View Full Version : I was diagnosed with SLE and Fibro. in March of 2012

04-29-2013, 12:36 PM
I am 31 years old and i have had symptoms off and on for years. I suffered from seizures when I was younger and lost some of my hair. The docters didnt test for lupus beacause they felt that i was too young. I went through two very rough pregnancies undiagnosed which would regularly land me in the hopital due to different medical difficulties. However by the grace of God my son daughter made it here healthy and happy :) they are now ages 9 and 8. Things seemed to slow after that. I lost weight and got into shape, I went back to dancing and everything seemed to be fine. However, I started to get migranes more and more often to the point where not a week would go by without me having one and they would last for days until it would be, just one long migraine with a break of a day or two in between. My family took a trip to the beach and O.M.G. guys..........i had been sitting in the sun for about an hour and i couldnt take it anymore. I felt like i was going to die if i did not get off the beach right away. I felt weak and shaky and nauseaus and i felt like i had the flu it was awful. This feeling continued for the next couple of days and then gradually the nausea went away. I could get up and walk around , but i was still very weak. It took me a little while to build my strencth back up. I avouided the rest of the summer "heat" and threw off the hat in the fall when it was nice and cool. WRONG! all that time i thought it was the "heat". At this time im starting to suspect the sun. Iknew my aunt has Lupus so i start to research. Someone advised that i keep a symptom journal, so i did bc for the life of me i coudlnt remember anything when i got to my doctors appointments (which was another symptom.) So i kept the journal and brought it to my primamry and she took the proper blood test which came back suspicious. She then sent me to my Rheum. which confirmed that i had lupus and fibro which i hadnt heard of at the time. I am so relieved to finally put a name to the bucket of "symptoms" i had been carrying around for years.

05-01-2013, 01:44 PM
Hi princesspink, and welcome to WHL forum. Glad you're here, sorry you have what you have. The sun and even fluorescent lights get me every time now. I have to wear sun screen (maybe I'll say "I should wear"...) all the time, else I go into some bad symptoms. I also suffer from migraines, and some weird symptoms from the migraines oh boy. What meds are you on, and how are they doing for you?

05-01-2013, 02:15 PM
Thanks for the warm welcome :) so far I am on Pamelor 75mg . That takes the edge off of the migraines for me and when i get them they dont last anywhere near as long as they used to. I went to see my rheum. yesterday and she just told me the same thing you just said "to wear the sun screen even indoors" bc i've noticed that even indirect sunlight will cause me to become sick. What strange symptoms are you having with your migraines? I have experienced nausea and sensetivity to light and noise. I also have another question have you ever experienced tingling in your lips or toes or fingers as theyve fallen asleep?

05-04-2013, 09:34 PM
Are they treating the lupus?

I get the "usual" symptoms with a migraine, with light & sound sensitivity, nausea, dizzy, etc. It also interferes with the facial nerves (which I can't recall the name of the condition now...) to where my eyes feel like they're being pushed shut, and sometimes practically the whole face goes numb, mostly on the right side. I have at times done a whole right-side kind of numbness with it, which is disconcerting. The neuro guy says it's like a migraine-induced Horton's Syndfrome. I'll get that going into a migraine, like an aura, but usually with minimal visual disturbance. I do not tolerate most "triptan" migraine meds (tho they def do a number on the migraine), but have done the nsaid-type stuff, and have like one that's a powder that's mixed in like 4 oz of water. Very bitter, and I cannot get the name to come to mind. Gotta get the script refilled... I'm coming out of a migraine right now, and at 7 hours, is one of the shorter ones I've had lately. As my lupus flares, the migraines increase. Sort of a hand-in-hand thang... For lupus, I take plaquenil, and we're trying to get me back down to 5mg a day of prednisone, but I'm still stuck at 15. I'm also on daily thryoid meds, along with other various asthma, diabetes & blood pressure meds (I'm a decrepit old man before my time... tic).

05-06-2013, 03:18 PM
and the brain fog strikes again...

... The neuro guy says it's like a migraine-induced Horton's Syndfrome...

... that should be "Horner's Syndrome"... which it isn't a "true" Horner's Syndrome, but similar symptoms caused by the migraines...

I need more than a spell checker anymore... |;^)