View Full Version : pleasure to be a member

05-16-2005, 10:09 PM
I am new memeber, I have recently be told i have lupus. It has not been easy for me to deal with. I have been on a emotional roller coaster. I have been so depress.

I am finally relieved to know theat the syptoms are not in my head as i was told in the begining. I have been extremely tired and my body has been in tremendous pain. I am so happy to find a site where there is people who can relate and understand how i am feeling and i can share and help and offer comfort to them. It is a pleasure to be member of this family .Thank you again, for welcoming me into your family.

05-18-2005, 06:38 AM
Hi Jacque: :lol:
You are indeed welcome to our forum and our family..all of whom know exactly how you feel about finally putting a name to your illness and knowing that YOU ARE NOT CRAZY AND IT IS NOT ALL IN YOUR HEAD!!
Please know that we are here to let you know that you are not alone, that we want to give you support and comfort and information!!


05-18-2005, 02:29 PM
Hi Jacque! Sorry to hear that you are having a bad time. I'm new to the group also. Reading about other people going through the same emotional roller coaster is a comfort because we are not alone. Expressing yourself maybe another way to help alleviate your frustrations. Being in this group really helps me. I hope it helps you. Take care, Ruvi

05-18-2005, 07:33 PM
Thank you all for welcoming me.
It been alot easier since i found this site.
I have been able to relate and find comfort to know that others are there for me and I can be there for them. It has been a hard couple of months for me. I am now going thru tingling in my hands and feet, my skin burns and itches these are all new symphtoms to me. I was wondering is this part of having lupus. my husband thinks its all in my head. I am begining to wonder if he is correct . If anyone out there have or had these sympthoms please let me know. that I wont feel I am going over the edge.

once again thanks for caring

05-18-2005, 10:19 PM
Hi Jacque, Go under the forum for Newly Diagonosed. There is a posting about severe itching. Yes, I think it does come with Lupus. The burning sensation under the skin that scratching doesn't satisfy. I went through that in the early stages and it lasted on and off for about a month. My regular dr. said that it could be scabies. How awful is that!? Then the derm. dr. said that it was a product that I was sensitive to and that I needed to cut my long nails. The only thing that I could do at the time was double dose on the Benadryl at night so I would knock out. And even if I did wake in the middle of night, I had to put a hot or frozen wash cloth on the areas. At the time, it was on the top of my thighs. When the itching went away, I was stuck with nasty raw areas of skin. I didn't wear shorts shorter than my knees for years to come. I hope you have a good dr. Hopefully he can give you something for it. Ruvi

05-19-2005, 05:57 AM
Welcome Jaque!!! So glad you found our home and can get some support and know you aren't losing your marbles. I think nothing makes me madder than to hear someone say it's all in your head. I had a dr about 5 years ago that said that and I let him have it. YOU know your body better than anyone else. My dh, unfortunately, used to say the same thing. UNTIL he talked to a friend who's wife also has Lupus. I think maybe the s.o.'s of anyone dealing with a chronic illness tend to say stuff like that because they feel helpless. If they can make you believe it's not really there, then they don't have to face the fact that they can't make it go away. Does that make sense?
Anyway, welcome to the boards. I hope you find peace and support here. I know I have. :) {{{HUG}}}

05-19-2005, 06:05 PM
Hello Jacque,

I just wanted to let you know you are not crazy. In 98 before I was diagnosed those where my sympotoms too. Itching, burning, and unfortunately I had hives and swelling to go along with it. Thank goodness you are experiencing that too. My doctors keep telling I had an allergic reaction. Final an herbalist (of all people) diagnosed me with lupus. There are medications (anti inflammatory) that can help with the itching and burning talk to your doctors about your options. Glad you joined.

06-13-2005, 10:14 AM
Hi Jacque, I sure identified when you said your husband didn't believe you. Mine has called me a hypochondriac for years. :oops: He is only just begun to accept and acknowledge. So hang in there, KNOW in your heart that all these symptoms are real, and DO NOT let anybody lead you to believe they are in your head. Change docs if you have to but keep hour head up and keep plowing ahead. :P