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elvaisabel
New Member


Date Joined Apr 2011
Total Posts : 3
   Posted 4/27/2011 2:45 PM (GMT -6)   
Hi my name is Elva, I live in Anaheim California, I was diagnosed with lupus 2 months ago, it came to a suprise to me.... the only sympthom i had was always been fatigue... but since ive been diagnosed my whole body totally changed i went from been a happy person to  been sad, depressed, and more tired then normal.... a month after my diagnosis i started feeling better... i had that living life to the fullest type of attitude but now im always tired... very sleepy... very dizzy i just want to throw up thats how i feel alllllll day.... also the major one is i feel like im out of breath i have to take  a deep breath in order to feel like i have enough air in my lungs i dont know if its because i have had a stuffy nose for months but all these sympthoms are really stressing me out i feel like my body is giving out... once in a while ill have joint pain but when i do have its horrible.... i work at a doctors office and im constantly hot and sweating.....i feel like im falling apart...i dont know what to do....i do have 2 beautiful babies and im always happy around them but when im alone or at work i feel horrible.... my rheaumatologist doesnt seem to help much...i try to talk to him about everything but he says ill be fine which i want to take his word but when i feel this bad i just want to lay down and sleep so i dont have to deal with anything.... but most of the time im a happy person i dont know if im going to flares or what it is all i know is that i feel sick rolleyes , there isnt that many people i can talk to...its hard for people i know to understand my condition its a constant struggle....

elvaisabel
New Member


Date Joined Apr 2011
Total Posts : 3
   Posted 4/27/2011 3:32 PM (GMT -6)   
tfofd
Before my diagnosis i had lost 13 pounds i was jogging in the mornings and of course in the sun but when i would get home i would have the biggest headaches and would feel nausea but i thought its the work out, i didnt think to much of it i really want to get back into the work out routine i always feel so much better after a work out but when i try doing cardio at home since i cant go out in the sun im throwing up during the work out...im amazed how much my body has changed since the diagnosis or maybe i already had all these sympthoms i just chose to ignore the sympthoms until it comes to light u have a condition and thats when u think about how your feeling.... i did tell my rheumatologist i had trouble sleeping and he asked me what was i afraid of....or why am i stressing.... i was suprised by his question... i read about lupus on the internet he never told me about it all he told me was i cant be in the sun and get plenty of rest and he will see me in 4 weeks thats it so if im reading about lupus online u find all kinds of scary things so of course im going to worry.... the doctor i work with has aknowledge more than my own doctor.... but so far sleeping and relaxing is the only thing helping me right now but daily life u got to make a living and be a mom its hard to get a good night sleep or even rest

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/27/2011 5:03 PM (GMT -6)   
I have trouble sleeping too--never have slept more than 3 or 4 hours a night in several years now... can you try a sleep aid perhaps? Ambien helps me at least get a couple hours and I never feel "hung over" from it... I also try hard to keep a schedule to bed and lights out and comfortable, etc... but I know its hard because I still never sleep too long (last night it was 5:30 am and only about 1 1/2 hours sleep...). Maybe the AI's cause it? Maybe steroids? I hope you get more rest and hope you start feeling better! Nicki

panther fern
Regular Member


Date Joined Feb 2011
Total Posts : 163
   Posted 4/28/2011 1:14 AM (GMT -6)   
When you first get a diagnosis... there are different stages for people, mourning the life you had before, or denial, or i am going to fight this or whatever. when i looked up SLE.. the first sentence said... THere is no cure. I am very type A. i like control. I want to do what i want to do when i want to do it like go to my kids sporting events or clean my house or simple things... It is a huge slice of humble. I like being outdoors not an indoor girl at all. basically allergic to what.. the sun. huge lifestyle change.. and it is like you have a wacked out thermostat i can walk from my house to my front porch and with in 3 minutes if the sun is out and it is above 70 I feel faint, dizzy like i am going to throw up and i start itching and my butterfly rash pops even more than usual.

Being educated is good. being your own patient advocate is great. But exhausting. Find a rheumy that is going to listen and connect with you, the first med i was put on was methotrexate, it helps a ton but there are some down things to it as well. you have to get your blood checked once time a month. to make sure your liver is happy.
I would also say don't read every bad thing that can happen on every med you could take, take a med try it if you have a side effect then read then say ok this isn't for me that way you know whether it is the medication or if your mind is giving you a symptom.

Being diagnosed with something that changes a lot about how you do your life, can take its toll, don't let it be your life. As much as possible... when you are in a flare it is nearly impossible for it not to be the center of your life I have been sick 15 years SLE is just one of my personalities.lol

I would highly recommend learning how to slow down, relax, how to conserve energy on your good days don't over do it. routine is important.
Best wishes... If you need help with sleep i tried all sleep meds. I finally went to Klonapin a low dose it is a mild anxiety med it worked better for me than any ambien or anything... also over the counter... Melatonin... natural sleep aid works well and so does sleepy time tea with valerian root and melatonin.

I am all for prescription medication but the less you can take the better.. things that help me also is physical therapy and massage.

Keeping all of you in my thoughts and prayers for more healthy days than not, make memories and enjoy the simple things in life.

elvaisabel
New Member


Date Joined Apr 2011
Total Posts : 3
   Posted 4/29/2011 11:22 AM (GMT -6)   
Nikis, Panter Frn
I am an ambien it helps alot.... i really need the sleep i believe after i sleep i feel better so much energy....the problem is since i work from 9-6 in a doctor office and theres no AC its always hot in here i sweat so much and become more tired and now my mouth and lips are completely dry!!!!!! and i feel more dizzy then ever im drinking alot of water but im pretty much throwing up the water now i just cant breath im gasping for air ....on wednesday i went my primary doctor for urgent care and the wait was 3 hours!!! i couldnt sit there and wait i need to get home to my kiddos after waiting an 1 and a half i gave up...i feel so dehydrated right now...do you guys think i should try going to my doctor?? im off early today so hopefully the wait is not that much...i just cant go a day more feeling this dry mouth, dry lips, dizziness, fatigue and the lack of air....i hate this feeling! and i have a wedding to go tomorrow im a brides maid i dont know how im going to survive and especially in the sun.... its nice to know that i have people like u 2 that are going through the same thing it makes me feel that were not alone and that there is people that do understand what were going through .

Panther i look up to u for ur great attitude even though u have the tuff struggle u manage to make it...i really hope with time im able to manage it as well as u do...i know its only been 2 months since my diagnosis i feel very well guided by all of you...i will keep u as well as everyone in this forum in my prayers God bless u guys
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