I have been thinking back over the last few years trying to see if I can think of a time when my symptoms started getting worse.
About 4 years ago I was pulling weeds in my yard. It was hot and sunny. Like 90 degrees. It was too hot so I was only out there about 20 minutes. I went with my husband to a store with no air conditioning. We weren't there too long but when I got in the car to leave I started seeing flashing lights. My husband figured that it was just too hot. I went home and got cooled off. I felt some better but I was sick for a couple of days following that.
Have any of you ever experienced anything like that?
Also, with the kidney problems that go along with
Lupus have any of you experienced repeated UTIs?
Ok, just one more, those of you with Lupus along with the pain in your joints is the always swelling that is obvious to the naked eye? The Dr. I saw a while back looked at my hands and said, "these aren't swollen" like if it was Lupus they would have to be. They are killing me along with my hips right now.
Thank you sooo much.
I know exactly what you mean about the "flashes of light". I have been living with Lupus now since I was diagnosed with it back in December 1992.
I was diagnosed with both Systemic and dyscoid, and by the grace of God, I was told I have a mild case, and was very lucky, but had be watched because it was quite possible that it could get worse.
For as long as I can remember, I was not too tolerant of the extreme heat. When it's very hot out, I feel like I am in slow motion. Everything I do takes effort and it can sometimes be quite bothersome.
If you get those "flashes" that I know all too well, you probably just need to drink some fluids, and eat something sugary.
I came back from my honeymoon the end of April (of all places, the Caribbean!) and have had to nurse a very bad sunburn. Needless to say, for the passed 3 weeks, I have been in pretty bad shape. I am so tired all the time to the point of having no energy what so ever at all all the time, And my joints are really hurting me. I'm only 30 years old and it's sometimes very embarassing to get out of a chair and not be able to walk normally for a few minutes because I'm so stiff.
For me, (and I know that each Lupus patient is different) I feel the most comfortable when my air conditioner is on, but not too cold. It's not good for Lupus patients to be in extreme weather conditions........either too hot, or too cold is absolutely no good for us.
Sunlight is a very common lupus trigger. Stay out of it
as much as possible. Always use sunscreen, year round.
Big hats and long sleeves are also helpful.
As for the swelling, I don't think that is common with
Lupus. Maybe he was concerned about Rheumitoid Arthritis.
There is painful swelling with that. He might also have
been checking for swelling of hands and ankles which
can happen in Lupus when there are kidney problems.
Bladder infections can be a problem as well as yeast
infections. Let's face it any kind of infection can
plague someone with lupus because our immune system
is compromised. Hope this is helpful. My lupus finally
seems to be in remission but I know if I don't take
care of myself it can pop up anytime. So, Take Care.
I'd like to disagree with something one of the other posters said. Swelling can be a issue with lupus! Lupus usually involves the joints and along with that comes joint pain and swelling. I too have lupus but don't seem to have any joint involvement. But at each and every doctor visit, I'm asked if I've experiencing any problems and they check for swelling in my joints.
On the other hand, a couple of weeks ago my rheum. said my hands and fingers were swollen but I have no pain--go figure!
I do have extensive kidney involvement but have not experienced any UTI's at all. Many people do however, but that does not go hand in hand with kidney involvement. Please drink lots of water. That really will help and I'm told that generally people who experience UTI's (lupus or not) dont' drink enough water.
[This message has been edited by renae (edited 06-02-2002).]
First of all, Stefanie, congrats on the marriage... An interesting side note about sun - I can't be out in the "real sun" - I break out in rashes and get red in no time, BUT I can tan my heart out in a tanning bed with no problems.
Kathy, I have RA as well as SLE, so I wouldn't know what to attribute to which ailment but my joints frequently feel "swollen and stiff" even when they are noticeably so. (I don't wear rings - so I only go on what I feel) Perhaps you can advise your doc that your hands swell significantly enough for your rings to be tight - although he may just write it off as being bloated (some docs are jerks).
