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Raynaud's: Patient and Caregiver Stories

Raynaud's can occur by itself or in conjunction with Autoimmune Diseases, such as scleroderma. It is often the first symptom of scleroderma, beginning months or even years before other symptoms.

Alda: Raynaud's Syndrome (Italy) Fortunately I am going through menopause and I am having hot flashes. But in between hot flashes I feel like I'll die from the cold…

(Italiano) Alda: Sindrome di Raynaud (Italia) Per fortuma che vivo il periodo della menopausa ed ho anche le vampate. Ma tra una vampata e l'altra muoio di freddo…

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…

Allen's Mom: Son has Scleroderma With his tightness of skin he has a very hard time bending, walking up the stairs and for the most part he cannot walk for more than a few minutes without his legs giving out…

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…

Andi P: UCTD and Possible Scleroderma It is believed that I do have an autoimmune disease they are not sure if it is systemic or not, but I know what I live through on a daily basis…

Angel G: Systemic Scleroderma with Raynaud's Phenomenon I noticed that the middle finger on my right hand had turned so dark in color that it was practically black and I actually thought there was ink on it and tried to wash it off. Oh, if only the remedy had been so easy…

Anita A: Sister of Systemic Scleroderma Patient She has had a heart transplant and a kidney transplant. It has been amazing to our family the courage and stamina that she has through all that she has endured…

Andrea: Girlfriend with Raynaud's Syndrome (Italy) It started a few months ago when my girlfriend started finding strange spots on her hands when it was cold, they would turn purple…

(Italiano) Andrea: Fenomeno di Raynaud Acutissimo Da alcuni mesi alla mia ragazza sono comparse sulle mani delle strane macchie che nei periodi di maggior freddo…

Andy Markman: Systemic Sclerosis I am a forty-two-year-old male. I have had scleroderma for two and a half years. It was first diagnosed as an "atypical phenomena"…

Angela K: Limited Cutaneous Scleroderma I was told I had limited cutaneous scleroderma with Raynaud's phenomenon six years ago…

(Dutch) Angélique: Dochter van een Sclerodermie Patient (CREST) Mijn moeder heeft het crest-syndroom. Is 64 jaar en heeft sinds de diagnose 7 maanden in het ziekenhuis gelegen vanwege allerlei complicaties…

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…

Archie Bailey: Scleroderma: Sue's Story Time has passed since Sue's death. Only those who have experienced the grieving process can understand…

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…

Barbs: Systemic Sclerosis, CREST, Raynaud's So from the outset, diagnosis took twenty years…

Betty M: CREST Syndrome I was in so much pain for so long that I tried to take my own life. This only ended me up in a mental institution where I was given shock treatments that wiped out my whole memory…

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…

Billy N: CREST/Scleroderma and Raynaud's I am a private person and prefer to keep it that way, but the public needs to know that too many 'Invisible Americans' are being treated poorly…

Birilla: CREST and Bilateral Thoracic Outlet Syndrome It all began in 1998, I was thirty-two years old. Two of my fingers turned white…

(Italiano) Birilla: CREST, Sindrome dello Stretto Toracico Bilaterale Tutto è cominciato nel 1998, allora avevo 32 anni. Mi sono comparse due dita bianche…

Bobbie Thrasher: Scleroderma I may write a book about my childhood since I am blessed to use my fingers once again…

Bren: CREST Scleroderma I had three ulcers on my hands from Raynaud's. I had Botox injections for them, and by the next day they were gone…

Brenda: Limited Scleroderma, CREST, Raynaud's I was sick for five or six years, telling doctors how much pain I was in…

Carol C: CREST Syndrome Scleroderma and Raynaud's have not robbed me of a fulfilling career…

Carol Langenfeld: Diffuse Scleroderma People tell me that I have earned my credentials as a "certified patient" the hard way…

Chris D: Systemic Scleroderma About eighteen months ago my entire body began going haywire…

Christina N: CREST Scleroderma My daily life is a strain on my family, but they never complain. Not once have they moaned to me about the changes we have had to make…

Clod: Raynaud's Syndrome (Italy) Since I was thirteen I have always suffered from the cold, so much so that my hands and my feet became purple in the true sense of the word, afterwards white and later red…

(Italiano) Clod: Syndrome Raynaud (Italia) Dall'etá di tredici anni ho sempre sofferto il freddo a tal punto che mani e piedi diventavano viola nel vero senso della parola, poi bianche e infine rosse…

Circadiano: Limited Scleroderma with Raynaud's in One Finger (Italy) About ten years ago she was diagnosed with lupus…

Claudia: Systemic Scleroderma Nature is wise, no doubt about it, when something is wrong with our body we have to pay attention…

