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!)
Two of my cousins have lupus, but I think only one of them ever experienced the sensitivity to sunlight. She had to cover herself completely, long sleeves, pants, and a big floppy hat everytime she was in direct sunlight. I don't know all the details, I just remember her having bad rash outbreaks everytime she was in the sun. When they came to visit us in Hawaii, she had to cover up almost the whole time -- poor thing!
Not sure if that helps... Hope you get some answers!
Try not to get to anxious - that doesn't help you at all! :o)
I realise that's easier said than done, but if you do have lupus stress really sets it off and the symptoms are much worse.
The blood tests will show if there is something wrong with your immune system, whether they actually diagnose lupus or not. Once you have those tests back you can then take the next step.
Somewhere in this forum there is a list of criteria that are used to diagnose lupus. I think there were 11 criteria and to be diagnosed you need to have 4 of the symptoms. Sorry, can't remember where I read it, but have a search and you should find it.
Take a deep breath and try to relax.
ps - apologies to everybody, I keep spelling lupus wrong in my posts (I keep writing lupis). OOPS!
pps - my skin sometimes reacts badly to the sunlight as well.
ppps - and don't worry what other people think of you!! I sometimes wonder if people think I'm a hypochondriac as well. But I try to shake it off as quick as I can. It's not healthy for you to think that way. Believe in yourself and look after yourself and things should get better.
Welcome to the Forum! :D I'm so glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you! :D
I'm really sorry that you are going through such a hard time. :cry: I know how frustrating it is to be so ill and not to have a diagnosis yet. I hope that they figure out what is going on very soon. Please keep us posted and let us know how it goes!
I have the same problem as you with regard to my bowels. I suffer from SEVERE bowel pain (seriously, I pass out from it) and was diagnosed with Irritable Bowel Syndrome practically from birth. The pain was so severe that they actually thought that I had Crohn's Disease (it's in my family) or at least Ulcerative Colitis, but they only found one ulcer when they did a Colonoscopy in November 2006. I also have Celiac Disease and ten food allergies. I have also just discovered that I am Lactose Intolerant. My Gynaecologist is pretty sure that I have Endometriosis as well. Have your doctors ever looked into Endometriosis or the possibility of you having any food allergies or intolerances?
Keep well and God bless! :)
Thanks everyone for your replies. I don't know if maybe I shouldn't actually be posting here, as I don't even know if what I have is Lupus, and I am beginning to think I won't ever know what is happening. I had to take my 2 yr old in to the clinic this morning because I suspected she had an ear infection, (turns out she does). While I was there, I thought I would ask about my test results, and they said they were back. I was able to see my doctor, and he looked them over, but said everything so far looks normal. The ANA and a couple other reults weren't back, but I'm not expecting them to show much. He figures I am just having an allergic reaction to something. I have been on antidpressants since my youngest was born, for postpartum depression, so he suggested I cut back my dose to see if that is causing a reaction. I'm not prepared to do that, as I just feel that I have been feeling better in that regard, and I don't want to mess with them.
I went out to the truck after and I just sat there and cried. Then, I came home and cried some more. I am probably just exhausted because of being up with my daughter all night, but I feel so discouraged. This rash that I have been getting, doesn't seem to have any reasoning behind it! Sometimes, it gets really bad when I am only out for a couple minutes, the next time I can be out for 10 minutes, and it doesn't get as bad. But, I am just so tired of it! My face feels like it is burning, and I am starting to see some evidence of scarring on my face. My legs itch sometimes, then my hands, sometimes my palms and my feet. There is just no pattern to it! Except going outside. I know my face will be red, with my eyes looking like a raccoon! :oops:
I was just hoping that even if my bloodwork didn't show signs of lupus, maybe it would show something that could make them keep looking into this for me. I thought I was finally going to be heard this time.
I am sorry, I am just feeling so worn down today. I am tired of feeling "not right", and acting as though I am OK. :cry: