Anyone with Advice....please. My sister is a different person and I think she has Lupus

My sister graduated from college ( I say this b/c now she doesn't even know what a credit card is and seems to be in a fog all the time) and used to be this bubbly fun person. Now---she's always down, in pain, going to a new doctor, etc. This has been going on for 6 years now and noone knows whats wrong with her! She has gotten so skinny...can't work b/c she says her legs hurt her so bad. She has migraines and goes to bed so early. When she's with the family...we all feel liek she's in another world. It's so strange. We want to support her...but we can't even talk to her because she doesn't seem to listen. She has a 10 year old son who unfortunatley has to live with her symptoms too. If anyone has any advice ...please feel free to write me back. IS this how it happens? all of a sudden...all this pain and living in misery? Shes 35 and lives like shes an elderly ill woman. I just dont understand. Has anyone else experienced this before? What should she do..?


Thank you for caring soo much to write me back. I am so sorry that you are suffering from this disease also. My sister has been to sO many doctor’s that its hard to tell if she’s with the right one. She is one Medicaid and having a hard time keeping any job at all. I, as an Aunt and a sister am suffering too. I just want to help her. My poor nephew,.,doesnt knwo how to swim and has been offered swimming lessons ,…but, my sister is too tired to take him a 730pm!!! He has social anxiety issues and is being bullied at a christian ( very well paid for) school. He doesn;t speak!!! Its like hes gone mute!! Soooo- —its affecting my sister and my sweet young nephew and it eats me up inside b/c I dont know what to do!! I have a 4month old daughter…and being a mom…nothing coujld get in my way of making my daughter live a happy life. MY sister lives in her own little world…consumed with testes and doctors and " WhATS WRONG WITH ME?!" …it mAKES ME CRY. Thanks for your support…I hope we get some answers soon…:slight_smile:

I have a very different kind of question than others ...i think they all gave you great advice. How many drugs is your sister on? If she is on more than a few....4/5 at most and is she on sleeping meds like ambien. There could be great chance that part of problem of fogginess is over medicated. This is huge problem that really needs to be spoken about more.

She also sounds like she may have major depression...which can make your feel like your brain is in fog and you sleep all the time. Jodie Foster just made movie in last year called, 'The Beaver' it is out on has it see if mel gibson character acts a lot like your sister.

Also...if she is going to more than one doctor which it does sound like....make them start working together. That means they email or speak to all of her doctors so she not being over medicated and they can discuss what kind of doctor should be her primary. As primary....he is like the leader of her doctors.

I was over medicated and lucky that eventually great pain specialist did just what i am saying ...he sent letters to all my doctors so they know exactly what he was putting me on and why. He expected them to write/email/call him with same info...including my counselor. This stopped a lot of double medicating me by different doctors for same issue.

You did not say why your sister leg's hurt....arthritis? Has she been sent to endocrinologist? Rheumatologist? Plus she needs pain specialist for her migraines. Migraines have a lot of psychological issues to them, I found out from my pain specialist.

I feel for her son...i was diagnose with SLE with RA complications in my twenties...i read many books about chronic illnesses and children before i tried to get pregnant...which i never could. In one way it was okay since it is so hard on children..they must grow up and often become care takers for their parents. I also was able to help take care of my nieces...after my brother died at early age when his daughters were little. So i got them at least 1 day per week until they hit jr high when they were able to do sports after school or walk to their mom's work. I still saw them often...and felt like they were my kids in many ways...

BUT...i got sick a number of times in front of them...and i can still see the fear on my niece's face...she was so afraid i was going to die too. I had to really work on telling her that even though her dad and i had similar illnesses...i was not going to die soon from it. SHe was stuck with me for long long time!!

But it was hard on her...and her sister was kind of child that just did not understand how if i looked okay why some days i had to do quiet things vs something very, I often thought it was good i did not put a child through my illness...though i often wish i had one too.

There are counselors who specialize in this ...who can use art and other fun ways for the child to express their anger and frustration at having a parent who just cannot be there for them all the time. Even if you encourage the child to paint out his helps..and talk about it with him...what painting means to him.

But just so you know...when i was over medicated...people told me i even drooled and did not realize it!! so not knowing what a credit card is...yea is sad...but they start with few drugs than next you need drugs for side effects of those drugs so next you know you are total zombie...and why doctors do this is not right...and needs to be stopped! You are much easier patient..than one saying hey do your job find out what is wrong with me now.

Yea i hope she has decent internist just to do basic work ups on her....and she should be sending her to different specialist so they can rule out things like SLE, depression , arthritis etc.

I am so sorry but i give anything to have sister like you!! She is so lucky ...and really with help her son can come around and get more self confidence and feel loved. But it will take a village ...she cannot do it on her own hard for healthy single mom much less one that is sick. GOOD LUCK