Craig R: CREST Scleroderma I had my first scleroderma symptoms at age twenty-two, which included severe Raynaud's with some ulceration and tissue loss…

Crissie: Surviving Sister of Scleroderma Patient Seek out a doctor who specializes in this disease as soon as you know you have it…

Daphne: Daughter of Scleroderma/Polymyositis/Antisynthetase Syndrome Overlap Patient By early 2005, she began to exhibit Raynaud's phenomenon. She was also having swelling in her face, hands and feet…

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…

David B: Raynaud's I am fifty-one years old and suffer with Raynaud's, bipolar affective disorder, high anxiety and phobias for which I am unable to take medication…

Dave S: Undiagnosed and Brother of Scleroderma Patient A small black spot appeared on my left index finger around Easter of 2004. It has not grown in the past six months, but it also has not healed…

Dave Wilcher: Diffuse Scleroderma Early in 1998, I noticed my hands were swollen. I had a hard time gripping the handle of my coffee cup…

Dawn: Confirmed Early Scleroderma I am awaiting surgery for a rotator cuff injury. I now understand this might be a symptom of my scleroderma…

Dawn M: Linear/Systemic Scleroderma My family and I were informed by the doctors, that the localized/linear form of scleroderma that I was diagnosed with, would never progress into the potentially fatal, systemic form…

Dawn S: CREST Syndrome The majority of doctors that I have seen have been unhelpful, unsympathetic and downright rude to me…

Dawna: Raynaud's with CREST? I am in my mid forties and was diagnosed with Raynaud's when I was about twenty-two…

Debbie: CREST Here's a copy of a letter I sent to my rheumatologist…

Debby: CREST Scleroderma It was then everything added up— that I did not have several different conditions, but rather they were all part of the CREST…

Deborah Peck: Diffuse Systemic Sclerosis I first noticed my hands turning white in 1992 after my father's funeral…

Debs B: Diffuse Systemic Sclerosis (England) This seems to be a long list of ailments that I have been coping with for years, so the addition of diffuse systemic sclerosis did not really panic me…

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…

Denise: Systemic Sclerosis, CREST and Raynaud's It all started when I was sixteen years old. I was having awful pains in my hands and feet…

Denise E: Diffuse Scleroderma I was first diagnosed with diffuse scleroderma in February 2002, but my symptoms began subtly in the summer of 2000…

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…

Dienne: Morphea plus possible CREST I finally saw a rheumatologist about six years ago, who told me I had Raynaud's and Telangiectasia (spider veins)…

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…

Dodo: Limited Systemic Scleroderma (Italy) The tips of my fingers turned cold, and then became cyanotic, always hurt and in the end they became ulcerated…

(Italiano) Dodo: Sclerodermia Sistemica Limitata (Italia) Ho iniziato ad avere alcune punte delle dita delle mani molto fredde, che in pochi giorni diventarono prima cianotiche, sempre piú doloranti e infine presentarono delle ulcere…

Doni: CREST Syndrome The doctors were always interested like, "Wow look at this," but since I had no insurance, they would not touch me…

Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998…

Donna C: Undifferentiated Connective Tissue Disease (UCTD) For the most part I have still been doing very good. Some little setbacks here and there but for the most part much better…

Donna H: CREST, Autoimmune Hepatitis, Fibromyalgia I also have degenerative disc disease, osteoarthritis, anxiety/depression/panic disorder, irritable bowel…

Donna M: CREST Scleroderma It all started with an infection at the end of my index finger in December 1999. My finger became red, inflamed and sore to touch…

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

Eli: Sclerodermia and Raynaud's Syndrome (Italy) After thirteen years of suffering, he has given me a diagnosis and a cure, before it is too late, I hope…

(Italiano) Eli: Sclerodermia e Sindrome di Raynaud (Italia) Finalmente dopo 13 anni di sofferenza ho diritto anche io a una diagnosi e una cura,prima che sia troppo tardi. Spero…

Erica R: Raynaud's Syndrome & Telangiectasia I noticed that in the middle of class my hands would go numb. I had to run out to my truck to turn on the heat…

(Italiano) Ely: Sindrome di Raynaud Due anni fa ho incontrato una ragazza con il mio stesso problema…

(Italiano) Emy: Sindrome di Raynaud Li quale mi ha diagnosticato la sindrome di Raynaud, connettivite da definire nel tempo e polialtrite…

Gabriela: Diffused Scleroderma Mi chiamo Gabriela, ho 17 anni ed abito a Londra. Mi hanno diagnosticato la Sclerodermia ed il fenomeno di Raynaud quando avevo 15 anni…

Gayle: Deaf with Limited Systemic Scleroderma (CREST) I am looking for another deaf person, female or male, with scleroderma to talk, share, write, e-mail to communicate with…

