Sun and heat problem

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New Member

Date Joined Aug 2010
Total Posts : 2
   Posted 8/26/2010 7:48 PM (GMT -6)   
I am new to the forum.  I possibly have Lupus.  Have positive ANa 1:80 speckled and homogenous   and positive Smith antibody.  Been sick for years but they said it was fibromyalgia
Had surgery in April which sent my body into a tailspin
Now when I am in the sun or heat, my arms and legs with burn like crazy!   Feels like someone is holding a match to them.  I try to avoid the sun, but how can you when you are driving?
Is this a true Lupus symptom?   I have muscle and joint pain, extreme fatigue, constant headaches

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 8/26/2010 8:35 PM (GMT -6)   
How to avoid sun while driving -

- Have your car windows tinted as dark as the law in your area allows.
- Put on sunscreen arms, face, anything exposed.
- Use cover-ups, like long sleeves, hats, so forth. (I have a towel in the car I toss over my left arm as needed.)
- Get treated clothing ($$$)
- Get special detergent & treat clothing yourself.
- Wear VU protection sunglasses
- (Make someone else drive and crouch in the back seat under something like a vampire.)

Yes, it is a true lupus symptom. "Normal" sunburn is inflammation from sun irritating the skin. Lupus is, in short, a overactive inflammatory reaction. Add the 2 together equals these kinds of symptoms.

Of course, some of the lupus medications make us more sun sensitivity, so we can be adding even more sensitivity on top of it all.

Thankfully this falls more in the range of "annoyance" than something like kidney involvement.

Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 8/27/2010 5:43 AM (GMT -6)   
Hey there! Just wanted to welcome you to the forum! This is a great place and you can ask any question and get pretty guarentee several responses. I don't have anything to add to what Lynnwood said but wanted to say hi!
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

Regular Member

Date Joined Oct 2008
Total Posts : 261
   Posted 8/27/2010 12:00 PM (GMT -6)   
Hi there. Just wanted you to know I can def relate. They consider what I have "UTCD" although it resembles lupus itself. Not sure why they say I dont have enough criteria when I do but anyway, I too suffer from severe photosensitivity. I cant be around sun, fluorescent lighting or even computer lighting seems to do it and the heat just exacerbates it that much more. It also affects my brain and I cant function right in it. Ive also gotten rashes just by being near windows that reflect the light inside. It really sucks but theres not much you can do other than follow the steps Lynnwood mentioned previously. My skin is so sensitive I also cannot use regular SPF. It has to be organic in nature and even the highest SPF does not work for me. I believe I have a sensitivity to the chemicals in regular SPF because my skin actually burns worse & yes it does feel like fire. I also get neuropathy type burning as well so sometimes if you have both going on at the same time its hard to tell where the burning is coming from. I do hope you get answers soon as far as a diagnosis. I have only ever had a positive ANA 1/160 speckled & elevated CPK levels repeatedly. Just wanted you to know you are not alone :) *hugs* -Lupie Britt

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 8/29/2010 8:18 AM (GMT -6)   
Hi! and Welcome, too,
Lynnwood is spot on, I always have a light long sleeved something with me, the prickles from even sun exposure through my lightly tinted car windows are often enough to "drive" me crazy..
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