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giggle
04-23-2010, 11:41 PM
hi guys :cute:

Out of interest, I was wondering if anyone else experiences these odd symptoms...

* severe UV light reactions, especially during a flare. If I am having a flare and am exposed to artifical UV lights, especially theraputic grade UV lights the following happens.... 1. My head instantly starts to feel warm, i feel light headed. 2. my eyes feel full of pressure, if fully exposed to the light then the vision fades from all around the outer of my vision until its completely gone. if the light source is off to one side, my vision fades from that point. My eyes feel like they are rolling back. 3. my head feels even lighter and i begin to lose consciousness.

* confusion/inability to talk/memory loss. Sometimes, quite often actually, i cant talk properly. I know what I mean, but what I say is not what i meant. Or, I will be part way through a sentence and its gone without a trace. Or a simple word I mean to say, i cant say it.

* when i feel dizzy, which is often, i walk into things. I will slightly veer to one side and am unable to control it, even if i recognise I am going in that direction.

* muscle weakness. like they just dont work, as much as i may push them. my grip is loose, or i just cant hold even a small weight, like the breadboard. im normally a very strong person.

* like a zapping feeling in your head. like sparks. it often happens when i have a 'headache' where my spine and skull come together.

thats all i can remember at the moment, these are the main ones i dont find described anywhere for lupus... i would love to know if anyone has similar symptoms.

Ari

Nonna
04-24-2010, 04:17 AM
hi ari, me again, I got some sleep. I have similar symptoms. I could say all of the above except for your UV reaction. I've walked into thing all my life, muscle weakenss in my hands. I broke our electiric fry pan. As for headaches don't ask. I also have twitches that start where my skull and spsine join and end up in my hands and feet. You are not alone in what you are feeling. Read Marla's posts on the ssroygen conference. They have useful info nd read the stickies

Hugs,
Nonna

Millie
04-24-2010, 04:39 AM
Hello!

Confusion, memory loss, inability to express my thoughts in proper terms when talkin. Yep. And I didn't use to have these before. Very frustrating. And the dizziness. I too walk into things, sometimes I have walked into doorframes in public and yes, it IS veeery embarassing. I also have problems with being able to grip things, it's like there's simply no strength in my hands sometimes. This lates, however, comes and goes, sometimes it's worse, sometimes better.

Hugs and Strength.

tgal
04-24-2010, 09:37 AM
hi guys :cute:

Out of interest, I was wondering if anyone else experiences these odd symptoms...

* severe UV light reactions, especially during a flare. If I am having a flare and am exposed to artifical UV lights, especially theraputic grade UV lights the following happens.... 1. My head instantly starts to feel warm, i feel light headed. 2. my eyes feel full of pressure, if fully exposed to the light then the vision fades from all around the outer of my vision until its completely gone. if the light source is off to one side, my vision fades from that point. My eyes feel like they are rolling back. 3. my head feels even lighter and i begin to lose consciousness.

* confusion/inability to talk/memory loss. Sometimes, quite often actually, i cant talk properly. I know what I mean, but what I say is not what i meant. Or, I will be part way through a sentence and its gone without a trace. Or a simple word I mean to say, i cant say it.

* when i feel dizzy, which is often, i walk into things. I will slightly veer to one side and am unable to control it, even if i recognise I am going in that direction.

* muscle weakness. like they just dont work, as much as i may push them. my grip is loose, or i just cant hold even a small weight, like the breadboard. im normally a very strong person.

* like a zapping feeling in your head. like sparks. it often happens when i have a 'headache' where my spine and skull come together.

thats all i can remember at the moment, these are the main ones i dont find described anywhere for lupus... i would love to know if anyone has similar symptoms.