Gianfry: Systemic Sclerosis (Italy) One day in February I felt that there was no flow of blood to my index finger, and it turned rather pale…

(Italiano) Gianfry: Sclerosi Sistemica (Italia) Un giorno di febbraio mi sono sentito un non ritorno di sangue all'indice che assumeva un colore piuttosto pallido…

Gioia: Systemic Progressive Sclerosis (Italy) I was unable to swallow food, and a few times I was at risk of suffocating, and I also had terrible ulcers in my hands…

(Italiano) Gioia: Sclerosi Sistemica Progressiva (Italia) Poi però mi sono resa conto a mie spese che non era così, non riuscivo più a deglutire il cibo, più di qualche volta ho rischiato di soffocarmi, per non parlare delle ulcere alle mani…

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…

Gordon: Undiagnosed and Raynaud's I am a forty-year-old male and I am quite certain I have scleroderma even though I have not yet been diagnosed…

Hailee Vale: MCTD but Now Undiagnosed I still do not have any proper answers. I have my own theories as to what went wrong and I am waiting to see a rheumatologist…

Heb: Scleroderma I am thirty-one and newly diagnosed. I am still trying to figure it all out…

Helen: Raynaud's Do I have scleroderma? Does it make a difference if you catch it early…

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

Hilde: Scleroderma, Lupus, Raynaud's I was diagnosed with lupus, scleroderma and Raynaud's in 1997. I have been through hell and back several times…

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…

Iko H: Limited Systemic Sclerosis (Belgium) I am fifty-one years old and in May 2011 my diagnosis of scleroderma was confirmed. I am studying for horse veterinarian and am in my last year…

Isabo: Raynaud's and Systemic Sclerosis (Italy) About a year ago I got diagnosed with Raynaud's, since the tip of my fingers had withered…

(Italiano) Isabo: Fenomeno di Raynaud e Sclerosi Sistemica (Italia) Circa 1 anni fa mi hanno riscontrato il Fenomeno di Raynaud in quanto mi erano marcite non completamente le estremita delle dita…

Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure…

Jackie S: Overlap Syndrome For as long as I can remember I have had terribly dry skin and a very hoarse voice with dry mouth…

Jacquie: Diffuse Scleroderma I am fifty-six years old and I was diagnosed with systemic scleroderma in November of 2003, right when menopause hit…

Jamie: Surviving Spouse of Progressive Systemic Sclerosis Patient My husband Jerry, age 35, was diagnosed with scleroderma in January 2000…

Janet: Mixed Connective Tissue Disease I have just been diagnosed with Mixed Connective Tissue Disease (MCTD), lung fibrosis, Raynaud's and sicca (dryness) symptoms…

Janice E: CREST/Fibromyalgia At some point I came to the realization that what I was feeling just could not be normal. By this time my hands were swelling…

Jason: Linear Scleroderma I have recently been diagnosed with Raynaud's as well, have had gastrointestinal difficulties more common to systemic forms, and have witnessed these lesions grow and deepen rather than decrease in size…

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…

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…

Jill: CREST Scleroderma and Sjögren's I could not face being in or visiting a hospital so I discharged myself from his care. I decided that I have lived with it this long so will simply get on with it again…

Joan B: Scleroderma and Raynaud's One day in 2000, I was raking leaves and my hands were really cold. I went into the house in pain and my hands looked like I had frostbite…

Joan Elston: Systemic Scleroderma, Sjögren's, and Fibromyalgia I am sixty-one years of age and live with my husband Bryan in Durban South Africa…

Joan Stovall: Scleroderma (Dallas, Texas) I may have scleroderma, but it does not have me…

Joanne: Diffuse Scleroderma My hands became very swollen and I was unable to make a fist…

Jo H: Systemic Sclerosis I am eagerly awaiting an appointment with Dr. Korn at Boston University in a few weeks…

John G: Raynaud's If I walk out to the mailbox across the front lawn for just a few seconds, my hands turn a greenish white color and become numb…

Jonty: Son of Scleroderma Patient (Hyderabad, India) In 1997, I secured a seat in a medical college in Hyderabad and enrolled for the MBBS degree course. I then took my mother to meet Dr. Narasimhalu…

Joy W: CREST Scleroderma Two months after my fortieth birthday, I was diagnosed with CREST scleroderma with Raynaud's…

Judith F: CREST Scleroderma Having all this information about my condition is helpful but also a bit daunting…

Judy R. Thompson Devlin: Diffuse Scleroderma with CREST He said 1 in 200 people get a disease in their lifetime, and that scleroderma was like having 20-30 diseases at once…

Judy King: CREST Syndrome A neurosurgeon performed a Digital Sympathectomy on my right hand and, thank God, my finger was saved…

Jules: CREST She has left me with no answers or expectations and I'm afraid my obsession will only aggravate my symptoms…

