the sun is NOT my friend!! new symptom...

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bella4
Regular Member


Date Joined Jun 2005
Total Posts : 263
   Posted 8/5/2010 2:11 AM (GMT -7)   
hello all :)
 
so....i have always had sunsensitivity but this is ridiculous and frankly, a little scary!!  what is happening is this...at times with just a little exposure like just the sun shining on my arms or legs while i'm driving, it will sting something fierce.  it literally feels like they are going to catch on fire if i don't get out of the sun immediately.  i have to stop the car and run into the shade because the burning and stinging is causing me so much pain that i can't drive....and this is only after a few minutes!!  this has happened 3 or 4 times in the past month.  no, sunscreen doesn't help.  yes, if my skin is covered completely then i'm okay but it is 100 degrees where i live.  normally, my skin isn't affected like this.  i have other problems related to sun exposure like weakness, nausea, fever, etc...but never anything like this.  it scares me.  i don't even know if it is lupus related.  anyone experience anything like this????  oh, and no redness or rash on my skin because there hasn't been enough time in the sun...
 
thank you!!
 
e
dx jan 06:
sle, fibromyalgia, neutropenia, chronic anemia, neuropathy, interstitial cystitis, raynaud's, migraines, seizures

Kalani L
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/8/2010 5:47 PM (GMT -7)   
I have the same, one second kills me.... its gotten worst over time causing fainting, loss of function & movement and much much more.
this is a new thing for me and most dont understand.
i think they think im kidding or lying probably.
Im going to school for dental assisting, I found my lab coat with a few layers under sorta does the trick.
I call it preparing for battle. lol
Gloves, extra layers of socks, sunglasses, scarves, hats, umbrellas.
You can even buy sun proof clothes. a little more $ then regular clothes tho.
it seems so stupid and honestly i hate it, i get made fun of alot. but i guess its better then the alternative.
Ive also put sunblock on my body & rubbed it into my clothes lightly so its not gross.. lol.
I think it kinda helps me. maybe if you have something that covers your arms you dont care much for you can try that.
Lately the suns become my enemy.
Not only the sun, most lights in general.
except fire! haha its become comforting and beautiful to me... its the only light i can be around and look at.
Some lights, like the one in my classroom doesnt even make me flinch, its weird.\
if anyone would like to talk more about this... email me.
I'd love to make a friend that sorta knows what this is like.
Good luck! stay safe :)

Ka1ani@yahoo.com

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/8/2010 7:41 PM (GMT -7)   
I actually feel a burn/tingle when exposed to sunlight. It is very uncomfortable and gets worse the longer I am exposed even with heavy duty sunscreen. I wish I knew why but no 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, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

moggy914
Regular Member


Date Joined Jan 2010
Total Posts : 64
   Posted 8/11/2010 10:56 AM (GMT -7)   
I have the same sun sensitivity. I do not have Lupus, I have fibro and RA. I don't know if it is related to the meds I am on or not. If I am in direct sunlight, it feels like my skin is burning even though it is not warm to the touch. Something that helped was putting a damp paper towel in the freeezer for a few minutes and then holding it on my skin. The coolness helped.
  This is a new symptom for me, I don't think I had this last year. I have  a big straw hat I wear and I bought a white long-sleeved zip-up hoodie to wear in the car. Even if I am in the car and the sun is shining on me it will start to hurt! It's been really hard this summer because my kids want to go to the pool a lot and I don't want to be out in the sun!
  I just found out about a type of sunscreen for sun-sensitive people called Anthelios or something. Have you ever heard of it?
Diagnoses: Depression/Anxiety, PTSD, Hypothyroidsim, High Blood Pressure, Fibromyalgia, Raynaud's, Rheumatoid Arthritis, Osteoarthritis, Sjogren's
 
Meds: Celexa (once a day), Buspar (2x a day), Levoxyl (once a day), Metoprolol (once a day), Lyrica (3x a day), Plaquenil (2 times day), Clonazepam to help me sleep for the moment until I find something else.
 
Allergic to: Sulfa, Ceftin, Augmentin, and Synthroid (probably the filler).

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/12/2010 7:49 AM (GMT -7)   
I can completely relate. I was recently diagnosed with Mixed Connective Tissue Disease; they think the Lupus is the worst part right now. Then my eye dr is also saying MS... MS.. everytime I turn around. The sun is horrible. I could never imagine how tired, weak and even faint it would make me, or how in just a few minutes, I could start hurting and feeling stiff all over, or make my vision go so blurry that I can't see 4 feet in front of me. Then theres the weird bumps that pop up on my face. Anyone have any suggestions, besides stay cool and out of the sun?

