Originally Posted by Starburst

I'm in the UK, so I'm aware things may be different but I really value your input.

I have Rheumatoid Arthritis and autonomic neuropathy which is strongly believed to be caused by my autoimmune disease. I've had RA since mid 2009 and my first concrete sign of 'something else' was in mid 2013. In the last 3 years, I have been diagnosed with; gastroparesis, intestinal dysmotility, orthostatic hypotension and PoTS. I've been having difficulty in emptying my bladder but we are trying to see if it is the impaction causing the issue or if I need further investigation. It has since been suggested that a sensory neuropathy is the cause of some other symptoms I've been having. Each specialist doctor has put me on medication to control various symptoms. However, my rheumatologist and gastroenterologist state that their primary goal is to manage the underlying issue which is most likely my RA. Unfortunately,my here is nothing concrete they can do to prove this, so I have to trust both their expertise. As it happens, my inflammatory markers are elevated and my joints are visibly swollen. Prior to this, I had a good period of time where my disease was well controlled and due to this, I refused to allow them to increase any autoimmune disease specific medication.

I find it difficult to achieve the delicate balance between good disease control and functioning immune system. It seems that every time they increase my immunosuppressive (subcut methotrexate and subcut humira) drugs, I pick up an infection which means a) I end up missing doses while I recover and b) all my symptoms flare because they always do when I've got an infection.

From my time on forums and social media groups, it seems that most people are treated symptomatically. Obviously my doctors are the experts but I feel a bit like we are using a sledgehammer to crack a nut. While I am deeply affected by my symptoms, I am equally anxious about - what feels like - the doctors trying to batter my immune system. As mentioned above, it feels counterproductive due to the side effects. I'm curious as to how others manage their autonomic dysfunction symptoms. Any input would be much appreciated, thank you.