I'm Sapph in WI and I was diagnosed with Lupus a little over a month ago. I'd gone in because of severe finger joint pain and knuckle bruising, and never in a million years would have figured it was anything like Lupus I'd be diagnosed with.
After doing alot of reading up, I can't believe how many of these symptoms I've been dealing with for years now.
I'm 28 now, and can remember feeling badly since I was about 15.
I've always had lots of trouble with fatigue, headache, nose and mouth sores, sun sensitivity, ear infections, dry eyes and mouth, bruising, sinus troubles, eye irritation, weight gain/loss for no apparent reason, poor appetite, red swollen nail beds, aches and pains...I was diagnosed as having Hashimoto's when I was 14, and had been taking medication for that up until this last year when I got fed up and decided to stop taking it. My TSH levels were never normal, and would go up and down no matter what dose of medication I was on or how faithfully I'd take it. I never felt any better, and I hated going in for blood tests every three months only to have my meds adjusted AGAIN to no avail.
I haven't taken any rx thyroid medicine in half a year, and don't feel any different at all.
I DO take a vitamin every day, and have been a vegetarian for 8 years. I also never smoked, don't drink, and purely by coincidence am basically nocturnal, so I don't have too much problem with the sun.
(although when I do go out in it, I definitely suffer for it later)
I think those things have been a help in my Lupus not being any worse than it is.
Anyway, this last year the fatigue has just gotten steadily worse.
My tonsils have been bothering me, and they are almost daily producing white, foul smelling balls that I either cough out, have to pick out with a swab or swallow, which can't be good for me.
I believe I have cryptic tonsillitis, and that those balls are tonsil stones, but I can't get anyone to do anything about it.
I went to an ENT and he was kind of a snot face about the whole thing...he insisted that I have acid reflux which causes a sensation of something being stuck in your throat.
I was like, I don't have a sensation, I have things stuck in my throat. If you wait around for awhile I can probably produce one for you.
He refused to even consider removing the tonsils and gave me a month supply of nexium, telling me I'd feel like "a new woman" in a month, which I did not. I felt totally ignored and dismissed out of hand...there isn't any other ENT in the area, so for now I guess I'm just stuck with the problem.
After that, I had the joint paint and the knuckle bruising start up, which is what made my GP wonder about Lupus.
I had a complete blood work up, and then she did several more tests before telling me it's definitely Lupus, but that it's mild and I have no organ involvement at this time. She told me to take Ibuprofen daily and to come in every 3 months for some organ function testing.
So now I'm just trying to deal with it as best I can.
I knew I was allergic to dairy, but my GP suggested I try to avoid gluten as well, which has helped a good bit, but I still feel crappy almost all the time.
I don't have as much support as I'd like...my mom tries to be supportive, but she's still sort of coming from a place where she feels ripped off that I'm sick, and is disbelieving some of the things I have told her, like about how I should keep out of the sun.
She tends to think I'm exaggerating, or using it as an excuse to not do things.
She doesn't want to believe it could be serious, I don't think, especially since her aunt died from Lupus related problems.
Now, I'm experiencing some new problems, like some weird little rashy spots on my left ankle, and something wrong with my palms and soles of my feet. That's happened to me twice...the first time it lasted over a month and I didn't know it was Lupus related, I just thought it was a rash of some sort...it was supremely red, swollen, itchy yet painful, tingly, and horrible.
I ended up trying all kinds of OTC meds for it, before finally giving in and scratching the crap out of it, which caused both palms to blister and peel.
This last time, knowing about the Lupus, I just did my best to keep it moisturized, not scratch at it, run cold water on it when it got unbearable, and not go out in the sun.
(that coupled with stress seems to be the trigger)
This last bout only lasted a week, no peeling or blisters, thank goodness.
It's almost like having a fever in my hands...they get extremely hot and red, and they feel better if I can get the heat out.
There is also pain, tingling, the sensation of something crawling under the skin, and severe tenderness, like it hurts to turn a doorknob, tenderness.
My GP said it's inflamed blood vessels and also neurological and suggested I try hydrocortisone cream, but that doesn't help at all.
Aveeno cooling lotion with menthol helped better than anything, but still, the main thing seems to be keeping it cool temp-wise, and being very gentle with my hands and feet, and no sun.
Anyway...I guess that's everything...sorry it's so long.
I didn't think I would want or need to join a support group, but with the new symptoms and nobody to really talk to about it, I feel like maybe it's a good idea now.
I'm hoping maybe you guys can give me some suggestions, advice, and a place to vent about things when I feel bummed and cranky.
Thanks for reading all this!
Ita erat quando hic adveni