View Full Version : Hi I am new to the forum

05-26-2008, 02:14 PM
Hello. I am new to the forum.
I am 26 and I feel like I have always had a butterfly rash. My earliest memory regarding it was when I was 13 and a boy from church said to me "you could be a model if your face wasn't so red." This past year it was diagnosed as rosacea, however for the past three weeks I have been sooo tired and sore. I have had a few days during this time that I felt well enough to leave the house...but only a few. I sleep most of the day and when i do get out of bed it is only with the help of motrin. I thought I could have lyme disease (I had a weird bite with a circular bruise) but my blood tests came back neg for lyme and a high ANA. I have a month before I see a rheumatologist.
The more I read about lupus-it makes more sense that its what I have. Kidney stones, bursitis, chronic headaches, neck pain... I had mono last year and "relapsed" twice with it but maybe that was due to lupus.
I look forward to browsing through this site. I would love any advice about how to manage the pain and stress. Anything would be greatly appreciated. I am supposed to start grad school in the fall and am freaking out that it is now physically impossible. Is it possible to bounce back in a few months from this? How long do these relapses last? Nobody wants bad news but I need to be realistic.

05-26-2008, 03:56 PM
Welcome Emmy

It is possible for you to be feeling better in a couple of months. But it's hard to say what will happen.

Sounds like you may be in a flare, flares can last days, weeks or months. There's really no set pattern.

Symptoms can vary from person to person as well.

I'm not diagnosed yet. My mother had lupus and my sister has it. My family doctor keeping an eye on me, and the rhuemy I see doesn't believe in lupus (big eyeroll).

The family doctor is watching my blood work.

Best advice I can give you is eat healthy foods, get rest when you need it, try to find effective ways to deal with your stress (stress can bring on symptoms) and exercise.

The healthier you can keep yourself the better off you'll be.

I'm sure the others will be along to greet you soon. This is a very friendly and supportive site.

Welcome and glad you found us :)

05-26-2008, 05:39 PM
Hello and welcome. Sorry you are having a tough go of it lately. A postive ANA doesn't mean lupus. It could mean any number of things.

My only suggestion is to sit down and make a list of all your symptoms before your appointment. Even things that seem unrelated.And not just things that are happening now, but things that have happened. They need a full picture of your medical history. Even things you didn't take to the doctor maybe of importance. Difficulty breathing that might have happend one day and never came again, rapid heart rate or heart flutters, ect. The reason for the suggestion of writting them down and taking them with you is that many of us suffer from short term memory loss or "brain fog".

I hope that you find answers sooner rather than later, and that you find relief :)

05-26-2008, 07:24 PM
Hi Emmy,

Sorry to hear about the problems you've been having. I too had many odd, seemingly unrelated health problems and symptoms. And like you, I started reading and researching until the pieces of the puzzle one day all fell into place. I was diagnosed with Systemic Lupus in 04. My Mother has been dealing with Lupus for many years, and is in remission. At first, Lupus didn't seem like a real possibility for me, since I'm a guy. Well, I learned SLE is not only a "woman's disease". The fact that you are taking charge and learning about possible causes of your symptoms is a good thing. Trust what your body tells you. I just knew there was someting going on with my health. All the strange, and sometimes scary symptoms I was having had to be more than just "in my head". Be persistent, as you are your own best advocate. What Sits in the Corner says is very true. The patterns of flare and remission vary widely, and no two people are alike in symptoms, or eventual outcome. Yes Lupus can be very bad. But you need to know that's not necessarily the rule. Many people are able to manage the disease, and live a quality life. A good stress reliever for me, is to come here and talk to others who I know understand what I'm going through. I do my best to surround myself with people who at least try to understand. I stay away from negative people, especially ones who would say things like "it's all in his head", or "he's just a lazy attention seeker". It's not all in our heads, and what others see as lazy, is actually the extreme fatigue so many of us have to deal with. It sounds like you are dealing with that right now. Many days, I feel as though I'm made of lead, like a big heavy wet blanket is holding me down. But, I have good days as well, and have learned to enjoy them when they happen. I hope you can find an answer as to what's causing your symptoms. There are some really nice people here, and there is excellent advice from our many members as well. I'm glad you found us. Welcome!


05-27-2008, 07:48 AM
Hi Emmy;
Welcome to our family. I see that you've been given excellent advice and a warm welcome from Rob, DebbieE, and Sits-in-the-Corner. They are absolutely correct in telling you that there is no way to predict how long a flare will last. Also, with medication, healthy eating habits, appropriate lifestyle changes, etc., it is possible to manage this disease and maintain a relatively normal lifestyle.
Everyone here is more than happy to give you advice, answer your questions, give you support and make sure that you know that you are not alone!

Peace and Blessings

05-27-2008, 06:33 PM
Hello, Emmy. Just wanted to add my welcome and to tell you that you've come to the right place to learn about lupus. Lots of great advice here, and people who care. I'm glad you found us!


05-30-2008, 01:23 PM
Hi Emmy...

Don't freak out, IT loves when we stress. IT thrives on it...so be calm, deep slow breaths in and out...

Just manage your time, your activities with rest. I always say...make a list for what you want to accomplish today then cut it in half.

Eat and sleep for your health...

Mind the sun..with SPF 50 and above on all exposed skin. Try to avoid the early afternoon sun. After 4 PM is best...

Avoid alfalfa sprouts.

Avoid artificial sweeteners...Splenda is fine..

Stretch, try swimming, yoga, pilates...keep joints safe..no jogging.

For OTC pain medicine Aleve, Advil, Motrin...Tylenol..

My Rheuma prescribed CoQ10 for fatigue. I am giving it a go again...last time I fizzled it and got bored with too many pills..

Complex B Vitamins...helps with stress. Stress robs your body of these important vitamins..

Try to maintain some sort of schedule, routine, so you don't get into a rut, the slump, the blues.

IT has no schedule when it will appear or disappear, but you can try to manage IT by being kind to yourself..listen to your body, rest, move, eat properly.

Realistically...Flairs without Sudini Boots can last for years or a day or a month. I've been through the on and off, day thingy for months..and hard cored by IT for 5 months straight.

I've learned, and still learning...one day at a time, be kind to ourselves....

Keep looking for your wellness