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Scleroderma Stories about Heartburn/Reflux

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer

Personal Stories of Heartburn/Reflux and Esophageal Problems

These are stories about people who are dealing with heartburn (reflux), gastroesophageal reflux disease (GERD), or other esophageal problems, caused by systemic sclerosis (scleroderma) and related autoimmune diseases. (Also see Scleroderma Gastrointestinal Involvement, What is Scleroderma?, Types of Scleroderma, and Systemic Sclerosis)

Alexandra: Scleroderma My scleroderma symptoms arrived in great style: reflux, itchy swollen skin, joint and muscle pain and tiredness. Plus hundreds of little red spots (telangiectasia). My mouth was tight and getting smaller too…

Amanda: Diffuse Scleroderma Systemic Sclerosis I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007…

Amy: Daughter of Systemic Sclerosis Patient: What is Scleroderma? Imagine for me if you would that in certain areas of your body the skin has begun to thicken and harden…

Annette: Diffuse Scleroderma (Illinois) I can see where having friends who understand what I am going through would be a big help…

Annette G: MCTD, Systemic Scleroderma, Chronic Kidney Disease, CFS, Fibromyalgia, Trigeminal Neuralgia, TMJ People think that because I am a nurse I have all the answers. Well guess what? I don't…

Barb: Diffuse Systemic Scleroderma I was diagnosed in 1985 with systemic scleroderma and Raynaud's. It has affected my esophagus, fingers, toes and bowels, and recently I started having mini strokes…

Beverly: CREST Scleroderma I was overtired and needed naps in the afternoon, pain was slowly getting the better of me and I finally went to the doctor…

Bill T: Diffuse Scleroderma I was diagnosed in July 2008 with Diffuse Scleroderma. I have consistently digressed since then, and have now been in my handicapped recliner, for the most part, since about July 2009…

Chris Beck: In Memory of My Mother, Veta Breit Can someone help me? My hands hurt and get cramped sometimes when they get cold…

Christene: Limited Scleroderma I was diagnosed when I was just nineteen and at that time it was one of the scariest moments of my life…

Danie: CREST Scleroderma My parents always thought of it as an excuse to miss school. It all started with my hands…

Daphne M: Daughter of Limited Systemic Scleroderma Patient She has had symptoms of reflux, which has caused her to throw up every night for over ten years. Her hands turn blue and are very sensitive to hot and cold. She has been developing ulcers on her fingers too. She was admitted to CCU last week with difficulty swallowing and breathing…

D.M. Hoffe: Progressive Systemic Sclerosis (Scleroderma CREST) After an endoscopy it was discovered I had a Watermelon Stomach…

Dee B: Limited Scleroderma/CREST Syndrome I also had the problem with people saying I was a hypochondriac, as at that stage all the doctors I saw found nothing wrong with me, but I constantly felt weary and ill…

Dian H: Diffuse Scleroderma Having to take disability from work is the hardest thing I have ever done. Working at least kept my mind on other things besides the pain…

Easter: Scleroderma My name is Easter, and I'm Iraqi. About 16 years ago I began my struggle with scleroderma…

Elaine L: Scleroderma When I was about 20 years old, I started experiencing stomach problems and my fingers would turn a waxy white and feel so cold…

Elva: Mother of Diffuse Scleroderma Patient My son is unable to put on his own socks and shoes. He is very tired, and has tremendous pain…

Gaynor: Morphea and Possible Systemic Sclerosis I was diagnosed in 2003 with morphea. It began as a bruise-like patch on my upper right arm…

Gazea: Diffuse Scleroderma I would like to at least try to suggest a small ray of hope for other sufferers of diffuse scleroderma…

Gertie: Systemic Scleroderma without Skin Involvement or Raynaud's She looked thoughtful for a moment, then quietly asked "Is there hope?"

Gipi: Raynaud's, Scleroderma (Italy) I'm a fifty-three-year-old woman. When I was 21 my illness began, my fingers turned white and I had pain in my bones…

(Italiano) Gipi: Raynaud's, Sclerodermia Sono una donna di 53 anni. Quando avevo 21 anni ho avuto l'esordio della mia malattia con pallore alle dita delle mani e dolori alle ossa…

Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen…

Heidi: Difficult Diagnosis of UCTD Do these symptoms resemble the beginning symptoms for others who have gone on to be diagnosed with scleroderma?

