I was diagnosed with sle a year and a half ago. I have a consistent high sed rate, a high ana, and many of the physical symptoms for lupus. These symptoms are chronic fatigue, joint pain and swelling, sores in the mouth, chronic infections, and hair loss.
I also have an eating disorder. Stupid, I know. But here we are.
What I want to know...I am realizing that some of the physical symptoms I am having could result from the eating disorder. Meaning, the eating disorder may be making me feel so sick. Not lupus.
But what about my consistently abnormal lab results? Can eating disorders cause that too? Or is this wishful thinking? tackling my eating disorder seems more plausible than beating lupus.
I am on plaquenil. I have tried imuran and methotrexate. Both make me pretty sick. Steroid injections made me feel great for a while but I developed Cushings and gained 20 pounds in a month and a half. Not good for the eating disorder. But I lost that 20 pounds with help from my doctor. Who does not know about the eating disorder. Still stupid. I know.
Between these meds, the other ones to help with the symptoms (folic acid, ibuprofen), the antibiotics for the frequent infections and the diflucan for the resulting yeast infection, I have had it.
On Christmas day, I stopped everything but the Plaquenil. Its just all making me so sick, and none of it seems to make me feel any better. I wanted to stop feeling nauseous long enough to enjoy my little ones Christmas.
No matter what I try, I feel awful. Can anyone out there help me off this roller coaster?
I know I may have brought this on myself. If I have, I can fix it. I just do not know how to tackle all of this.
I have SLE and an eating disorder that i have battled with long before my SLE diagnosis ... that said, my doc already knew about my eating disorder and stressed how important proper nutrition was in managing SLE. Also, depending on the type of ED, you may be purging some of your meds, and so notice some conditions only continue to worsen. Managing the ED, even getting it a little under control, will help manage your lupus
I'm a pharmacist and I'm in the same situation as you all (ED then lupus diagnosed just a few weeks ago) but I wasn't sure if both conditions were related. But given the number of cases involved, there must be a link, somehow.
Anyway, 5 or 6 years ago, I saw an auntie, all swollen with all the medications she was taking because of an auto-immune disease (she's a MD). Then I met her again 2 years ago, and she was completely transformed, all skinny and healthy. My mum told me then that she became some kind of vegetarian but I wasn't very interested.
After finding out about my lupus and dreading the treatments (corticosteroids, methotrexate, etc...), but most of all their side effects, I thought of her again and researched on internet about lupus and diet. Doctors generally think there is no link. I found a book called "Lupus recovery diet" where the author, affected herself by lupus, recovered completely from her illness by becoming a vegan. I'm half skeptical, half convinced given my auntie's personal case, but I decided to give it a try because I have nothing to lose and I'd rather try than take the heavy medications.
Anyway in the book, the author evokes the "leaky gut" theory (not confirmed by any medical trials) explaining that the gut lining could be damaged (in our case, maybe by the ED??) and so, bigger food molecules could pass through it, making the antibodies attack them because they only recognize smaller food molecules. It could be true or not but it makes a link between ED and lupus.
I hope this reply helped you a bit.