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Anyone with Systemic Sclerosis or Scleroderma?
Autoimmune Diseases | Last Active: 10 hours ago | Replies (12)Comment receiving replies
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.
Replies to "@grandmal65 Sorry, to hear about your symptoms. I will share more of my history. My scleroderma..."
@altabiznet I was diagnosed with systemic scleraderma during covid. It has mostly been dormant but I do have Raynauds phenomenon and Sjogrens. I have troubke with my digestive system like gastritis once and had polyps that would have turned into bleeding ulcers. I have trouble swallowing sometimes and with the Raynauds my hands and feet stay cold and I have the White red color change with that. Now my fingertips are starting to go numb I thought maybe thats the scleraderma starting up. Im 64 and know the survival rate declines with people over 60. I hope if it comes out that its slow and not aggressive. Good Luck
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@altabiznet After a family reunion about 3.5 years ago I had my first stomach bleed. The Urologist found I have watermelon stomach which also goes by GAVE. My Rheumatologist did more testing when she found out and said I have systemic scleraderma. I have had Fibromyalgia for 20 years then diagnosed with Lupus and Reynauds 2 years later. I just keep getting these wonderful autoimmune symptoms.
I have actually had my 4th stomach bleed in February 2025. My first was June 2022.
My Reynauds is really attacking my feet and hands. They are so cold and painful at times. But I also do not like wearing socks or gloves all the time because after short periods the nerves make the feel of anything touching my skin almost painful.
I am always tired. I am able to drive most times but only around town. Even a trip an hour or so away is very hard.
Concentration is horrible. The loss of words or names or even staying in the correct thread of thought sucks at times. Frustrating! Just turned 60 in September. But I keep having more and more problems with my health.
I pray for good days and most are. It's just the bad are really bad.
Sorry it took me so long to answer. Lots of holiday stuff plus all the dang doctor appointments.
Hope your holiday was good. Get back when you can. Will talk soon.