View Full Version : Stress and Lupus

10-16-2005, 10:16 AM
Does anyone here know if stress can be bad for lupus patients? I am so depressed and stressed out. I don't want to be here anymore!!!!!!!!!! I can't take it anymore!!!!! I can't take all of this pressure on me!!!!! I CAN'T FREAKING TAKE THE PRESSURE FROM MY JOB ANYMORE, I CAN'T TAKE SCHOOL ANYMORE, I WANT A BREAK. MY MIND IS CLOUDED!!!! HELP!!!! I DON'T WANT TO BE HERE ANYMORE!!!!!!!!!!!!!!!!!!!! IT'S TOO MUCH FOR ME. MY BODY ACHES SO BAD! MY BODY IS SOOOO TIRED!!!!!! I CAN'T DO IT ANYMORE. SOMEBODY HELP!!!

10-16-2005, 12:34 PM
I have read that stress is EXTEREMELY detrimental to your immune system, and since Lupus is all about the immune system... yeah...

Anyway, I know how you feel... Somedays I just wish I would succumb to it. Just go to sleep and not wake up. Just make it all stop.

10-16-2005, 12:51 PM
Solesinger, I see that you are young as well. I am 20 (will be turning 21 on 11/11). With you being young, how is lupus affecting your life? Do you work and go to school? Sometimes I feel as if I'm overexaggerating; I feel as if I'm being a wus because I'm only 20 years old. Me being so young, I shouldn't be lazy and complaining all the time.

How do you cope with everyday life having lupus at a young age?
People in their 20's are supposed to be full of life and ambition but I don't feel that AT ALL!!!!!!! :(

10-16-2005, 05:04 PM
Oh butterfly! I'm far from 20, but know that life is a precious thing. Talk to someone - your doc, your Employee Assistance Program through your work, a counselor, someone.

Also go to a website I always recomment - www.butyoudontlooksick.com - it has a link for a wonderful story written by a young woman about your age - who's in college. the "Spoon Theory" talks about getting through the day, about helping others understand what it is like.

Life can be a wonder at a slower pace, it can be so filled and so worthwhile. Vent here - let us hear all the frustrations. And when you're ready,also share the joys here.

Many hugs, dear, the dark days will pass.

10-16-2005, 06:37 PM
Solesinger, I see that you are young as well. I am 20 (will be turning 21 on 11/11). With you being young, how is lupus affecting your life? Do you work and go to school? Sometimes I feel as if I'm overexaggerating; I feel as if I'm being a wus because I'm only 20 years old. Me being so young, I shouldn't be lazy and complaining all the time.

How do you cope with everyday life having lupus at a young age?
People in their 20's are supposed to be full of life and ambition but I don't feel that AT ALL!!!!!!! :(

I know exactly how you feel!! I don't go to school, but I do work and am the singer in a band... It's hard... and getting harder.... I'm not sure I AM dealing with it very well at all... I SLEEP THROUGH my weekends... literally... Last Saturday, my band had a gig... I slept all day before it, and all day Sunday and all week I was STILL so exhausted and in so much pain... I've only recently (with the cold weather I think) started getting joint pain and it's kicking my butt... The fatigue is UNREAL... my muscles are always tired... I am always nauseous and I have seemingly constant headaches... I hate this thing because I feel like I am trapped in someone else's body...

I have always been VERY energetic (although I've always been heavy) When I couldn't dance around the stage last week it killed me... The fact that I am moving so slowly because I just have NO ENERGY isn't cool with me... I feel like I'm 150 years old.. Somedays I wonder if I AM dying... And frankly at this stage in my life, if I'm gonna go I want it to be MY choice not some stupid disease...

I hate this because I hate the person that I am being forced to become... I don't have the energy to practice in between band days, I can barely listen to the radio because my head is always THROBBING, I don't even sing in the car or the shower anymore...

My goal of making this my career is slowly dripping down the toilet because the schedule of singing full time, and all the energy you expend (You'd be surprised how much you REALLY give to an audience when your supply is limited) even just standing in one place singing for three hours, not even dancing around the stage, is starting to get harder and harder... And my band at this point ISN'T incredibly active...

The other thing that I hate is having to think of all the things I suddenly have to think about... In your 20's you're supposed to still be in the "I'm invincible and immortal NOTHING will hurt me" stage... I hate that I can't be there, too.... I hate that I have to think about how much energy it's going to take to drive across town to hang out with a friend... I hate that if someone sneezes around me I have to worry if I'm going to catch a cold...

I also wonder sometimes if I'm exaggerating... If I'm just watching TOO closely and all these symptoms that I'm having are really nothing... But, I have always been one of those types to just blow things off... And I'm afraid if I do that now, it could be fatal... So maybe I'm OVERLY cautious? But, i'm really trying not to be... I don't want to turn into a hypochonriac...