I grew up in the deep south where ceiling fans were the main source of cooling on 95degree days like today. I generally don't mind the heat too much BUT I do drink a lot of water. AND I get UTI's ALL the time. I've gone to a urologist who did a cystoscopy a few months ago and said she didn't see anything wrong so she just "wrote it off" as being lupus-related. I get at least 1 UTI a month - I don't want to continue to be a slave to antibiotics and they even suggested I give up sex or any "sexual genital contact" for several months to see what would happen. Can you believe that? I'd like to see her "give it up" just to see what happens.
I get sick of doctors just blindly assigning my problem to SLE and not offering help or suggestions. I drink AT LEAST 100 oz of water (not soda, beer, juice) every day.
Thank you all for your replies.
I do drink quite a bit of water. I will try more.
The going without sex for months thing is a no-go! HA!
My husband was on my side on this one... go figure!
I go to see a Dr. on the 13th. I have heard good things about him.
Did the cystoscopy hurt?
I went to the Santa Monica Beach yesterday. I was with my father in law; he had never seen the ocean.
I was only in the sun for 20-30 mins. and I got a light burn and have felt bad since last night. Horrible headache and so tired.
I am hoping to get some answers on the 13th.
The cystoscopy is not supposed to hurt. They rub some numbing medicine on "the area". In my case, there was such a long period of time between the application of the numbing agent and the actual procedure that it did hurt. Not to mention, I think the doctor was particularly rough. And it hurt for days afterwards peeing - worse than any UTI I've had. BUT, my best friend had one a couple years ago and she said it was no big deal - it did hurt that evening to pee, but otherwise no problems.
It sounds like you need to make sure you have a wide-brimmed hat, sunscreen, and a long shirt to wear when you're in the sun. I've heard that there are two products that might be of help for you - there are shirts that have Sun Protection built in and there's some sort of rinse that you can wash your clothes in and it's got added SPF for approx 10 washings. (If it's a bikini, that's not exactly going to help!) You may want to talk to your doc about it.
My doc has me on Plaquenil to improve sun sensitivity. I've been on it about 9 months - and honestly, my sun sensitivity has gotten MUCH worse. (Don't know if it's the drug or the disease's progression) I've got to get the windows on my car tinted darker because even the sunlight thru the windshield makes me red and uncomfortable. I haven't noticed any increased fatigue as a result of sun exposure though - I try to keep a record of things like that.
I just wanted to add that I have had recurring problems with hip pain, and I just recently had one hip xrayed. I was told that I have calcific tendonitis in that hip. I'm sure I must have it in my other hip too, but only had one xrayed. From what I can find on the web, calcium deposits occur when there is chronic inflammation. My doctor told me this is just something that can happen with age, but my hip pain returned when my ana was going up. Coincidence??? I don't think so, and wonder if I have more than just inflammed tendons--I quess time may tell. Just wanted to suggest that you get a hip xray if you continued to be bothered by hip pain. Susan
Many patients are not only light sensitive, but heat sensitive as well. I am not able to stay in an enviornment that is hotter than 72F. I do best in 65-72F. If I get hotter than that, I pass out, see spots, throw up etc. Because of this I'm moving to a colder climate....Oklahoma isn't the most friendly state for those of us who are heat sensitive.
UTI's are common if you have a PH problem. To remedy a UTI, drink a gallon of cranberry juice in a 24-hour period and flush with water. The cranberry juice restores the acidity of your urine and kills the little buggers that were allowed to grow there in the first place. Urine needs to stay very acidic. On the PH scale I believe it's around a 10 or higher. Anytime you feel the burn coming on, drink a glass of cranberry juice. I know it tastes gross, but you can mask it anyway you like. The acid will still get to your kidneys and flush out the bad stuff. Sex usually doesn't affect the ureter as your vagina and ureter aren't the same hole...
Lastly, joints are not always swollen with pain, or painful with swelling. It's a case to case problem. Pay attention to your body and let it tell you what your symptoms are. If they aren't the "text-book" symptoms, take note of that and make sure your dr. takes note of it so you can be treated more effectively. Do not allow your dr. to treat you textbook style, your life depends upon it. With me, one week my hips hurt, the next my fingers, the next my back. Lupus skips around and affects different parts of the body without caring what it's doing. Sometimes it will rest in one particular joint for weeks or even months. That's the joy of Lupus, it's unpredictable.