Ari

I have so many of these symptoms! The "zapping" feeling I get all over my body. My head and my legs especially. Confusion? Inability to to "find" the word you are looking for. Yep. I sometimes feel that my IQ has dropped by 100 points since the onset of this disease. Heck... I lost my car the other day. Not only did I lose it, I couldn't even remember what kind of car I had! *sighs* Don't worry. You are not alone

teresaa40
04-24-2010, 10:37 AM
Oh boy, can I relate. I don't have the extreme UV reactions either, although, I know there are Lupies that do. Confusion, yep, and I have always been a well spoken person, but, now, not so much. I have completely forgotten so many words that are basics, simple, always right there at the top of my head. They're so elusive now, I am almost afraid to start talking to people for fear I will end up sounding like a blithering idiot. It's worse when it's someone that doesn't know me, and end up thinking I'm kind of stupid. Or they give me the word Im searching for. I really don't want them to do that, but, I get why they do. They want to finish this conversation before their hair falls out.

Dizziness. Well, I don't get dizzy so much as I have lost a lot of my coordination. I stumble over things, whack my arms and legs on things, miss the ledge in the cupboard and send things flying across the counter.

Muscle weakness, it's transient. Some days its so bad I can't even lift my coffee cup, and other days I am able to wrench open a pickle jar. No rhyme or reason to it.

No zapping feeling now, but, have had it on occasion over the years.

I think the thing to really get out of our responses is that while we all have differences, we also all have similarities and are connected by the common thread of one question

"What the heck is going on?!!!!"

LAP717
04-24-2010, 01:49 PM
YES, YES, YES, YES to the UV reactions. My whole face feels "hot" or flush, I get almost waves of dizziness, my legs and arms get hot and sometimes feel like they won't function. Feverish, for a lack of a better description. And it can take hours to resolve itself.

I have just purchased some items from Coolibar to help protect myself, including UV protection clothing (sunglasses, light smocks, head cover). I wore the glasses and smock to the grocery today, and felt much better than normal when I left. Not perfect, but 50% better thank usual.

magistramarla
04-24-2010, 08:31 PM
Ari,
I have the muscle weakness and the dizziness. I was dx'd with Meniere's Syndrome a long time ago. It causes vertigo (dizziness), tinnitus (ringing in the ears) and hearing loss. My rheumy recently called it autoimmune inner ear disease.
The muscle weakness is something that all the docs like to ignore. I also have a sore, spastic knee that had knee surgery, so they always just blame the muscle weakness on that. When I complain about the other leg, they just say that I'm straining it because of my sore right leg. I beg to differ! There is a definite odd weakness in my thigh muscles that comes and goes. I also have that intermittent weakness in my hands that others have mentioned.
I'm lucky that I don't seem to have the UV problems, especially since I live very near the beach!
Hugs,
Marla

giggle
04-26-2010, 10:19 PM
Hi Guys... the worst thing is, here in Australia they are phasing out old light bulbs. Old light bulbs are now illegal.......... instead, we are expected to have energy saver UV/fluro lights. :(

This is a sad era for us lupus people.

Ari

giggle
04-26-2010, 10:58 PM
lap717.... feverish! thats a very good way to describe it also. I feel hot at first and then it feels like the blood is just draining out of me and im about to go limp and fall to the ground in a puddle. Infact, if I am cool and go from inside to a hot area with UV I get stomach cramps and feel ill.

Nonna
04-28-2010, 10:50 AM
Hi Guys... the worst thing is, here in Australia they are phasing out old light bulbs. Old light bulbs are now illegal.......... instead, we are expected to have energy saver UV/fluro lights. :(

This is a sad era for us lupus people.

Ari

If it were me I'd go to the old hurrican lamps with lamp oil. that is so outrageous. I can't see with those special energy saver UV/fluro lights. The light they shed is not right to my eyes.

I'm so sorry to hear about your troubles.

Nonna

LAP717
04-29-2010, 04:44 PM
Giggle... sound like we could be Lupus twins!

Sarah2010
05-02-2010, 07:43 AM
Hi. I have allmost those same uv reactions!!! I live in Florida and I love the beach. BUT....it virtually kills me to be out there. It feels like the sun penetrates my head through my hat..It causes a pressure sensation in my head. I feel sooooooo hot, just on my head and neck...I'm super dizzy the whole time these symptoms are happening. I get so hot on my head, around my ears, that I want to shave my head instantly!! The only thing that helps is going back in to the conditioned air...I hate it!! other than the joint pain, the heat sensitivity is my WORST symptom..i feel like im gonna pass out from it, I HATE IT!!! lol...I hope this helps..

