Could Use Some Advice!
Hi, I am new here. I have been doing some of my own research for over a year now, and I have been thinking Lupus might be something I should consider. I never really pursued it though, because I really feel sometimes like I am such a hypochondriac, (at least that is what people must think!). I did bring it up at my last physical last spring, but my doctor just brushed it off.
Anyway, the other day I had to go to emergency for a rash that got so severe, I couldn't stand it! Can I just give you my story, and some of my history, and get some advice from anyone who could help?
Saturday I was outside with my kids playing in the snow. After about 20 minutes, my cheeks and ears started feeling itchy and burning. I just thought maybe there was something in my hat making me itch. Then, I felt the rash spreading onto my buttocks! I had to go in and get my ski pants off so I could scratch! Anyway, it went away after about half an hour. The next day, I went out to the truck and put the girls into their seats. As I was driving downtown, I started feeling my ears and cheeks start burning again! By the time I got to my bank, the rash had spread all over my legs, to the point I couldn't stand it! I had to undo my pants, and get my arms in to scratch! I went to emergency, and they gave me some antihistamines. I felt a bit better after a few minutes, so I left. On the way out, I stopped outside to talk to a friend, and by the time I got back into the truck, my face was burning and itching again! And, it has happened 3 times since then - whenever I go outside! Has this ever happened to anyone, or is this something else? I definately have the "butterfly rash", but it only seems to last for awhile after being outside, so maybe it is something else? I feel crazy! I don't understand why if I am sensitive to UV light or whatever it is, why my legs and arms sometimes get itchy too! Any ideas?
Anyway, I did go to a doctor, a different one, and this time I got the courage to ask about lupus. He looked at the pictures I had taken on my camera the day it was so bad, so at least he saw the rash. I had also made a list of other problems I have had in the past that always seem to be brushed off, and he actually looked back over my file, which no one else has ever done! So, he did send me to be tested, the ANA test, or something like that. Can I list some of the things I told him, and get your opinions? I am afraid that this time, if the test doesn't show anything, they will just tell me I have had another allergic reaction that they can't explain, and brush me off again! I would like to have some information to be prepared next time. And, if you don't think it is Lupus, please tell me so I can keep searching.
I have been into emergency at least 3 times since I was 16, (I am 35) for severe stomach cramps. Nothing has ever been found. I have had colonoscopy and gastroscopy, nothing was found except hiatus hernia and they say I must have IBS, as they couldn't find anything else. I don't think anyone believes how bad the pain gets.
I have been into emergency at least 2 times in the past 3 years for chest pains, couldn't find anything.
When I was 26, I lost about 20 pounds for no reason, and had bad dizzy spells, fatigue, and was sick alot, which I thought was maybe just a flu I couldn't get rid of. Nothing was ever found out, and when I made one visit to emergency with stomach pains, my doctor prescribed antidepressants.
When I was pregnant with my first daughter in 2002, I had such severe hip pain, that I couldn't work, (I was a nurse) and could barely walk. After she was born, I broke out with a very severe rash. They never found out why, just took me off the iron pills I was taking for low blood count. It eventually cleared up, but I was a mess!
Last year, I was having aches in my wrists and knuckles. I had bad rashes on my hands that I couldn't figure out the cause of. I was feeling very tired, I can't explain how bad, just unbearably tired! And, I didn't feel good - not sick - just never felt good. This was when I first started researching, and found lupus came up alot.
Then, last week I thought I was getting the flu. I was very achy for a couple of days - never got sick - just achy and naseous. I have had headaches and felt dizzy for the past couple of weeks. I had a low grade fever when I was feeling sick, but it didn't last long. After that, I had a couple of days where it really hurt to breathe in, so I figured I was getting a cold, and I did get a bad cough. I don't have any cold symptoms - just a really bad cough. And, it has been a week with no improvement. Then, the rash happened. I don't know what is going on. Some other problems I have had in the past, but I don't know if they were related or not, as I never really paid attention or took note of when they were happening, are: sensitive to sun - always need sunglasses outside, even on cloudy days, menstrual period irregularities, (in fact I miss months, and was due on Sunday), headaches and dizziness come and go, pleurisy 5 years ago, heart palpitations and rapid heart rate, depression, blue toes when they are cold, and decreased appetite, (actually having right now as well).
I don't know what to expect, if my results come back with a positive ANA, or however they diagnose it, at least I will know for sure where I stand. But, if it comes back normal, I just don't know where I should go from here. I have felt so embarassed about all of these "little" things that seem to keep happening to me, and I am afraid my doctors all think I am neurotic. I don't go to them for everything, there are lots of times I just suffer at home.
If anyone has any advice for me, I would be grateful. Thanks! (I apologize for the long post, I just need to express all of this to people who might actually listen to me!)