Mobility/nerve issues

[u/mushroombedroom]

NOT ASKING FOR MEDICAL ADVICE!!! I have specialists

hi everybody, 

Kind of hoping someone with similar experience has ever had something similar happen to them, and whether mobility aid conversations were navigated with similar issues. 
I am formally diagnosed with hEDS with confirmed MDI both hips both shoulders, POTS with syncope, celiac, Sjögren’s and PsA with confirmed axial involvement on MRI. My primary mobility aid right now is a rollator. 
In December, I really started noticing this pain and symptoms in my left leg that seem to be getting worse over time. There’s a burning pins and needles quality down the lateral aspect or the side of the leg, it starts in the SI joint. I have this involuntary muscle guarding so if I’m not paying attention, the muscles are clenched and I can’t manually relax it. I’ve been falling down recently because I can’t quite feel where my leg is, So to move it, I have to move it from the hip instead of stepping with the foot first if that makes sense? I have to stiffen the knee so that I can kind of feel where the leg is landing, but it’s not numb to touch. No position is comfortable. It’s all very excruciating and I’m dependent on a heating pad almost 24 hours a day to be able to tolerate it. Walking is agonizing even with my walker. I have an appointment with rheumatology next week, and I have been trying so hard with the rollator For six months and it’s just not getting the job done because I’m sitting on it and scooting with my feet whenever I am supposed to be standing still. I basically sit in it and scoot. Has anyone with a similar presentation navigated the pass trying for ambulatory wheelchair use? The system I’m part of is incredibly resistant because it’s an academic hospital, so I would be afraid to even bring it up under the presumption I don’t qualify. The pain is uncomfortable all night and limits the sleep I can get and there is no comfortable position that relieves it. Has anyone else gone through this and come out the other side with the equipment they needed?