Sounds like you're in considerable discomfort.

Why do they think it's autoimmune? Do you have a positive ANA or other markers? Have any of your blood tests been positive?

There is one thing I found helpful. I have a port and used to get IVIG. It is fairly common to use this for autoimmune neuropathy. I did this for 11 years. I won't say it worked wonders, but I certainly felt better then vs. now. I can longer take it after a severe case of aseptic meningitis (from a rare reaction to the IVIG).

You have a huge load of pain meds on board...many that can be causing the autonomic symptoms you're experiencing. I take numerous meds for my cardiac function (and have a pacemaker also). Midodrine and florinef are common to use for low BP. Beta blockers can help the tachy heart rates. I also take domperidone from Canada (not available in the US) for my gastroparesis.

I would ask your doctor whether you're a candidate for IVIG. It's not an instant cure...takes months of treatment to start seeing results. Also ask whether nerve blocks are an option. Being that I know my DRG is enlarged, I won't do any nerve blocks and risk more inflammation...but it may be worth asking your neuro or a pain mgmt doctor (like an anesthesiologist) in your case.

I would definitely stay away from immune suppressants unless you have identified the AI disease.

Certainly others will come along to give you some ideas on pain control as well.