Does anyone else have these symptoms?
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.
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
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.
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
Originally Posted by giggle
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?!!!!"
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.
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!
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.
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.
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.
Originally Posted by giggle
I'm so sorry to hear about your troubles.