View Full Version : Crazy??

06-05-2008, 07:34 AM
I will apologize in advance if I am posting in the wrong category. I am fairly new to this board.
Quick overview, no diagnosis yet, but suffering from face rash running down my neck, sometimes it is bright red and other times my skin is it's normal colour but still has all the bumps. Sore and achy joints more in the morning and evening. I did have a spell for about a week where I could barely move. Went out in the sun for 5 minutes and broke out in a rash on face, neck and chest in 5 minutes. Unbelievable exhaustion, some days just getting myself up the stairs is so difficult, I have to take one step at a time.

My ana tests are okay, but my doctor said he will probably put me on plaquenil next visit (June 12th). He said sometimes women get these kind of symptoms and we will try plaquenil and see if I get any relief.

I am feeling very down the past couple of days, broke out in tears last night because I was so exhausted, I had heart palipatations, flutters, heavy limbs and a bright red face to boot. I feel like I am going crazy, no diagnosis or the (women get these things) is all I get. I know I am not dreaming these things up, they are there and real.

I am just feeling sorry for myself and thought I would post here where people understand.


06-05-2008, 08:12 AM
Hi Karen....

A big hug...feeling sorry for you is fine. I have many pity parties and I am the guest of honor. I find a good sob, crying for me purges the mind and we can move on...so let it ALL out...

Letting out reminds me of the movie The Green Mile where he would inhale and the yucko and exhale in a flurry the gunk. Exhausted from the cleansing and fall asleep.

Women get these things... :shock: Hummm. And what do they call it when men do..humm. S/he is attempting to treat your symptoms and that is a good thing on the 12th. So, it seems s/he doesn't doubt you...so don't question yourself..June 12 will be here soon...Plaquenil work fast for me, five weeks I think it was...and for some 5 months...

Hormone fluctuation? Perimenopause?

No, you are not dreaming, nor making it up, don't doubt yourself. Arm yourself with knowledge..read more.

Since IT mimics many disease they have to begin to rule out what it isn't...then the diagnose will come. Process of elimination...a long process. Because 95% of people with IT has a positive ANA that doesn't mean you are not apart of the 5% that has It with a negative ANA...Nor having a positive ANA means IT...maddening, but be patient...

Sounds like you have sun sensitivity...photosensitive. Follow the link for more info..

Till then keep out of the sun, use sunscreen. SPF way high...cover if going out. Try to avoid the sun between 10AM - 4PM.

Drink fluids...clean fluids. 100% juices. H2O
Avoid prefabricated food, food in colorful wrappers which usually is junk.
Colorful food, greens, reds...fresh food i.e., spinach, melons, peppers..
Fish..fresh salmon, canned salmon 4 times a week
Whole grains...
Walnuts, almonds..
Avoid artificial sweeteners, Splenda is okay.
Exercise lightly, stretch, yoga, pilates or swim.
Cook with olive oil...

Ask your doctor if it is okay to supplement with fish oil and a multiple B vitamin.

Till then calm your body, relax..stress works against the body, healthy or not...contributes to inflammation..so breathe, deep breaths...

Head hug,

06-05-2008, 02:22 PM
hugs Karen...

Part of the emotions is that this is all still sinking in. You have to find out how you are going to cope with all this. And you will...it just takes time to get to know what you can and cant do and to figure out little ways around things.

And doctor's making dump assed comments like that doesn't help. Be patient with yourself ... :)

06-05-2008, 02:26 PM
And remember.....YOU ARE NOT ALONE!
There is not one single person here who does not understand how you are feeling or who is not willing to be here for you. We've all been to that place at one time or another, so we know what you are feeling is real.

Come to us at any time, we are here for you.

Peace and Blessings

06-05-2008, 07:39 PM
Hi, Karen. Others have given you such good advice....let me just add my own encouragement. You are NOT crazy....lupus (and other diseases like lupus) can sure make you feel that way sometimes. We ALL know how that feels. I'm happy to hear that your doctor is going to begin treating you with a drug that is usually very successful. It's just too bad that you had to hear the "women get these things" nonsense.

Keep track of your symptoms and don't be afraid to tell your doc about anything - sometimes the more insistent you are, the more likely they'll pay attention.

Post anywhere you'd like....someone will always be around to reply. I hope tomorrow will be a better day for you, Karen.


06-06-2008, 06:31 AM
Thanks everyone for your warmth, welcoming and supportive comments. It is wonderful to know I can come here and know that someone will always be there.
Oluwa, he has tested my hormones and nothing has shown up out of the ordinary, I thought I was starting perimenopause, the night sweats, foggy brain most certainly mimic that. I am keeping track of everything, each day I write down in my book what has happened since my last visit and hopefully this will help bring me closer to a diagnosis of something. Since my last visit new symptoms have been sores in my mouth and nose, breaking out in a rash when I was in the sun, extreme exhaustion.
Have a wonderful day & weekend!

06-06-2008, 09:55 AM

I think it is just IT and it's cronies that causes the night sweats. We are all different ages and most of experience the night sweats. Mine use to be really bad...so wet I had bed sheet indentations in my skin. Waterlogged..PJ wrapped up around my neck like a wringing wet scarf....

My hormone test too were normal for my age...46 at the time..currently 47. No menopause, but yet no monthly main event...

Since being on Plaquenil I haven't had a nose ulcer...so that will be a plus when they start you on it.

How are you caring for your sores? Maybe a little lube in the nose, vaseline. Mouth rinse with salt water if it isn't a open blood sore. I read recently if a blood ulcer, tip a Q-tip in hydrogen peroxide and dab it on it...

Every little detail, symptom will help with the diagnose, so it is great you are keeping a journal. May get tedious after awhile but stick to it. S/he will decipher through it for significance.

You have a wonderful weekend. Happy TGIF....

Till you get a diagnose, relax and care for you...like you would another..

Be well.

06-08-2008, 01:38 PM

I hope you're feeling better today! It is so frustrating, but as the others have said, you've got support here.

Oluwa has given you some excellent advice on diet, exercise, and watching out for the sun. Of course, I'll add .... wear a hat with at least a 4" brim any time you're outside if the sun is above the horizon. Even with sunscreen the hat makes a huge difference. (OK, so I'm biased :roll: but really - a solid hat makes a difference in how I feel)

Many hugs dear - you are NOT crazy, you're merely human like the rest of us - -

06-20-2008, 04:36 PM
Warm wishes from hot, dry Calif. 8)
Keeping a journal is one of the best things I have done since my diag. 3 years ago. I date it, keep track of all meds, including over the counter. and how well they worked for me.
Is your doc a rheumatologist? You may want to look into finding one if you can.
Keep your chin up, Kim

06-21-2008, 05:13 AM
Hi Karen,
Wecome to the forum. I hope that you can get the help that you need and no it is not something that happens to all women. Some doctors are jerks. Have you seen a Rheumatologist? You know though that Plaquenil takes a long time to kick in and work real good. It took nearly 6 months for it to work real good for me. It is not normal to have a bad reaction to the sun. God Bless.