I hate that my bestfriend hugged me the other day and it literally HURT!! How can you tell someone "please don't hug me, because it hurts"? Especially when you KNOW that all they really want is to make all of this easier for you in some small way... and they really can't... It's hard, and I hate it and I'm sick of it...

And another thing is that I've never been one who was sick... I mean I'd get a cold every once in a while, but nothing major and it always went away fast... Now I feel sick or like I'm in pain or SOMETHING all the time... And that just puts me in a crappy mood all the time... It's amazing that ANYONE still talks to me...

Most of my stress is self inflicted I think... wanting to be able to do all the things I used to... To be the person I used to be... To prove I CAN do it all still... I CAN be super woman... But in reality... I know I can't... And I hate it. I hate feeling like the "damsel in distress". I LOVED that I could carry all the band's gear by myself up and down three flights of steps... This last time, I didn't even load any of the gear... And it made me SO MAD!!!

Wow... Have I babbled enough?

If you want to talk more, you can PM me! I'm not always the fastest to respond, as I try to kind of distance myself when I feel REALLY bad because I can be a real downer... But, I'd be interested to hear about how your lupus is affecting you... How long have you had Lupus? I've only been diagnosed for a few months...

Talk to you soon I hope!

10-16-2005, 11:03 PM
Stress is absolutely one of the number one triggers for Lupus (after sunlight). I worked for a maniac of a boss for several years and had a seemingly permanent butterfly rash across my face from the stress (not to mention the usual joint pain, fatigue, etc etc). My rheumy kept telling me "don't let things bother you so much," like I could turn off the stress like a switch. He didn't have to work for a maniac who blamed every single thing that ever went wrong on you. I stayed there as long as I did because of the health insurance and the $3 co-pay on prescriptions. Sort of like selling your soul, so to speak.

You have to decide what's best for you and your health. If you absolutely cannot take work and/or school, maybe it's time to take a break. Inquire about disability or social security benefits. Good luck!

10-17-2005, 04:06 PM
It's the old lady back again. I've been diagnosed with lupus for 3-4 years, and I remember that it was harder for me early on. Little by little I learned to (most of the time) manage my energy a bit better. Here's a few hints on how I did it, and how I usually maintain it. Trust me, I'm nowhere near as active and energetic as I was before, but I'm back to saying "OK!" when someone suggests a walk in the park to enjoy the fall leaves, or when I have to work a Benefits Fair - 6 hours of exchange with people, talking standing walking...looking energetic.

These are not in order, except for the first one, which helped me get it all together and KEEP it together.

* Talk to someone. Not just with us here, but to a counselor who canhelp yousort through the emotions and find YOUR triggers and what will save you. I still see a social worker fairly regularly to help me understand frustrations and deal with the changes in my life this condition has brought about.

* Listen to your body. I've set a fairly regular sleep schedule - make sure I get at minimum 7.5 hours/night. Now and again I still take a nap, but usually I don't need one.

* Drink enough water/non-cafinated and non-carbonated liquid

* Eat right - low fat, high vegetable, high fruit, try to only eat protiens that are low in saturated fats which increase inflamation.

* Consider adding supplements like turmeric (a spice!) and flax or flax seed oil, and fish oil. all help with lowering pain and inflamation.

* Exercise gently - I've been working out for years, now more gently. Some days I do light weights in addition to some aerobic (treadmill or eliptical) other days I barely manage the treadmill but I feel better after I've done it.

* If you're a spiritual person, seek out sites like Beliefnet that can give you a daily inspiration. Or seek out readings of people like Thich Nhat Hanh (The Miracle of Mindfulness). Or try Tai Chi or Yoga. Find your spirit and your soulfulness.

* and interact here - Oh this board and the other one I'm on have opened my eyes to how rich life can be, and how full, even when there are some physical limits to it.

OK, I"m getting off the soapbox. Please, take this in the spirit of caring that it is offered, not as a lecture or playing down how you're feeling. I've been where you are, I understand. I just hope that at least one of the hints here is one that will work for you and help you.

Many hugs, dears... many hugs!

10-19-2005, 03:44 PM
Thank you guys for all your support and advice. Hatlady that was alot of insightful advice and I will try to do that. I don't have any time to do anything. I am so DEPRESSED that it's like my soul isn't even here on earth anymore. I'm just going with the flow. I just don't want to be here anymore. I have so much pressure on me right now.

With school, I have to make good grades b/c last semester I did bad b/c of the lupus. SO i have to get good grades this semester or I will be put on academic probabation.

With work, I just received my 2nd written warning for not making quota. SO I will be fired if I don't make quota for the next 9 months.

Also with school, my family will look down on me for not finishing school. I just want a break. I just want everyone to leave me alone.

I hate being here. Everyone expects so much from me. TOOO MUCHHH PRESSUREEE!!!!!!!!!!!!!

10-19-2005, 04:20 PM
Oh sweety, I wish you were nearby so I could give you a hug - and tell you that this too shall pass.