Helen P: CREST Scleroderma I was diagnosed ten years ago when the symptoms kicked in with a vengeance following a very traumatic personal tragedy…

Iceback: CREST or Limited Scleroderma Never having heard of scleroderma, I never really asked any questions when he told me and went home to look it up on the Internet…

Ingrid: Daughter of CREST and Overlap Patient (Germany) Maybe there is someone who has a similar or the same problem and this person could write to me. The doctors cannot help my father…

(Deutsche) Ingrid: Vater das CREST Sydrom sowie Overlap Syndrom Vielleicht kann mir jemand schreiben der das gleiche…

Janet Q: UTCD or MCTD I also experienced new symptoms; joint pain, muscle aches, headaches, very painful carpal tunnel syndrome in both hands, back and neck pain, the list grew on and on…

Jay: Scleroderma and CREST When I was fifteen or so, I noticed that my fingertips were starting to get very sore…

Jenny: CREST Scleroderma My symptoms started to appear over ten years ago, but I was only recently diagnosed…

Jenny S: Morphea, etc. After a biopsy, I was diagnosed with morphea at age fourteen. A small spot, size of a quarter on my lower back that progressed to the size of two of my hands…

Jerri: CREST Syndrome I was twenty-one years of age when I first noticed that my fingers, toes and lips were turning colors…

Jewell: Diffuse Progressive Systemic Sclerosis When I think back, I had been getting sick for a long time. I just did not know it…

Joanne: Diffuse Scleroderma (Now in memory of Joanne by Lis) My hands became very swollen and I was unable to make a fist…

Jon F: Gastroesophageal Reflux Disease (GERD) I believe my vagus nerve was damaged in some way during the Nissen fundoplication surgery or as a result of it…

Kate: Possible Scleroderma/Lupus Overlap At some point in that dreary winter month, I began waking up with swollen hands…

Kym: Diffuse, CREST Scleroderma, Lupus and Fibromyalgia It all started with Raynaud's in my fingers and toes when I was about nineteen years old, in 1979…

Leeben: Limited Scleroderma and CREST I won't go into how many doctors I had to visit before someone took me seriously; it was a total nightmare…

Marilyn: Diffuse Scleroderma Being that I was a nurse you would think that I should have picked up on this myself…

Marthie D: CREST Scleroderma I live in a small town, which developed around a chemical and petrochemical industry in this area in South Africa…

Mary T: CREST Scleroderma If my rheumatologist does not explain my problems to my satisfaction, I will be looking for another doctor…

Michelle T: Surviving Daughter of Systemic Sclerosis Patient In memory of my mother, who was my best friend, my strength, my drive, and my compassion, I am compelled every day of my life to educate others of this disease…

Moomary: Diffuse Scleroderma The endoscopy showed that my esophagus does not close at all when I swallow. The surgeon suggested that he could do a Nissen Fundoplication…

Peggy: CREST and Raynaud's Years later, at fifty-six, my family doc said he thought I had scleroderma because I was having trouble with my hands, and my fingers looked like sausages…

Queenie: Systemic Sclerosis with Pulmonary Fibrosis (Liverpool) It was only when my mother went onto the internet looking at illnesses that had all the symptoms that I was showing that we found Raynaud's and scleroderma…

Rhonda L: Systemic Scleroderma I have recently been diagnosed with sclerodema, and am still trying to wrap my brain around this…

Robin E: Scleroderma, Lupus and Raynaud's I do not know if I can describe what I am going through because it changes each week, if not each day…

Rosie: Limited Systemic Sclerosis (Australia) Some of my symptoms may not be due to limited scleroderma, however most of these symptoms have appeared since my diagnosis…

Sandy A: CREST Syndrome I have had surgery to remove the calcinosis on my knee and forearm twice, and once on my elbow. Yet it always comes back…

Santo: Sjogren's Syndrome (Italy) I visited gastroenterologist, mouth experts, dentists, ears, nose and throat specialists, and none of them could explain the symptoms…

(Italiano) Santo: Sindrome di Siogren La parte esofagea si è risolta, ma restavano i sintomi alla bocca e poi sono venuti quelli agli occhi (secchezza del dotto oculare)…

SariHope: CREST Scleroderma and Sjogren's Syndrome During the first few years after being diagnosed with Raynaud's, I had to go to the grocery store with gloves on to reach into the frozen freezer…

Sheila Z: Scleroderma I would like to first say that this site has been a great help for me to understand what is happening to my body and my life…

Sibel: Scleroderma and Raynaud's (Turkey) Changes in my skin were making me look different in the mirror…

Star S: Morphea and Systemic Scleroderma I was diagnosed with morphea at age seven. Now at age thirty-three, I have recently developed systemic scleroderma with gastrointestinal manifestations, Sjogren's syndrome, inflammatory arthritis, malabsorption…

Susie: CREST Syndrome I have had CREST syndrome for the past eight years. My specialist is Dr. Frederick Wigley, from Johns Hopkins…

Syl: Systemic Scleroderma/CREST/Pulmonary Hypertension/Sjögren's The physician's assistant noticed that my hands went really blue…

Tami: Morphea Scleroderma I have gotten used to the stares everyone casts my way because in their eyes I am different. Unique, I guess…

Tata P: Diffuse Scleroderma I am thirty-two years old, and I have been suffering this illness since I was nine…

(Español/Spanish) Tata P: Esclerodermia Difusa Hola, tengo 32 años, y padezco esta enfermedad desde los 9…

Tracie S: CREST with Fibromyalgia I ache from head to toe, am cold all the time, feel like I am in a fog, in general I am just not up to par…

Yolima: Diffuse Scleroderma I was misdiagnosed for more than a year with so many diseases and given all types of medication for different problems except for the real disease…

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