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 8/14/2010 11:11 PM (GMT -7)   
Yes, same here....skin tingles after just a few minutes. I break out in a weird rash if I don't get into the shade. Sunscreen doesn't help. Only covering up. I have two pairs of prescription glasses, dark (for indoors) and darker (for outdoors).

I always feel exhausted, drained, like I've been run over by a truck afterward....have to lie down and take a nap.
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com

angieohiogirl
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 8/15/2010 10:04 AM (GMT -7)   
Oh i can relate. I was sitting at my son's football game reciently, and the top of my head was on FIRE, i had to hurry and find the only shade tree in the area and stand under it. It was actually painfull! This has happned to me on a couple of diffrent occasions. I chalked it up to...my hair loss, and my scalp being exposed to the sun, or maybe a product I had used on my hair.
I am glad I read this post, as I am going to my Dr. with a diary of my symptoms and I had completely forgotten about this happnining.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/15/2010 10:58 AM (GMT -7)   
The sun is mean but I have also found that simply just the heat is terrible and if any of you life where it is very humid then you know how humidity can zap any energy you might have right out of you. Stay cool.

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 8/15/2010 4:52 PM (GMT -7)   
I have experianced the same problem, Sun sensitivity, I didnt know the humidity could make it worse too and right now we are haveing some very humid weather. oh-vay!
My next door neighbor told me she thought I was a vampire because I never come out during the day only at night, or when its cloudy. Plus I am up all night with insomnia. maybe I should go over to her house with fake fangs and knock on her window.
tee hee I know I could use a good laugh. and I am tryin to keep my sense of humor about it.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/16/2010 2:27 PM (GMT -7)   
Heres a vampire story for ya kay10,
I have capable teenagers, but with Autism, and they hate mowing. My hubby was out of town working for a month. Invetibly the grass still grows. I have been having such a hard time getting the kids to mow that I went to Lowe's and bought one of those headlamps (a flashlight that is on a head band) and was going to mow at 9:30 10 oclock at night. I laughed to myself and wondered what the neighbors would have thought. Then I was resued by my little brother. He and my sons did it all and I didn't have to. I am sure that everyone would have thought "loud mowing crazy vampire"! hahaaha!!

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 8/16/2010 4:39 PM (GMT -7)   
Oh! jdrea too funny I laughed my a-- off. For halloween if you pass out candy you should dress up as a vampire, keep your neighbors guessing. I went for a walk today and my skin was burning ( and I was covered) I told my dad and he said that maybe I should not take any chances and stay out of the sun because I might burst into flames. Lol! it sounds like you have a lot on your plate. I have a friend who as an Autistic boy, and I know how hard it is fo her.
I am glad to see you are keeping a sense of humor about it, sometimes we have to laugh at ourselfs or we will just cry.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/19/2010 12:04 PM (GMT -7)   
Amen kat.  I have decided through all of the this that it is better to laugh.  I found that if I cry then my eyes and nose swell and well.... it isn't worth it.  So I just laugh.  I only go outside to start my van and let it cool off about 15 minutes before I leave.  Then the longest time I'm out is to walk back and forth.  My 11 year old son, loves for me to take him on walks, we go about 8:30, just before dark.  It is the coolest time of the day and it is nearly dark.  I can't see but he talks enough that I can tell where he is and keep up.  As of late, our walks have gotten shorter because of my legs, but he is still over joyed to go.  So  kat, stay in the house, avoid the sun at all costs.  We are not the same kind of vampires as Edward.  We don't sparkle in the sunlight.  We blow up and melt into a pile of.... something.  Take care.

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 8/19/2010 4:18 PM (GMT -7)   
Hello Jdrea, LOL! I am going to have a t shirt made saying " The sun does not make me Sparkle it makes me Flare! Lupus Sucks!! Sorry to hear you are having problems with your legs. you take care also, my prayers are with you.
Kat

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/20/2010 6:20 AM (GMT -7)   
That's the perfect shirt. lol Thanks for your prayer and you are in mine as well.
jdrea

Lupusornot
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/26/2010 5:34 PM (GMT -7)   
New to board, new to Lupus
 
I am awaiting the diagnosis after May bloodwork showed 1:80 Speckled ANA and positive Smith Antibody
 
I have this same symptom!   I thought I was going crazy!   When it was really hot here, even if I had on long sleeves in the car
it would feel like my arms were on fire!

