Question for the experts

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

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 146
   Posted 2/19/2016 9:53 AM (GMT -6)   
Hope all is well with everyone. I do not post often but do read all the time. This forum is amazing. Brief history, I had a positive ana with major joint and muscle pains back in April 2015. Did some predisnose and had major relief so rheumy put me on palanquin. It has helped but I still experience burning pain every day. All other blood tests have come back negative. Every time I see the rheumy, he marks off different codes - like lupus, positive ana, fibro.
The past couple of weeks, I have noticed that I have been getting very light headed and feel like I may pass out in stores like Target. I have always gotten sick in the extreme heat but never in a store. Along with that, my cheeks burn for days after it. They are very slightly red - not a rash just red but hurt and burn. Then I feel dizzy and light headed for a few days. Has anyone experienced this before? Is this a symptom I should report to the rheumy or to my internist?

Thank you all for reading this and taking the time out to help and support me.
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 2/19/2016 11:20 AM (GMT -6)   
Ah, yes - photosensitivity!

You are probably being affected by the fluorescent lights in these stores -- a very common element in the symptom mix that is Lupus. I don't know that any meds ever really help with this, but many have resorted to sunglasses, hats with brims, long sleeved shirts designed to keep the sun off, keeping visits to such stores brief and to-the-point, no browsing! I used to have big problems in this area, but if you can get the other symptoms (burning pain) under control, this is likely to go away as well.

Glad you are joining us, let us know what's up!

Yes, all symptoms should always be reported to both rheumy and internist. It may be that you need something more than Plaquenil (note it takes 2-5 months to fully take effect). The next "tier" of meds is Imuran/Cellcept/MTX -- it's not known which of these will help which of us, so it's trial & error. Imuran did nothing for me, Cellcept was my savior. Everyone reacts differently.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 2/19/2016 12:59 PM (GMT -6)   
I would agree with Lynnwood, fluorescent lights will make you feel as bad if not worse than sunlight. My son is a school teacher and recently had to have our Rheumy to write a letter to the school district to have filters put on the lights in his room because of the effects the fluroescents. He was coming home sick everyday with a headache, nauseous, exhausted, rashes, etc.

Ryan and I both wear sunscreen everywhere we go. There is also a product that Rite makes that you can wash your clothes in that helps provide sunscreen to your clothing. There are a lot of things you can do like Lynnwood suggested so you can function fairly normal.

Hugs,
Melissa


Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/20/2016 12:25 AM (GMT -6)   
I'm very photosensitive so I buy special clothing with built in sun protection. I like the clothing by coolibar.com. I don't go anywhere without my hat and sunglasses either.

I have to make my trips to the stores quick and to the point. Walmart nearly kills me with its lights and skylights. I have to ride a scooter in there to have enough strength to get my shopping done.
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! :))

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 146
   Posted 2/23/2016 12:25 PM (GMT -6)   
Thanks everyone. I am trying to limit my time in stores. However, the feeling happened again at my church last night. I don't think they have florescent lights. I was fine in the lobby but in the actually church I felt faint, light headed, nauseous and oddly enough my cheeks felt like they were burning. They actually still hurt today. Could this be all in my head?
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/23/2016 10:01 PM (GMT -6)   
They might have CF bulbs in there or halogen bulbs. Halogen bulbs are terrible for me. I nearly pass out around them.
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! :))

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 146
   Posted 2/24/2016 11:15 AM (GMT -6)   
Thanks Joy. I was beginning to think that I was going crazy. My broker was wondering why I was working in the dark - I am afraid to be around light!!!
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 9:54 AM (GMT -6)
There are a total of 3,006,421 posts in 329,335 threads.
View Active Threads


Who's Online
This forum has 161833 registered members. Please welcome our newest member, LorrieL..
273 Guest(s), 13 Registered Member(s) are currently online.  Details
swimmer2, hopenchange, LorrieL., sebreg, 1000Daisies, Uniform Charlie, Tom1, dbell, FLBeachgal, kcragman, LifeisTrash, dsrouillard, iPoop