I'm 38yrs old. I was recently told I had systemic lupus * not sure if I spelled that right*. I was told over 6yrs ago that I had Lupus but it was a different type and it was only going to cause me skin issues, such as rashes. I knew to stay out of the sun. I honestly thought it wasn't that big of a deal. I ignored what they told me to do. Went out in the sun, never wore protection on my skin. I just dealt with the rashes and went on with my life. In 2010 I became pregnant with my 3rd child. I really did not know anything about Lupus and had no idea that it could cause problems with my pregnancy. I had my son 1 month early and was on bed rest the entire time. I had never been so sick in my life. I remember I started losing my hair and I had no idea why it was happening. I thought it was from the pregnancy. None of my dr's at the time were even worried about the Lupus, never spoke of it. About 3 or 4 months ago I developed lumps that were painful and itched very badly. They were on my legs and ankles. I had thought it being summer time that I had been bit by a bug. When I realized the lumps were spreading and my ankle was swelling I called my Dr. My Dr had me come in and thought I was having an allergic reaction to something. I knew she was wrong but had hoped it would go away. I woke up the very next day with a lump on my other ankle and it was the size of a golf ball. I called my Dr and went right in. I could tell she was concerned and she told me she had no idea what was going on but thought that I should see a specialist for my Lupus. That was when the panic set in for me. No one ever acted concerned about me having Lupus. I never thought it was anything I had to worry about. I saw a dermatologist and the Rheumatologist and after having a skin biopsy I was told that that I had SL. The news hit me like I had just been told I was going to die. Never been afraid like that before in my life. I am always broke out in a rash on my legs, back, arms. I rarely get any type of rash on my face. I still get the lumps and they hurt bad at times and they itch worse then having poison ivy. There is nothing they can do. Steroids did nothing. The medicine I was given, which I can't spell it but it starts with a P, I can't handle the pain it causes my stomach. So basically there is nothing they can give me. I am always wondering what is going on inside of me. I know how horrible I look on the outside so I wonder how bad I am in the inside. I'm sad, angry. I feel like crap every day all day. If it's not all of my joints hurting then it's my stomach acting up. I was told 9yrs ago I had IBS. I think now it was the Lupus. My relationship with my kids father is ending because he can't handle me being sick all the time. I have no friends. I have no social life because I'm too sick to leave the house. My kids are all I have. I don't work. I'm on SSI. Computer and my phone and tablet are all I really have as far as communication with outside world. I have stayed away from message boards for support. Other people talking about their stories have scared me. Worried I will go through the same things that they describe. Honestly I don't know what to do. There are no support groups or any type of agencies in or around my area I can go to. I feel alone, and very angry.View Thread
yes I have been to many specialists for my stomach. I was told I had ulcers but I took the medication and have had no problem for a long time now. I have had many tests and they all said there was nothing wrong. I've been going through this for so long I have accepted that there is nothing that will change. I try not to worry about tomorrow until it gets here. It's scary and very painful. I have a hard time even talking about what I go through with my stomach because it's the worst pain I have endured. I was in labor with my daughter for 52 hours and never had any drugs and that was a cake walk compared to what I go through in the bathroom.View Thread
Thank you so much for responding. I have had so many terrible times with my stomach and I'm so sensitive to medications that I don't even want to try anything new. Seems like every time I try to fix one thing a million other things go wrong. Yes it was Plaquenil and I did stop taking it. I am not on any medications for the Lupus at this time. My main complaint when I went to the Dr's was the lumps I was getting. After trying steroids they came to the conclusion that there were no medications they could give me to help. They thought maybe a cream would work but it doesn't. I have come to realize that this is just something I will have to live with and deal with. My stomach issues are really another one of my main issues but after over 10yrs of trying everything you can think of nothing has helped. I'm just taking things one day at a time. I just purchased a couple of books on Lupus. I'm trying to do as much research as I possibly can. If there is any way I can help myself without taking medication then that is really where I want to be. Thank you again.View Thread
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