i had been through your problems.. lets discuss them one by one
Do you take hydroxychloroquine
regularly? if not start it ASAP.
Get some NSAIDS like ibuprofens, flurbiprofens, piroxicams etc and as you mentioned coca cola color of the urine i advise some Renal function tests with 24 hours urinary proteins to see the range of proteinuria
plus fasting lipid profile
to see how your lipid profile is, meanwhile all this i will recommend some short term use of steroids
to alleviate the symptoms.
if above mentioned drugs doesnt help which i am sure they will we can proceed one step further with immunosuppressants like azathioprine
, mycophenolate mofitil but not now.
now lets come to diet and activities. if you are stressed , relieve it. if you have some other infection of illness address to it before it gewts worsoned always. I would strongly recommend sun exposure avoidance as much as possible..use sun screen and protective clothes to prevent rashes and photosensitivity
. You didnot mention your age or sex , if you are woman i might suspect APLS .
Now your lungs so i must say lungs and hearts are the victims of proteins loss and renal disturbance , so you need to care for the renal health.. stop ssmoking, stop salt in the diet ( i suspect hypertension
too) as salt increases the pace of morbidity, reduce salt intake to minimum possible, use a good balanced diet average proteins intake, too much will also be not good. if you are a woman and plan to have a baby stop with the plans,
And dont forget to take the ACe inhibitors even if you are not hypertensive as it will help your kidney survive longer..
Now coming to the only complain you want to get rid of, PAIN. well the drugs above NSAIDS hydroxychloroquine and short term use of prednisones and all the precautions we talked about..
Good Luck with your disease... if you need more details we can talk you have my cell number on my profile
Have good day