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I live in the US and want to first say thanks for allowing me to use this site.

I have known I have Lupus SLE since I was 19 I am now 40. I just want to whine...I've always had flares that don't last long and was able to bounce right back unil recently. About 2 months ago I developed pain in both wrists the make it nearly impossible to use my hands. I have a toddler and 2 teenagers so I sorta need to use them. I can take steroids and the pain goes away until the dose in finished then within a couple of days the pain returns. I can't really take steriods long term because I developed Avascular Necrosis from them about 10 years ago. I currently take Plaquenil 200mg 2X daily and Imuran 100mg 2X daily...Lortab 7.5 as needed (I rarely take them because I hate masking pain) anyway nothing seems to help and I feel yucky all the time now...not a feeling I want to keep so I am looking for suggestions. I am also having issues with my SO because he has never experienced a bad flare with me and I ALWAYS put on a happy face and do business as usual (no one in my family ever really knows I'm feeling bad...I hide it well) now I can't hide it because the pain is severe and messing with my daily living...I can't comb my own a drink...heck sometimes I need help pulling up my pants. It's very frustrating because I feel like he in particular thinks I am not really in pain. He keeps commenting on how I sleep late (I don't think 8:30am is late...) we don't have sex and I'm being lazy...nothing is getting done...the house is dirty, etc and yet he won't go with me to the doctor or read any material on Lupus. We have been together 6 years you would think he knows how out of character this is for feelings are hurt and I hurt. Thanks for reading my rant...I thought I'd feel better but I don't...

2 Replies

I am afraid it is difficult to make the Doctor's understand never mind a partner.It must be difficult for you and I really do sympathise.I hope medical knowledge is getting better and can only hope that the understanding of Lupus gets better.Perhaps a word from your Doctor to your partner might help him understand what you are going through.I wish you well.


I don't know if this is a general thing with patner/husbands and family they seem to forget i have this.When my husband goes on about the pain in his knee,all i want to do is say try living in my body for a day.

Thats why i say Lupus is a lonley thing to have but thanks to this site i know you all understand.and the contacts that are here if you need a voice,but sadley not in the usa.

take care


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