New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Double T
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 3/26/2008 8:44 AM (GMT -7)   
Ok I'm still trying to just gather info about this disease, and much of it has my head spinning.  But I had a few q's?
A lot have told me to stay out of the sun, does lupus make you more prone to burning? I'm fair skinned and burn easily anyways but just wondered.
 
And is feeling literally like you haven't slept in days a symptom? I'm just about over this pnumonia stuff, but I get SOO tired now, like i haven't slept when in fact that's all I have done. LOL

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/26/2008 8:57 AM (GMT -7)   

The sun's rays start causing cellular damage almost immediately- for most people this is not a problem because their body can easily handle the small amount of damage normal sun exposure causes. Unfortunately, in many lupus patients this damage causes the over active immune system to become even more active. Thus many will feel ill and/or have a flare if they spend time in the sun. I have extremely fair skin and have always- I do mean ALWAYS because this was a problem for me even as an infant- had odd reactions to the sun. I get headaches, nauseated, start sweating even if I am cold, have chills, and a few other problems within 5 minutes of being in the sun with heavy duty sunscreen. If I am out longer it becomes much worse. 5 minutes is enough to bring out the malar/butterfly rash for me. I burn very quickly too. Within 10 minutes my skin begins to burn (I use 50SPF sunscreen or higher if I know I will have any sun exposure otherwise it would be even worse). I am one of the unlucky ones in that for me the sun sensitivity is so horrid. Sun sensitivity can come in varying degrees of severity. My rheumy says that mine is one of the worst she has ever seen. My husband and I joke about my needing to live on Vampire central time. The only time I go outside in daylight is when there is something that I have to do which cannot be done after the sun goes down. All of our windows are covered 100% of the time and when we buy a car we make sure the windows have a special anti-uv film on them to help protect me while I am stuck in the car.

As for feeling like you haven't slept in days, yeah that is part of lupus especially after an illness or during a flare.

I hope that this helps, I am sure others will respond as well. I have a suggestion, try and get ahold of THE LUPUS BOOK by Dr Wallace and visit www.butyoudontlooksick.com they are both wonderful resources and the website has something called the spoon theory that can help explain how lupus affects your life to others who may not otherwise have a clue.


Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/26/2008 8:57 AM (GMT -7)   
(((( Double T ))))) we all understand how overwhelming this disease can be and it's even harder to wrap your head around lupus and what it can do to your body.

For some of us the sun is not good, it causes rashes, fatigue, headache, etc and can throw one into a flare, it's called photo sensitivity.

Extreme fatigue is most defiantly something we have all dealt with. That is the one symptom that I struggled with the most, it can be very debilitating. Have you checked out www.lupus.org ? Be sure to mention your extreme fatigue to your doctor at your next visit. Take care and keep us posted on how you are doing.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/26/2008 10:56 AM (GMT -7)   
Hi Double T,
    Redrose and Stacie had great advice for you. I agree with what they said. For me, years before I was dx'd I didn't realize the symptoms I was having were from sun exposure. I was a sun lover and had to get that dark tan every summer. Not knowing at the time, each time I laid out in the sun or went to the lake or beach I would start getting flu-like symptoms within hours. I didn't burn easy and would tan pretty good but, the more I was in the sun I would get sicker and the rashes would pop up. Every time I went to the doctor they would say I have the flu, a bug or I'm allergic to the sun. Of course I was stubborn and hard-headed and refused to stay out of the sun. Each year my symptoms would get worse and worse until a dermatologist figured out I had lupus.
    I still struggle with staying out of the sun. This has been the hardest thing for me to give up. Although, I know the sun is bad for me I still want to be in it with everyone else and get a tan again....... scool .
   Please take care and be careful in the sun. Keep us updated. You are in my thoughts and prayers.
                                                                Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Double T
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 3/27/2008 10:24 AM (GMT -7)   
Thanks guys for the help! I sure didn't know that about the sun, and am gonna HAVE to find a workaroudn for that. I'm more of an outdoorsy person than an indoorsy one, I'll go insane if I can go out and do stuff outside! I've always been fair skinned and had to use at least spf45 sunblock just cause I burn so easy. But reading on the rashes thing, you know I've always gotten odd red spots on my legs my whole life when I'm out in shorts, don't get 'em anywhere else though.

Today's a better day so far, I at least feel rested, so I guess that's good.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 3/27/2008 4:08 PM (GMT -7)   
Many with lupus have sun sensitivity ranging from mild to severe but not everyone has that side effect.  In my case there is no difference and I have been able to go out just as I did before getting sick.  I put sun bloc on just in case.
 
The description from those who have sun sensitivity say that it is very obvious and some have an almost instant reaction to the sun.  I went to a baseball game 2 years ago to test the theory and found that I was OK.  Lots of other problems but not the sun.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 3/30/2008 9:21 AM (GMT -7)   

Hi!

I am so grateful to the person who wrote The Spoon Theory. I read it to my high school students every year, and introduce "my" lupus when we talk about people with disabilitities. I love the tshirts on the "butyoudon'tlooksick" website. My youngest daughter had a mantra of criticism directed to my then as yet not diagnosed symptoms: (said with a snarl) If you'd just get out and get some exercise, everybody gets tired, you don't look sick, etc" and she really did look ashamed when I bought a tshirt that quoted her comments almost exactly. And both my daughters shared some regrets as they "don't understand why they were so mean" and not as supportive as they should have been. And I do understand it is a teenage girl dynamic kind of a thing. Again, my thanks for The Spoon Theory. And mom46, I, too, regret not being able to be in the sun. For years as a teenager, I got 'sun poisoning' until I got a deep tan. Now, even light exposure gives me such an unpleasant itching tingling rash and malaise, I can hardly stand it. Sun block gives me a local allergic reaction, too, so I wear long sleeves and pants, a hat, and stay under a sheet or blanket sitting in the shade whenever I go outside. I miss the sun the most, I think. I had pneumonia in Jan. and again for the past 3 weeks, and now I am battling a flare of exhaustion, joint pain, and such systemic muscle weakness I could cry if I had the energy. Someone posted a comment 'ants in my pants' and I went WOW, what a good way to describe my feeling so anxious like ants crawling under my skin. My legs burn and tingle worse than my arms, and nighttime is the worst, as I literally weaken as the day goes by.

hugs to you all

sue


God knows, even if I don't....
CNS Lupus 2005, APS
Meds: Plaquenil, Neurontin, Thyroid, Voltaren, Aspirin, Atenolol and Norvasc, Prednisone prn.

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 12:14 AM (GMT -7)
There are a total of 2,735,771 posts in 301,331 threads.
View Active Threads


Who's Online
This forum has 151433 registered members. Please welcome our newest member, teenujohn.
255 Guest(s), 7 Registered Member(s) are currently online.  Details
Georgia Hunter, msOuchie, Job_the_Phoenix, Charmed3, gilly2, celebrate life, julymorning


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer