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hi everyone,

i am having a really bad day today. i went to the docs last week and told her i thought i have lupus. she saw my butterfly rash that day, as i sat in the sun for about an hour before the appointment. upon looking at my history of complaints, past lab results, and the symptoms i had that day, she all but said she thinks i have it too. my past ana test was negative, but i was also having a decent day when the blood was drawn. this time, i was having a bad day, and she drew my blood for another ana test. not sure how its gonna come out this time, but she did mention that i may have negative ana lupus, and eventually, it may come out positive. she is also sending me for a sleep study and an eeg, because i've been having what we think are seizures. also, i have 5 of the 11 criteria of the major lupus symptoms, and thats not counting all the other ones.

Other symptoms are:
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out
muscle pain and weakness
poor memory
poor circulation in fingers and toes
tingling in extremities
weight loss
abdominal pain
blurred vision
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat name a few

today was such a bad day for me!!! i felt horrible as soon as i woke up. i have such severe muscle and joint pain. my butterfly rash is really pronounced too. i have blister/hives on my upper back, neck, shoulders, and face. i was only out in the sun while in the car yesterday. i do suffer from photosensitivity, so i know to put on sun screen in the morning. i'm not sure if it was the sun yesterday that caused a flare or what. i am so miserable today!!! i have a fever of 102, severe fatigue, horrible joint and muscle pain, blurred vision, vertigo, nausea, vomiting, diarrhea, and just the over whelming feeling of feeling sick. even my hair hurts!!! i don't have the flu, i don't feel flu-ish, this just feels different. i am still waiting for my lab results, so i am not on any medications for lupus as of yet. i do take hydrocodone for my severe back issues, and even thats not helping with the pain today!!!!

do you think there would be any benefit for me to go to the emergency room?? i mean, what can they exactly do for me??? i don't have a lupus dx as of yet, but it looks like the doc is leaning that way for sure. what could the hospital do to make me comfy anyway, i mean, its not like i'm going in for something that can be cured!!! do you think the er would help me??? is there anything i should say if i go?? do i tell them i have lupus?? or do i tell them the doc has given me a definant dx yet?? is there a certain medication i should ask for to help me till i get to my doc on monday?? i can't imagin going through this all weekend. my flares seem to last forever, or just never go away. i couldn't even shave my legs tonight because i'm in so much pain!!! what should i do??? what would you do if you were me??? please help me!!!!

sorry if there are alot of typos, but my fingers are so weak and sore tonight!!! thank you everyone, i am so blessed to have all of you!!!

lots of love

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Rather than go to the ER, please try to call your doctor's answering service and tell them your symptoms as of today.  They may call in to your pharmacy a prednisone pack to get you over the hump.

Is it your PCP or a rheumatologist that you are seeing?  I'm really sorry you are feeling so poorly!  If the hydrocodone is not cutting the pain, I doubt the ER will have anything better.  But, if you get worse, then you might need the ER, but try to reach your doctor first.  Keep on check on your fever.  Have you taken anything to try and reduce the fever?  You may have some other infection going on that is not related to Lupus.
You should be taking some ibruprofen or aspirin around the clock along with your hydrocodone to help with inflammation.  It will help the fever as well.  Try soaking in an warm epsom salts bath.  That has helped me so much.  Try doing a bit of stretching which may help some of the muscle pain.  You should ensure you are getting enough potassium and magnesium (do start taking a magnesium supplement regardless).  That will also help the muscle pain.  I also get some relief from massage therapy.  Hope you get a break from the pain soon.

i called my doc yesterday, but her office closed early for the day, i just forgot about that. i am not currently seeing a rheumatologist as of yet, and i am not being treated for lupus yet. my doc said she suspects i have lupus, but she wanted to wait for my labs to come back. she ran another ana test on me, and she said that the ana test comming back a positive this time would make it alot easier for the dx. however, if the test comes back negative again, she said she would probably dx me with negative ana lupus. she also was running other labs on me, she said she was checking for something else too. even though she believes i do have lupus, she wanted to rule out everthing possible. i'm guessing that once her office calls me for an appointment to go over my labs, she will then tell me what the plan of action will be. of course i had to be hit with this flare on the weekend, ugh!!!!

i did go to the er at 2 am, and just like i thought, they did nothing. i was just gonna wait till monday and just suck it up over the weekend, but i had another seizure upon lying down in bed. this time, i didn't even get a chance to finish getting comfortably, i didnt even close my eyes yet, this is crazy!!! it just sent me over the edge, but like i thought, the er didn't help me at all. they said they were going to treat me for the seizure and not the lupus, since i was already waiting for lab results. i had a cat scan of my head, and they found nothing wrong. i asked them what i could do for the pain i was in. i tried taking a warm bath, my pain meds, and even some naproxins, but nothing helped. not sure what to do at all. i just feel like nobody cares or wants to help. the er doc made me feel like i was a crazy woman. like i was making it up, and i'm not. the er doc could clearly see the butterfly rash on my face, it is so pronounced. i had a fever of 102, it comes and goes. i have a rash on my upper body, but its not the discoid rash. my blood pressure was 168/94, and i'm on two different blood pressure meds. normally it great, but not last night, so my body was obvisously in distress a little. my knees and ankles were swollen and red, and a little warm to the touch, but i hurt everwhere. i showed them my mouth sores, and the er doc just blew it off. i told the doc, i was not in there for pain meds, but just to get comfortable. they took a urine sample, probably checking to see if i'm a junkie because i take hydrocodone for my back. i guess the mri showing 4 herniated disc's isn't enough!!! i have nothing to hide, they can check all they want to!!! so all in all, i went to the er, waisted 4 hours of my time, the doc treated me like i shouldn't be there and was lying, and was prescribed a muscle relaxer. the muscle relaxer is helping with the muscle pain because of twisting with a seizure, but not with anything else. so here i am again, sitting here wondering why i don't matter. wondering what i'm gonna tell my kids when they ask to play with me today and i have to say.....mommy is sick again, i have to take it easy!!!! then i have to see their little dissapointed faces, the sad faces of a 5 and 6 year old. i've had enough of this being sick crap, i'm only 30 years old, i've been sick on and off my whole life. i've been on deaths door like 5 times, but the doc could never point out why. anyway, thanks for listening to me vent, god bless you!!! take care.


Sorry to hear about all you are going through. Number 1 stay out of the sun. I have to say if you can find a doctor that will diagnose you when the labs are negative you are one step ahead and very lucky. It took me so many years to get a diagnoses and my labs were positive, with a fever every time I went to the doctor. So that is one small thing you have to be grateful for.

As for you children, down the road when you healthy again they wont even remember this so you need to stop feeling guilty about that and worry about getting yourself healthy so you can be there in the long run.

It is a long process to get the proper meds and treatment going so even though its really hard you have to have patience. I know its easier to say, right?

I just went through a period where they thought I was having seizures. There are still not sure if I was or not but I am now on seizure meds. Also now have had optic neuritis for a month in both eyes so vision is bad. Going to a new dr on wed for that. Getting a little scared now that my vision will never be the same.

You seem to have a great dr and that is half the battle. I hope they did a work up for your kidneys as that can cause your blood pressure to elevate too. Of course it could just be the the pain and everything too.

I wish you the best. keep us updated.

Take Care,
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