I dont understand :. (

[kkgirl]

I feel like thos is all fake ots so confusing. I have good days and bad. I feel crazy like its all in my head

[kkgirl]

This not thos

[kkgirl]

Its not ots

[IrishLupie]

I don't really think many of us fully understand. In fact there are aspects of this disease that clinicians don't really understand either such as exact mechanisms of action of drugs and such. But your situation is not strange; all of us have good and bad days all we can hope is that we have more good than bad. It's not in your head and you're not crazy. There is a certain amount of it that's mental (aside from the cognitive symptoms) but you will learn to control the mental side of it with time. How long have you been diagnosed? These feelings tend to be more prevalent in the early months/years but then they tend to settle and only come to the surface every so often. But I can assure you you're not crazy or anything.

[kkgirl in reply to IrishLupie]

I have not yet been diagnosed fully. Iv been having symptoms for almost 9 years but in feb my ana levels were "finely" elevated in fact off tje chart elevated my new doc said I wasnt growing my old doc is a wacky and has sent me to rheumatologist so im waiting to see him. I HAVE no clue what I have realy but my doctor thinks its lupus because I have alot of symptoms for lupus. So im not sure im just very frustrated. Im only 20 almost 21. And this has been going on since 12. The symptoms I have are real and u can see that they are. But I have this part of me thats sying it must just be in my head. So frustrating

[lupus-support1 Administrator]

What you experience is very familiar to many people. Many people report that they often feel they are not believed and that it is "all in the mind". Getting a diagnosis for lupus can be very long and protracted. For some, it can take years, which is why you need to see a lupus specialist ie someone who sees and treats lupus patients daily at a clinic or hospital. Not all rheumatologists are experts in lupus and some have never treated lupus.

Lupus is often called "a disease of 1000 faces" because it can mimic almost every disease. Blood tests alone are insufficient to diagnose lupus and there is no one single test. Diagnosis is dependent upon the skill of the doctor which is why you need to see a lupus specialist. You must insist that this is what you need.

Apart from the physical aspects of lupus, there is also the psychological which is why LUpus Patients Understanding & Support (LUPUS) offers online psychological support.

Be well!

Ros