New diagnosis: Lupus, and more surgery

Hi Ladies -
I did my five days "semi-unconscious" in bed, to get rid of my levator pain. It didn't work, and now I'm in "withdrawal" symptoms (3 hours sleep in 48 hours, and lots of sweating even in a/c!) from all the medicines, and in more pain than ever. I've scheduled surgery for the levator pain for July 28th - can't get in earlier.

I saw the Rheumatologist today, that I had been referred to by one of the GYN's I"ve seen. He had the lab results back - they've been done twice now. He diagnosed me with Lupus. He said that it is not related to the pelvic pain. AAAAGH!!! You'd think that would be the reason for it all. Also, during the routine x-rays he took, he found that my pelvis had been fractured and had arthritis. We suspect that it was when I was pregnant with my first son - 15 years ago. I remember complaining to the OB then that it felt like my pelvis had broken - he said it was just normal relaxing of the muscles. Now we know.

It's been a long day. I hope I can sleep tonight. My nerves have been shot waiting for the results, and I've not eaten well in days. Not good for me, so I hope to get plenty of rest this weekend. take care, and thanks for listening!

Susan

Susan,

I wish there was a way to jump through this screen to give you some extra comfort. You are going through so much right now, and I can feel your sadness, and frustration in this post. I am so sorry to hear that the resting did not help, and you are scheduled for more surgery. Your Rhuematologist sounds very thorough, that is good. I do remember seeing some other women posting on the boards about being diagnosed with Lupus. I believe they found a Lupus support board on the web, but I don't remember seeing a web address for it. I hope you are able to get the sleep you are looking for, and that your appetite returns. We will be here for you, so anytime you need to vent, feel free. We will listen!

Susan,
I do not post here very often, so you probably do not know me. My heart goes out to you, you have been thru so much! I am sorry that your "lost weekend" did not help your pain, and that you have to have more surgery. Your Rheumatologist sounds like he is very thorough, and can probably help you find a support group. I am sending cyber hugs and prayers, and know that you will get thru this.

Susan, I hope this surgery will help with the pain. You've been through so much. I wish I could do something to help. I will keep you in my prayers.

{{{Susan}}}
Sending extra hugs {{{{hugs}}}} your way. You will be in my thoughts and prayers.
Hugs :-)

Susan:

I just wanted to let you know you will be in my thoughts and prayers. I'm so sorry you are going through such a difficult time.

(((HUGS))) Lisa

P.S. If you go to http://www.lupus.org, this will take you to the Lupus Foundation of America's website and they have a health forum there that might help. I have never posted on that board, but it might be worth a try. Good luck to you - I hope this helps you out!
[Edited by momof1 on 06-19-2000]

Susan I am so sorry that you are having to go through so much. I know where where you are coming from since right now I had a positive ANA and they think it is either early lupus or rheumatoid arthritis. I go day to day and that is all I can do. I have done checking on the internet about both and there is a lot of good information out there. I have not found a good support group on line yet but I am still looking. And then on top of all that I have to see the gyn specialist because my estrogen level is very low.I see a rheumatologist in mid July. We can never understand why so many things get dumped on our plates to handle all at once. I myself have been so impatient thinking what now and why now and I still have trouble with that. Hugs and prayers to you Susan and know that we are all thinking about you during this rough time.