I do not know the answer to the massage question. On exercise I know a little. I doubt that anyone on this forum was as weak as I was in 2005...completely disabled and quadriplegic with a feeding tube and more complications than I can list. A bag of bones who could only lie on his back. Just opening my eyelids was a major task. If the criteria for physical therapy was that it could not tire me, then I would still be a quadriplegic today. I was exhausted to a cellular level every moment no matter what I did. The most simple physical task would exhaust me. However I opted to try and today I can ski, play golf, etc. Recovery was the most emotionally difficult, exhausting and painful thing I have and hopefully will ever do. And after 40 months I am still working on improving my strength and physical condition.
There are some people whose disabilities prevent them from therapy but most can do it. There are some who have minor disabilities but a chronic rather than severe disease. It is not easy for anyone to rehabilitate. I have worked as a volunteer in a rehab hospital for 2 years (to pay back what they did for me and try to help others recover) and have seen many who are worse than I was. Including some with lupus, myositis, ms, and guillan barre. So difficult but they make the effort and most see progress in time.
I can't give specific medical advice for any individual ( I am not a doctor or therapist) but I can hold myself up as an example of someone who came out of a very deep hole from which no one, not even the doctors and therapists, thought I would emerge. There are studies that show that mild exercise actually reverses inflammatory processes. A friend of mine passed away in January when his illness (dermatomyositis) could not be brought under control. The physiatrists decided after several months of therapy to stop. He was one of the few patients that I have seen who had to stop for reasons other than insurance. Unfortunately, he passed away from complications a month later. But he tried.
There is so much unknown about our diseases and the aspect of recovery and rehabilitation is largely neglected in my opinion. My personal experiece is offered as a counter point to those who believe or are advised there is not much that can be done. I am glad I did not "accept" my disability without a fight.
Just another point of view.
MCTD (lupus, scleroderma, polymyositis). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005. Recovered and now active in skiing, tai, chi, hiking, golf. Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.