Bench
02-06-2011, 11:19 PM
hi guys :cute:

Out of interest, I was wondering if anyone else experiences these odd symptoms...

* severe UV light reactions, especially during a flare. If I am having a flare and am exposed to artifical UV lights, especially theraputic grade UV lights the following happens.... 1. My head instantly starts to feel warm, i feel light headed. 2. my eyes feel full of pressure, if fully exposed to the light then the vision fades from all around the outer of my vision until its completely gone. if the light source is off to one side, my vision fades from that point. My eyes feel like they are rolling back. 3. my head feels even lighter and i begin to lose consciousness.

* confusion/inability to talk/memory loss. Sometimes, quite often actually, i cant talk properly. I know what I mean, but what I say is not what i meant. Or, I will be part way through a sentence and its gone without a trace. Or a simple word I mean to say, i cant say it.

* when i feel dizzy, which is often, i walk into things. I will slightly veer to one side and am unable to control it, even if i recognise I am going in that direction.

* muscle weakness. like they just dont work, as much as i may push them. my grip is loose, or i just cant hold even a small weight, like the breadboard. im normally a very strong person.

* like a zapping feeling in your head. like sparks. it often happens when i have a 'headache' where my spine and skull come together.

thats all i can remember at the moment, these are the main ones i dont find described anywhere for lupus... i would love to know if anyone has similar symptoms.

Ari

Oh my goodness!!!! Yesssssssss... I just posted on another thread asking if anyone else got that kind of reaction to UV lights. I was at a trade show and I immediately started getting SUPER hot like feverish hot and I knew a fainting spell was coming on because my vision got all funny.. this also happened in the morning when I went to Walmart- how strange. I haven't been diagnosed yet, but my doctor is adamant this is Lupus because of all my symptoms.
I've had the dizziness for such a long time now I almost find it amusing! I'm just like you and I have fallen off chairs, walked into doors..you name it I've probably done it (in public too)
Ive just recently noticed some muscle weakness as I am a very active person and I'm finding it more difficult to perform the exercises I used to daily.
confusion is my middle name.. I have said for years now I just feel so stupid. The other night I left my house keys in the front door... OVERNIGHT! I've never done that, I don't know how I managed to leave them in the front door, I really dont.
Anyway, it seems like many of us are on this same crazy train!!

jmail
02-08-2011, 08:15 PM
I forgot to wear my hat to work today (full of flourescent lighting), and now my face looks like my driver's license picture - YIKES!!! Lobster with boils on it! I have to wear long sleeves there, else my arms break out. The bad thing about those new bulbs, is that if you break one, you've got a hazmat situation with the mercury leak!

Ever get your shoulders all the way through a doorway, walking normally, only to kick the door post with your trailing foot? Down you go! How's that happen? I bring the term "klutz" to new highs (or is that "lows", since I'm on the floor so often?)

I can't remember the rest, and I can't type it anyway... So "ditto" to all of the rest of the above.

tgal
02-08-2011, 09:19 PM
Please everyone remember that having UV reactions often happens inside as well as out. Wear protective clothing and cover your computer screen in a UV protecting scree (yes, the puter puts out UV rays as well).

There is actually a "sticky" about photo sensitivity. It affects so many of us. I have to cover up in a 50 sunscreen all over my body, a special sunscreen for my face (and I can't really wear make-up because I have to keep re-applying it), long sleeves and usually a hat simply to go to the grocery store or a doctors appointment. When friends go with me they get so surprised that within 10 min I begin to turn bright red and start itching, after that I just feel burned and my whole body starts feeling like I was in a fight!

nanatricia
02-11-2011, 08:37 PM
I also have all those prob.I react a little dif to uv .I get real red nerves some time itchy sick to my t.Feel like I am going to pass out but the kicker is I do not get so much in the sun Just the uv light .I never for get the first time I went in to a walmart how I felt I thought there was something in the air con..That was before I knew I had lupus. I have a uv light in my studio and I have spec. tubing on them and then I covered them in heavy duty plastic it has help a lot .I do not have those feelings .