

This is a great group and emmi said we all vent it helps to get through things and it's great to still laugh though.

Veronica
Posted 6/13/2007 11:51 PM (GMT -6)
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
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted 6/14/2007 5:42 AM (GMT -6)
I totally understand the fatigue issue. I hate the fatigue. I used to be the most active person I know now I sleep all the time it seems.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

Posted 6/14/2007 8:28 PM (GMT -6)
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.
Mariela
Im 17 years old
 
Diagnosed: Raynaud's, IBS, GERD, Hiatal Hernia, Kyphoscoliosis, Chronic Gastritis
Medicines: Plaquenil, Trental, Prevacid, Zantac

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