@grandmal65

Sorry, to hear about your symptoms. I will share more of my history. My scleroderma started with a little bit of swelling in the fingers 3.5 years ago. Then it started progressing rapidly 2.5 years ago into skin thickening with discolorations and swelling over hands and knees. Occasional esophageal reflux and constipation. Allergy to multiple foods, especially acidic. I also have vasculitis - purple fingers and toes, which is called Raynaud's. Restrictive lung disease on Pulmonary function tests PFTs, but no actual fibrosis in the lungs or other internal organs.
Currently, I am very fatigued: can only do a little bit of walking inside the house (post-transplant). No cooking, cleaning, driving, etc. My docs think it is scleroderma progressing, but I think it is still post-transplant slow recovery. I have scleroderma only for past 2.5 years - may be too fast for progressing to disability?

For how long do you have your scleroderma? What is your level of physical activity? Can you walk a block or two, drive a car, cook, clean, do any work? Do you have Raynaud? Inflammation in the joints and muscles? Do you have swelling to your face and hands? Do you have patches of fibrotic skin on the body either white or purplish in color? Any information may help.

Thank you in advance. Please feel free to ask me questions, as I see multiple doctors.