I have lupus along with fibro. not sure what else. But I do have brain fog quite often and I am tired alit. Also chronic sleep disorder was diagnosed with that 30 years before ever knowing anything about lupus. Sleep is so bad that sleep aides Dr he as given doesn’t work have tried so many that I spend nights in living room as not to bother my partner so he can rest, but really his meds knock him out probably wouldn’t affect his sleep. Ty for letting me speak.

I have been diagnosed with SLE since 2009. However, started having rheumatoid arthritis at age 15. Have always had certain kinds of Odin all through the years. You said your doctor is in the fence as to whether you have lupus or Sjogrens? I just want to let you know that Sjogrens is a part of lupus. The dry eyes and dry mouth and dry skin are Sjogrens and lupus. There are so many things that are a part of lupus. I also have Reynauds which is a part of lupus. This is where your fingers and ties are very sensitive to hot and cold, turning blue and numb when cold, swelling when hot. I would suggest reading all you can about SLE, get to know the disease and it’s symptoms. There is so much involved with it.

I have had ?? Lupus for 21 plus years. My first rheumatologist did the lab tests & they were positive. However he later called it “ connective tissue disease”. For insurance purposes. He said insurance would more likely cover tests for connective tissue disease than lupus. That didn’t happen. He did put me on plaquenil and I have been on it all these years. Years later &:different rheumatologists I had a skin biopsy that show dermatomysis. Eleven years ago I had problems breathing. Was in hospital for a week. Different doctors tried to tell me I had legionnaires, Lyme s disease all kinds of other things. Finally got a good lung dr who diagnosed inflammation in lungs with fluid around lung from guess what. Lupus. Put me on IV steroids & prednisone and immediately I was better. Also put me on another med can’t remember. I have always had extreme fatigue. Night sweats, aches & pains. Feels like the worse case of the flu shortness of breath Gerd is a big problem for me. Now at age 77 I am having tremors on my left side & symptoms of dyskinesia . Saw a neurologist who did exam & ordered MRI & DAT scan where they put a dyes into your brain to check dopamine levels for Parkinson’s. (Parkinson’s does run in my family). He said he thinks I have Parkinson’s. Dopamine levels are very low. So he started me on carbidopa levodopa. My question is is it really Parkinson’s or are the decreased levels of dopamine from inflammation from lupus. If so will new med help or make it worse. Also side effects of new med are dyskinesia which will be worse than the tremors I now have. Any advice?

Yes! Genetic predispositions are there, usually get triggered by a virus.

Any competent rheumy will tell you that lupus is a clinical diagnosis. They have to follow you and monitor you for years to begin to develop accurate diagnoses. Find one who will listen to you and stick with that one.

Dear Paula,
First off, I am so so sorry you are going through all of this. They say autoimmune disorders are a journey and they are so right. It is not a fun one though. It sounds like you have Lupus, I am not a doctor but listening to you it sounds like it. The key is to find a great rheumatoid doctor, if you don’t like the one you are with keep “shopping”till you find one with a heart! This is SO important! Even if it takes several tries. I know that this is scary but you can do this, you are not alone. Find some support groups on line so you can find people to talk to.
Also, you do not necessarily need to have positive blood work. This is a myth. If you show all of the other signs, that is enough for the doctor to call it as the disease.
Again, find support, start reading up about how you can help yourself through diet, start taking small walks.
And rest when you can and don’t feel guilty about it.
Talk to your family amd let them know you don’t feel well so they can help you out around the house.
All the best to you.
And always remember, you are not alone, we are all with you.
Your Lupus buddy,
Kitty