Scleroderma SSc 12 years & counting

Posted by sclerobarbiie3 @sclerobarbiie3, 5 hours ago

Hi, I've been battling SSc - diffuse systemic scleroderma for 12 years now. I am 34 years old. I also have sjogren's syndrome, Fibromyalgia, Interstitial lung disease (ILD), Hashimoto's thyroiditis -hypothyroidism (underactive thyroid), Arthritis, Raynaud's phenomenon, Gastroesophageal reflux disease (GERD), IBS- Irritable bowel syndrome, Schatzki ring, Small mouth (microstomia), Sclerodactyly-permanent contractures, Arms permanent contractures, Digital Ulcers, Calcinosis Cutis, Pulmonary Arterial Hypertension (PAH), whole body skin involvement- tightening, discoloration (pigmentation changes), seborrheic dermatitis, telangiectasia, Facial Changes, unable to move certain joints (wrists & most fingers), thyroid nodules, heart block, heart arrhythmia, depression and anemia. That covers most, I believe. Medications I take are CellCept, Sulcrafate, Sulindac,
Gabapentin, Baclofen, Duloxetine, Pantoprazole, Famitodine, Sildenafil, docusate sodium, oxygen 2 liters, Indomethacin, oxycodone, and rituximab infusions. OTC- vitamin b12, Tylenol, ibuprofen, probiotic and prebiotic, aspirin low dose. Waiting on a new pulmonologist for medication. I've tried a lot of treatments in my years; unfortunately my case is a difficult one. Loosing my hair; besides everything else. Thinking my heart is starting to have symptoms. Low heart beats with low oxygen upon activity (just walking). Anyone else? Is this heart failure? I would like to know your journey as well. Lotions, cream, bandages, anything that has helped you with our symptoms and battles. The more information to help each other- the better. Thank you.

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