Because I know it will. First, I don't know what your faith may be. I was raised Roman Catholic, though I do not follow that faith anymore. I'd like to share one little prayer that has never left me, and I know it never will!

St. Therese's Bookmark

Let nothing disturb thee
Nothing afright thee

All things are passing
God never changeth

Patient endurence
Attaineth to all things

Whom God possesseth
In nothing is wanting

Alone God sufficeth

Now, if I could hug you, I would. Since I can't, I can offer these suggestions:

* Talk to your school. If you are in college in the States, you will have a person, possibly in Student Services, Possibly in the Advisement Office, who will work with you on the Americans with disabilities Act - ADA. TELL them you have lupus and need some assistance. They'll work with you. Don't try to go it alone!

* Talk to your family. Share the spoon theory with them. Be honest with them, you need their support. They know you so well, I'm sure they are concerned, they love you and want your happiness.

* Are you in the States? If so, and if the reason you're not making quota at work is because of the lupus, talk to the Human Resource Department. Take some information on Lupus with you - a print out from WebMD and from the Spoon Theory for starters. They will probably ask for something from your doctor - to start what is called the "Interactive Process" under ADA. They may be able to help you meet your quota - by letting you have additional break time, or something. Tell them the Society for Human Resource Management (SHRM.org) can help them find more information. That you learned this from a Human Resource professional who has lupus. (That would be me).

* Go easy on yourself. I once openned a Dove Chocolate candy that had that message inside the foil. I kept it. Brilliant philosophy and chocolate, seemed the perfect combination! :wink: Sweety, you CAN take time for yourself. You need to. Realize that you are a wonderful person. AND that you need to be good to yourself.

I've rambled a long time. Butterfly, you are a wonderful person. You are a person with strengths and qualities that no one else on this earth can offer. I'm so glad you're here with us, on this board, and I know that those around you feel the same way.

Many hugs.

11-14-2005, 08:55 PM
Hi, I too have been under tremendous stress lately. I took a leave from work to take care of my mom who died after 9 weeks. I took care of her 24/7 she died a horrible painful death and the medication made her crazy. I had just sort of recovered from a flare. Since going back to work I have had to make up for all the time I missed. Stress is causing another flare up. I have terrible burning in my breasts/chest and back and my mind is cloudy and I feel vacant and not with it. I'm hoping I can get past this and feel better again. But stress and not sleeping is the worse thing for us. sss

11-15-2005, 10:55 AM
Butterfly, Solesinger and Spacey - hugs to all of you...

Spacey, you're in Oregon - if you have used 7 weeks of your FMLA leave, you still have 5 you can use. talk to your doc, ask him/her to recommend that you take a couple of weeks off. You need to recover, and that will take REST! the FMLA will protect your job.

Butterfly - please let us know if things are going any better. Have you talked to someone? We can provide "virtual shoulders" here - but I think you really need to talk to someone, a doctor, a counselor, someone to help you through this dark period. YOu've got a lot going for you - and even if it takes a semester or two longer, you WILL finish school. Do it on YOUR schedule - you don't have to follow anyone elses.

Solesinger - you are so strong! YOu are learning balance, and will manage and make it through. Believe in the beauty of your soul, dear, it has helped many on this board already. We believe in you!

12-03-2005, 12:19 PM
Thank you for all your support. I am going to take care of myself. I was under so much stress because my family expects so much from me. They expect me to finish school when I'm suppossed to. So I always felt guilty about taking time off. But you made a great point, hatlady, I can always go back to school.

I don't understand why people can put you down like that. Make you feel bad if you don't do things their way. WHY!!!!!???????

But thanks again hatlady for all your support. You are so sweet and we need more people in the world like you.

For my birthday I found out that I was pregnant, so I REALLY have to take care of myself and my baby.

Thanks hatlady!!!!

12-03-2005, 12:32 PM
:D Butterfly, congratulations on the pregnancy! And happy birthday too! :new-bday:

Do work closely with your doc and your rheumy, you need to take special care during this time. Keep us posted on how things are going for you.

Take even more care now to manage stress - you're watching your health for you and for the baby.

And thanks for your kind words as well -

gentle hugs~~

12-10-2005, 09:35 PM

I understand that you are going through a lot right now...I was diagnosed when I was 19!!!

I am now 28, and I believe in my heart that if you read your sig...you can get through this!!!

If you need anything I'm just an email away!!!

12-12-2005, 11:49 AM
Yes stress makes Lupus worse. I've been sooo stressed these past few months with no end in sight. And THEN I started losing my hair, which only started causing more stress, and weight gain, which caused more stress. It's become a neverending circle. I'm trying to get off my butt and straightedn thigs out, but it's so hard, and I'm not feeling very motivated.

I guess what I'm trying to say is that I understand, and "am right there with ya girl!"

Sometimes sleep feels like the only "break"!