Welcome to the forum !
It might help you to know what can be expected from doctors who are doing a competent job.
Presumably it was a dermatologist who diagnosed the lupus and presumably there is no doubt that you really have skin lupus. Ideally this would be confirmed by biopsy but some doctors are confident and competent enough to recognise very typical cases.
The dermatologist can be expected to closely question you about general health, health history and other symptoms. He might also order blood tests and a urine test as part of the process of deciding whether to refer you to a rheumatologist or not. The main thing is that these tests must be done when skin lupus has been diagnosed to determine if there is also systemic disease, whoever does them, the dermy or the rheumy.
There are three main sorts of lupus specific skin disease. Specific means associated only with lupus and usually biopsy proven. The three groups of skin lupus are :
Discoid lupus, the most common sort not usually associated with systemic disease; most oiften on the face and scalp. If it below the neck it might have some systemic symptoms and blood work too
Subacute cutaneous which is often associated with various less serious symptoms of systemic lupus and relevant blood work but rarely with organ involvement;
The malar rash often known as the butterfly rash which is a classic sign of systemic disease. Malar means on the cheeks but it can also occur on the body. It could be useful to you to know more exactly what sort of skin lupus you have been diagnosed with.
I am sorry you are in so much pain. This certainly needs investigating and suggests the next step should be a rheumatologist especially if the dermy did not ask you about other possible symptoms or do the usual blood tests
These days the oral medicine Plaquenil is usually prescribed from the get go for cutaneous ( skin ) lupus. It is very effective for the skin and is also an important medicine for general disease modification, to help stop the skin problems spreading and new problems developing and it will help with other lupus symptoms such as joint aches and pains and fatigue.
If this was not prescribed, it is reasonable to ask why not.
Please let us know of any additional questions. Reading the ifnormation facts is one thing but getting an experienced and understanding take on it is can be invaluable.
Bye for now
Clare