Anyone with Systemic Sclerosis or Scleroderma?

I have systemic scleraderma as well. Unfortunately mine is attacking my gastric system. I have watermelon stomach and had 4 gastric bleeds in a 2.5 year period. The last was on February 2025. I don't know much about this disease. I have multiple auto immune diseases including Lupus and Fibromyalgia. Wishing you the absolute best. Feel free to contact me.

@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.

Addressing my extreme and prolonged fatigue. It turned out I had very low iron. Just completed five IV Iron infusions. Feeling a little better. The nurse said it will take a couple of weeks for the effect to kick in. If not enough, may need to continue iron infusions.

@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.

I have not had a stem cell transfusion before. I used to get iron infusions because I was anemic and suffered from severe restless leg syndrome. It was horrible. Now I'm taking 600 mg of Horizant which is an extended release gabapentin. It helps but I still have restless leg problems.

My doctor wants to cut back on my iron meds, because my Ferritin level is 626, but it's making RLS so much worse again.

So from my systemic scleroderma, Lupus, Fibromyalgia, and Reynauds, I am quite a mess. So, so tired too. But if I nap I don't sleep at night.

Wishing you my best!

@grandmal65
Thank you for sharing your story. I feel similar to what you have described. Just FYI from experience with my doctors:
GI bleeds: possible with scleroderma, but not common. May be other causes, like medications or ulcer. Gabapentin is not associated with GI bleeds, but NSAIDs are (acetaminophen, ibuprofen). May be worth taking a look at your medications list and getting a second opinion with gastroenterologist to do endoscopy. This test will show where GI is bleeding and why.
Google search for GI Bleeds and causes: https://www.bing.com/search
Fatigue: vitamin deficiencies can be contributing. Vitamin D, folate, and B12 would be the most common. Blood tests may help.

Will be posting more information.
Wishing you all best!

I keep asking my GI doctor what's going on. I am not allowed to Take NSAIDS. Haven't for years. But I keep getting polyps in my stomach. Not just one or two but multiple. Can't have fried food, spicy, or alcohol. Really sucks. Have had tons of gastric problems for almost 15 years, like daily diarrhea. Except for past 2 years. Something changed. My family has gastric issues.

@grandmal65

Thank you for sharing. Looks like your GI issues have been followed with gastroenterologist. Polyps can bleed, which explains your GI bleeds.

For scleroderma, I follow the same diet - no fried food, no spice, no acid, no high sugar, limited milk products, no caffeine, no alcohol. Mostly soft food, like tuna salad, soft breads, boiled eggs, scrambled eggs, boiled vegetables (cauliflower, broccoli, carrots). Bananas are OK. No raw fruits and vegetables, or mixed salads. No salad dressing. Occasionally, medium well hamburger with no spice is OK. No fries.

Lentils were working well for a while to help with regular stool, but then I started getting nausea post eating even homemade well-cooked lentils, not sure why.
Very limited diet, but it seems like the only solutions.
With scleroderma, esophageal reflux (GERD), dysmotility, GI fibrosis, constipation, and malabsorption are main issues. Proton pump inhibitors are recommended for reflux. Geri-Kot (Senna) and fiber supplements like Metamucil are recommended for constipation. Although, with polyps, it is better to consult your doctor first if those are good treatment options. As they say, every patient is different.

Please keep sharing your scleroderma story. Hoping to get more people to participate.

Wishing you best!

@altabiznet

Update to my autologous Stem Cell Transplant for Systemic Sclerosis or Scleroderma (done at Duke, NC).
Before transplant: 80% of normal functioning with driving and independent living; skin thickening and discolorations; joints stiffness; fatigue; Raynaud's; GI sensitive.

11 months post-transplant: 20% of normal functioning. Persistent issues: fatigue (need caregiver help with cooking cleaning, shopping, driving); vasculitis and Raynaud's; joint stiffness; fluid retention post chemo and steroids; GI sensitive; hypertension and suspected heart failure post chemo. Skin thickening and discolorations got a little better, the only improvement I see so far.
Please share your experience with scleroderma treatments.

@altabiznet

During autologous SCT transplant: Vasculitis and Raynaud's got worse immediately after total body irradiation, transplant, and chemotherapy, accompanied by rapid weight loss. I lost 25 lbs within 4 weeks post-transplant. All of my subcutaneous fat was gone. The skin did not look good for all of my body. No nausea or vomiting post chemo that would contribute to such rapid weight loss.