View Full Version : Trying to figure lupus out

05-28-2005, 12:17 AM
Hi all,

I am a single mother of a five year old and have suffered from severe fatigue for several years. My doctors said it was stress I worked too much, didn't sleep enough, and that everyone is tired. Last February I got really sick and by the end of April I couldn't keep food down. I was diagnosed with a somewhat rare stomach disorder called gastroparesis by a wonderful doctor. After seeing him for several months he said I had other problems and my primary doctor needed to send me to a rhematologist, which gasp she did on my first appointment. After fighting her for months to see the other doctor. The rheumatologist said that my blood tested positive for lupus and I have severe fibromyalgia. I have been losing hair for months luckily it started out really thick. I have the sores in my mouth and in the corners of my mouth. If I am out in the sun I turn bright red. I am soooooooooooooooooooooooooooooooooooooooo tired and in sooooooooooo much pain 90% of the time. It is a struggle to go to my sons baseball games.

I don't know how to handle this. I am scared freaked out mad depressed and then just too tired to feel anything else....lol. My house is in chaos because living alone I can't get it clean. I love to garden but can't stay out there very long. I feel like a horrible mother because I sleep or rest so much and my family and friends don't get it. Is there anything I can do to help me feel more normal or how to I deal with this change in my life. I have already had to change my lifestyle once in the past year and need help to figure out how to handle this........PS I love to write can you tell?

Thanks for listening I thought some of you here might understand where no one else does.


05-28-2005, 07:14 PM
dear sburton,

I know how you feel as I am feeling it , too. I would also be intersted in any input from others. I am newly diagnosed also. I am asleep more than I am awake.

Pain is a major factor and my rheumy has only prescribed Cellcept for treatment. ( Would Cellcept cause a flare and cause these severe symptoms?)

Any input would be greatly appreciated. :?


05-29-2005, 11:11 AM
Hi mitwit.

Cellcept is a powerful imniosuppressent which will cause extreme fatigue.

Cellcept will stop a flare, usually. I am worried about why the doc chose to use such an extreme drug so quickly in treatment. What are your symptoms?


We all understand that feeling of taking the trash to the street just might actually cause your death. Have a talk with your son and ask your friends and family for help.

I found that most friends understand and help either by taking my child or coming over for a cleaning party. Also they started a flare sitting program where they take her so I can rest.

The meds, depending on what they give you will help with the pain and energy. You will always need more sleep than others though.

Honestly hon the hardest part is usually diagnosis. Once you have that you usually stop being reffered to as "that crazy lady" by the docs office.

If not switch docs. One who doesn't believe you can cause irreversible damage.

If you ever need a sounding board either of you just get ahold of me. I've been diagnosed for 8 years now and know the ropes.

All the best, Betsy

06-02-2005, 08:24 PM
I understand your daily stuggles. I have been through loosing my hair and sensitivity to the sun, I have RA now. I have to trust in Christ every day, being thankful every day I get out of bed and can run. It is Christ who has given me life, no matter what kind it is, I am so thankful.

06-03-2005, 04:52 AM
Hey there. Well where should I start? ;) I'm not a single mother but my dh works odd shifts for law enforcement so sometimes I feel like one. I have a 7 year old boy who is a bundle of energy!! For your house, don't stress over it. My theory is - if it isn't ready to be condemned then it ain't that bad. :lol: Seriously I get really tired (I work full time too) and just hurt and the last thing I want to do is spend what little energy I have cleaning house. I'd much rather spend it with my child, or dh when he's home. I just try to make sure there's no dishes in the sink, nothing growing in the toilets and tubs, and we have clothes to wear. The rest can wait for a better day (or for dh to get fed up with it and do it himself ;) ). We also have a LOT of board games and cards so I can lay down and play those on my really bad days but still spend time with my son, that and reading books. Thankfully he can read now so we take turns.
As for friends and family, I'd give them all the information I could on my condition and let them read it. It really might help for them to talk to someone else with the same thing, or even take them to your drs appts. I gave my family information on mine for them to read. For my dh, it took talking to a friend whose wife also has Lupus for him to understand or at least be more understanding.
For outside, that's a tough one for me too. If I am out there more than 5 or 10 mins at the time, even with sunscreen and hat I am in bad shape. Usually I just really push my limits cause I hate "giving in" to this thing. but do make sure you are covered before going out, o and I really don't recommend pushing your limits you'll pay for it later. I always do but seeing that smile on my son's face is well worth it right now.
{{{HUG}}} I really hope you start to feel better soon and get the support you really need from friends and family.