View Full Version : Not sure...

08-24-2009, 05:09 PM
Hi everyone, I want to start by saying how great this board is, I was feeling pretty lost and alone and then stumbled across this and cant tell you how great it is to know this is here.

Here is where I am.. I am a happy 26yr old woman who has always been healthy and I have a wonderful loving husband and a beautiful 7 yr old daughter. Earlier this summer, I was having a normal day and all the sudden I was having a terrible pain with deep breathing, I thought it has to be plursie(bad spelling I know) and finally had to go to the hospital for the pain, after going all my tests and EKG's looked normal, but the doc was able to find a severe kidney infection and when I went back to my PCP she sent me back to be admitted due to an extremely high white blood cell count, and since then my health has went downhill quickly, I never felt like I had a kidney infection, no pain no problems urinating, but obviously it was bad, then I had reaction to the meds, I had little bumps all over my fingers, which went away after a while and a round of steriods, which caused all the skin in on hands to peel off. And now I am left with a near constant fatigue, sometimes really bad, and my worst symptom is I have random spots of swelling. Started with my feet, I would randomly swell up in spots on my feet, with swelling only lasting a day or so and leaving no bruises behind, then it came to my hands, arms, and hips. I have been allergy tested, and no known allergies came up that would cause such a reaction. I have low Vitamin D as well as very low Vitamin B. I feel like I have been hit by a truck most days and others I am ok, not myself but ok. I am going in for Lupus testing in about two months, and I am ready for an answer, I see here that some have waited years for a diagnosis, and to those I applaude you, you are stronger than most. I am scared that I wont be able to work anymore, I am a waitress and I know my job is phsically demanding, I am scared that I wont be able to keep up with my young daughter, and I am scared that I will become a burden to my husband. He is loving and supportive and wonderful, but I am afraid that after years he may tire of me being tired. I have a great family and a wonderful support system and I know that I am very blessed to have that.

Do my symtoms sound like Lupus? I have done alot of online research and I am fairly sure that is going to be my diagnosis, but I would love to hear from some of you who have been where I am at. I have tested negative to Lime disease, chronic fatigue syndrome, and countless other tests, Lupus feels like my rule-out disease. Any advice or answers will be greatly appreciated.

08-24-2009, 06:40 PM
hi Alisha,

first, welcome to our family....this is the greatest group of people that i have ever had the honor of sharing with and learning from. You have found the place where you questions can be answered and your fears can be soothed.

i can't tell you if you will be able to continue to work, or if you will be able to continue your life as normal. Lupus affects different people with different symptoms, complications and at different levels. There are some treatment options that work great for many people. Sometimes, lupus can go into remission and stay for years....hopefully you will be one of these people.

are you going to see a rheumatologist for your lupus testing? this is the kind of dr. that treats lupus. a lupus diagnosis requires meeting certain criteria which includes positive lab tests, and physical symptoms. I recommend that you browse around this forum, look at the different symptoms that our members deal with, and make a complete list of your symptoms. Also, your list should include symptoms from the past....even if they are not present now. Lupus flares are intermittent, and they affect different parts of the body at different times.

good luck....stay with us, we will always be here to help.

08-24-2009, 07:34 PM
Yes I am going to a rhuematologist, I am hoping for an answer, thank you for your kind words and advice, it is greatly appreciated.

08-24-2009, 09:48 PM
Hi Alisha! Welcome to WHL. I am a newbie too, just joined last week. I can't tell you what a relief it was to find this community and have people who understood to chat with! I am so glad to hear you have a good support network around you and a lovely daughter and a caring husband. I have two boys and a baby girl. I really feared not keeping up with them, and not being the mom I always wanted to be. But children are amazing. They know when they are loved, wether we can run and play hard all day, or read a book and play a game of sorry.... it's in the attention, not the amount of energy you expend! I have decided that i won't complain about my pains in front of them. They can see it for themselves more than I would like as it is. My hubby and I have code words for how i am doing: if he asks how I am doing, if i hurt really bad I say "It's been a really good day". If it's been a good day for real: I say: "I am doing GREAT!"
Let us know how your appt goes. Praying for you,

08-25-2009, 06:12 AM
hi deb....what a great plan you have...you are so right, children don't need for us to use words...they have the instinct to see what is going on....i love your code words.

congrats on doing such a good job of learning to live with lupus.

08-25-2009, 10:48 AM
Hello and Welcome Alisha :yes:
As you have seen, this forum is filled with the most understanding, caring, kind people you will find. Our family is now global and you will receive support from all over the world.
As has been mentioned, we cannot tell you if your symptoms are due to Lupus or not. It does sound like you might have some sort of auto-immune disorder happening. In fact, it is quite possible that you may have more than one auto-immune issue happening at the same time. This phenomenon of co-existing/over-lapping diseases is quite common.
Also, as has been mentioned, Lupus affects each of us differently and it even changes within us. Lab results that are normal one month can come back positive the next month (and vice versa). Also, the symptoms that you suffer from today may go away next week and/or be replaced by a entirely new set of symptoms. It is partly due to these reasons that Lupus is such a difficult disease to diagnose and why the diagnostic process can take months to a year.
In the meantime, we are here to help you deal with your symptoms, manage your illness, to answer any questions that you may have, to provide you with information, and to make sure that you know that you are not alone.
I am glad that you are here!!

Peace and Blessings