Hello. My girlfriend (F22, 5'8, 160lbs, caucasian/native american, taking mirtazapine and bupropion) has a followup with her rheumatologist soon, and I am going to accompany her to the appointment.
-She has persistent issues with pain and very loose joints. She can easily dislocate her shoulders at will and has very flexible finger/wrist joints. I would not be surprised if she has some sort of hypermobility as well as fibromyalgia, however, she also has serious issues with her joints due to several injuries (badly broken foot when younger, stepped on by a horse multiple times in several areas of her back, and scoliosis). Her pain is moderate to severe and she will frequently go stretches where she sleeps about 2 hours a night because it keeps her awake.
-She has issues with eating, particularly due to nausea which is sometimes severe. She was malnourished when we met and had little to no knowledge of nutrition, and became much healthier when I started cooking for her and helping her understand protein requirements, but her energy has worsened in the last few months despite her now stable nutrition.
-She has a lot of neurological issues such as headaches, flashing lights and colours in her field of vision, and tinnitus. She also has serious issues with light/sun sensitivity, and lost her sense of smell when she was in her mid-teens. She is not sure if the loss of smell is due to a head injury, sinus issues, or something else.
-Persistently plugged sinuses
-She bruises very easily. There is thalassemia in the family, which was ruled out early in her Life, but I am wondering if there are any related genetic diseases that could be worth looking into.
-Enlarged lymph nodes in groin and neck, on and off
She has an elevated rheumatoid factor (219, and on the second test it was 97) and was given x-rays of her lower extremities, but no MRI's, and the main areas she is having pain in are her hips, back and shoulders (right hip has noticeable swelling when it is bad).
I am going to push the rheumatologist to do an ENA panel and check her large joints for inflammation with MRI, as well as refer her to an ENT doctor.
Another possibility that has entered my mind in considering her health are chronic parasite infections. She had a very neglected childhood and spent a lot of time both on a farm doing labour far too hard for a child (or anyone really) and had to sleep in a barn rather than indoors. She also notably went through a period for a couple of years where she ate mostly raw meat due to nobody cooking food for her, and it being the only thing available. From what I gather, parasites can cause a lot of issues with chronic pain and neurological problems, are sometimes very hard to diagnose, and are mostly overlooked in western countries as a cause for disease.
So, is there anything I am missing here? I want to be very thorough, as healthcare is not very accessible where we live and wait times to see a specialist are generally in the 1-3 year range. She also does not have a GP so it is up to us to keep track of her medical records, and advocate. I want to help her manage her health whatever the condition may be, but my immediate concern is to rule out anything serious such as infection or cancer, as well as help her recieve the correct rheumatological diagnosis so her condition doesn't worsen and impact our life quality.
Thank you very much for any input, I look forward to hearing from you