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 8/28/2010 10:59 PM (GMT -7)   
that was sooooooooooooooooo funny !!!!!!!!!!!!!!!!

I just sat here and laughed AND cried throughout this whole thread. I so relate to all of it. ALL OF IT.....the problem and EVERYTHING EVERYONE said.

Kat and jdrea thank you for the HUGE laughs. (thank you)

Beautiful Madness.

p.s. i am a newbie here................obviously. :)

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/2/2010 9:27 PM (GMT -7)   
I have really enjoyed reading all of your posts. I have huge issues with the sun due to my lupus, I really miss being outside. It's comforting to see that i'm not the only one. Thank you all for posting.

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/3/2010 8:43 AM (GMT -7)   
Hey everyone if any of you that have posted on this thread, it is absolutely beautiful at my house today. The sunis out but it is cool and even though it rained last night the wind is keeping the heat of the sun down and the humidity at bay. I am going for a walk (mostly in the shade) to take in the freash air. I will be thinking about all of you.

bella4
Regular Member


Date Joined Jun 2005
Total Posts : 263
   Posted 9/7/2010 3:09 AM (GMT -7)   
hi everyone!

thank you for all the comments...im sorry that i didnt get back to you all right away but i have been feeling crummy and when i feel crummy i disappear...anyway, you guys are funny and i love your version of 'twilight' ...i totally would mow the lawn at night!! hahaha...im a nightowl by nature anyway so this whole sun thing just doesnt work for me no matter what!! (((hugs))) to all of you who are affected by the negativity of the beautiful and wonderful sunlight...im sorry you are all feeling crummy too!!

bella
sle dx 2006

kimberlyrenee
Regular Member


Date Joined Aug 2009
Total Posts : 43
   Posted 9/15/2010 9:49 PM (GMT -7)   
kat10 said...
My next door neighbor told me she thought I was a vampire because I never come out during the day only at night, or when its cloudy. Plus I am up all night with insomnia. maybe I should go over to her house with fake fangs and knock on her window.


hahhaahhha! LOVE THIS. My friends call me a vampire, too. Keeping a sense of humor is crucial :]

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 9/17/2010 10:56 PM (GMT -7)   
You too KImberlyrenee? Lol! for the life of me I cannot figure out why they ref to Lupus as the wolf. Honestly If there ever was such a thing as Vampiers we would be it. Up all night with insomnia, we burn up in the sun and we are pale due to not being able to go out into the sun and/or being covered up all the time. And welcome sonyalee and ms. wonder this site is great. I am so glad I found people who can relate. Sometimes you just need to laugh at it or you will cry and God knows I have done a lot of that.

caring
Regular Member


Date Joined May 2007
Total Posts : 26
   Posted 9/20/2010 11:32 AM (GMT -7)   
I've had lupus for about thirty years now and have always taken precautions to avoid the sun as much as possible. When I'm going to be in the car when it is sunny, I always wear long sleeves and outdoors, always a hat and usually long capris or long pants. It's a bummer, but better than having awful flares. There are companies that sell sun protective clothing which is lightweight. I live in southwest Missouri where it gets very hot, very sunny and humid.
Fluorescent lights can be bad for both discoid and systemic lupus patients. And, sometimes when I've carried an umbrella - people will chuckle and say, "Think it's going to rain" ? But, there again, so what ! Hate to say it, but light in general seems to bother me now even more than when I was younger. I'm very picky about where I sit in a restaurant or coffee shop, as to avoid bright glare from the windows. All I can say is "Cover up when you can"!

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 9/20/2010 3:45 PM (GMT -7)   
Caring, I understand about the umbrella thing. I live in Michigan and we have had a very Hot summer, I like to walk alot but unfortunetly in my neighborhood you are in full sun when you do that, and I was out walking a couple of weeks ago when it was 95 and high humidity and I was completely covered up and wearing long sleves and I passed a couple walking and the first time they passed me they looked at me funny and the second time the women said" why are you wearing long sleves arent you hot" I just mumble yes and kept on walking, she looked at me like I was crazy. Its embaresing to say the least. I cant relate.

Kat10 :)
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