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j.tiredoflupus
New Member


Date Joined Apr 2015
Total Posts : 5
   Posted 4/29/2015 6:13 PM (GMT -6)   
Hey, I'm Jeanine, 20 y/o and I was diagnosed my senior year in high school when I was 18. I lost a good amount of hair when my doctor finally started paying attention. He did the panel and it was lupus.They said it was CLE but the rude doctor said it was a matter of when not if that I would progress to SLE and he put me on plaquinil. He promptly then left lol. I waited for about a year to see another doctor because no insurance company would accept me. I had to get on the SHIP which is awesome. I get tired very easily, and sometimes a bit depressed (but that may be due to my age and stress levels in college), and I know when I'm stressed because I get these terrible back pains on the muscles closest to the spine. I don't think anyone takes me seriously as a patient. I can sleep a lot (if you let me, I could sleep for upwards of 20hrs) but still wake up like I got a 20min nap and be exhausted 3-4hrs later. I am getting to the point where I don't know what to do. My mom tries to be supportive but then wants to take me on vacation to some of the sunniest places. Then gets mad when I don't want to go. I explain it to people but they don't understand. I drink a lot of coffee on a daily basis just to stay conscious. And as if my memory wasn't bad to begin with, it has just become foggier. I am in college, hard-working and dedicated but sometimes I just don't know what to do. If anyone could offer advice or just hear me out. I feel like I'm going crazy with this and it's driving me, not me driving it.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/29/2015 10:38 PM (GMT -6)   
Welcome to HW.
Sorry you're having to deal with this on top of doing College.

One thing we have all learned about this disease is that stress makes us flare. Try to find time to rest and de-stress. I like to listen to relaxation videos.

It took awhile for my family to adjust to my sun sensitivity too. Are you wearing protective clothing? UV rays sap my energy.

I can sleep 10-12 hours straight. I was extra tired from running errands yesterday and slept 12 1/2 hours.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

j.tiredoflupus
New Member


Date Joined Apr 2015
Total Posts : 5
   Posted 4/29/2015 10:47 PM (GMT -6)   
Yeah I just went and bought some clothes that are spf 30+ for the summer. I'm just wondering what everyone does to cope with the amount of sleep they get. Doesn't 10+ hrs disrupt work or school? And I know this is wired but I get hives on the underneath sod my forearms during emotional stress. I have a rhumie who doesn't really think my stuff is serious either is a big problem too. I just wanted to dip my foot in the water and talk to other lupus people 😁

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/30/2015 5:08 AM (GMT 0)   
Are you being treated?

Plaquenil?
Prednisone?
Cellcept, Imuran, MTX?
Benylsta, IGiv?

I used to sleep all the time but that got better once my Lupus was under control and I also was given Trazodone as a sleep aid so that I got deep, restorative sleep at night.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

j.tiredoflupus
New Member


Date Joined Apr 2015
Total Posts : 5
   Posted 4/30/2015 12:48 PM (GMT -6)   
yeah I was on plaquinil till last thanksgiving, I'm still on a ton of vitamins. I think I was a light sleeper to begin with but now it's not good sleep at all.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/30/2015 1:13 PM (GMT -6)   
I'm on disability for all of my issues. I couldn't work anymore.

Why did the doctor take you off of plaquinel?
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1404
   Posted 6/15/2015 3:09 AM (GMT -6)   
My future daughter-in-law has Lupus, and Diabetes, plus her stomach is swollen. She has been in the hospital 4 out of the last 6 weeks. My son is discouraged but is staying by her side. It seems she has mood swings and he's not sure how to handle her because he doesn't want her to get stressed out. They are living together. Any suggestions for him? Thank you.

cilly
Veteran Member


Date Joined Aug 2014
Total Posts : 1491
   Posted 6/24/2015 1:04 AM (GMT -6)   
Aimzee,
I can understand your pain,your DIL might be suffering my depression as most chronic illnesses cause myriad range of symptoms,be kind and patient and get her examined anyways.
It might help and please support him in this painful journey.

Good luck.
Hugs ,Take care
Cilly~
MDD,Anxiety Disorder,Panic Disorder,Lupus,Fibromyalgia and so much .......
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