Julie T: Surviving Daughter of a Diffuse Scleroderma Patient Our family deals with most difficult situations with laughter and humor, even in the most trying times…

Karen G: Spouse of Scleroderma Patient My husband has scleroderma and we would like to know if anyone has ever had an Iloprost infusion…

Karen M.R.: Diffuse Scleroderma and Fibromyalgia I was so glad she was there, because I sort of went into shock when the doctor said she was going to start me on chemo treatments…

Karligash: Systemic Scleroderma (Republic of Kazakhstan) Young, beautiful, full of hope and expectations for my life, for happiness and love — that was me, nineteen years of age…

(Russian) Карлыгаш: системная склеродермия (Республика Казахстан) Молодая,красивая,полная ожидания от жизни счастья,любви такая я была в 19 лет…

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

Kath: Systemic Sclerosis (Scleroderma) Moving to Spain has had a positive effect on my Raynaud's, but has had no effect, so far as I am aware, on my scleroderma…

Katia C: Sister of a Scleroderma Patient (Italy) She is in the acute phase of the illness, and she has a hardened skin, third degree, that has affected her hands, arms, chest and legs…

(Italiano) Katia: Fenomeno di Raynaud con Sclerodermia Diffusa (Italia) In conseguenza ha una crisi renale sclerodermica che gli ha alzato la presione e gli ha provocato una ischemia…

Kathy Baker: CREST Scleroderma (Houston, Texas) This disease has been a roller coaster ride both emotionally and physically, but I know it could be worse…

Kathi: Scleroderma/Lupus I am forty-three years old and have not been feeling well for ten years…

Kathy M: CREST (Limited Systemic Scleroderma) If you do not have the right doctor, do not get furious, move on…

Kellie: Overlap Scleroderma and Mixed Connective Tissue Disease (MCTD) I am so relieved to read about so many people who have had the same experiences…

Kelly: CREST (Limited Cutaneous Systemic Sclerosis) At first, the rheumatologist hinted that he felt my primary care physician was overreacting…

Keua: Possibly Scleroderma I finally decided to see my doctor when I could not even straighten my fingers without pain and discomfort and was feeling extremely lethargic…

Kevin: Undiagnosed Scleroderma, Lupus, Mixed Connective Tissue Disease, Rheumatoid Arthritis, etc.? All I do is live, sleep and breathe the pain in my hand…

Krissy: Systemic Scleroderma/Stem Cell Transplant Patient Our home is like a hospital. We have oxygen tanks for when I need extra help breathing, and a lovely kangaroo pump which is how I get my continuous feeding…

Kristen: CREST Scleroderma I thought I was going crazy. I did not know whether to cry over the diagnosis or feel relieved that I was not crazy…

Kristi U: Systemic Scleroderma We sold our motel business because it hurt me so bad to work each and every day…

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…

LadyBugDi: Acrocyanosis (now Raynaud's) I was tired of going to the doctor and being told it was from stress…

Laira: MCTD, Scleroderma, SLE, Lupus, CREST, Lymphoma I was just seventeen when I was told I had rheumatoid arthritis…

Laura W: Scleroderma, Sjögren's, Raynaud's and IBS I am glad to finally have an answer after years of tests, with no results…

Laurie (Bioteach): CREST Syndrome My first symptoms of this disorder began with Raynaud's when I was in my mid twenties…

Lenor: Polymyositis, Pulmonary Fibrosis and Raynaud's Phenomenon In May of 1999, I was diagnosed with polymyositis and Raynaud's phenomenon then, in March of 2001, with pulmonary fibrosis…

Leslie R: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers…

Linda F: CREST Scleroderma, Rheumatoid Arthritis, Fibromyalgia, Hashimoto's Thyroiditis, Hematoma, and Osteomyelitis I need to tell you all the gory details so you can truly understand what a miracle it is that I am alive today…

Lindsey: Eosinophilic Fasciitis (EF) My skin remains very thick and constricted…

Lisa C: Limited Scleroderma My mother has rheumatoid arthritis (RA) and my thirteen-year-old daughter has what is believed to be early lupus…

Lisa P: Undifferentiated Connective Tissue Disease (UCTD) I have an appointment with a new rheumatologist on May tenth. Hopefully I will get some answers…

Lisa V: Diffuse Scleroderma and Raynaud's When I first got sick, I thought I was dying. My fingers started hurting really bad…

Lois: Fibromyalgia with Possible CREST When I read Carla's story it almost sounded like mine! When I was in tenth grade, Raynaud's started and a horrible kind of rash…

Lorrie: Limited Scleroderma/CREST At first I thought, "Oh my goodness! I am going to die." But my doctor assured me that I could very likely live to be an old woman…

Lyn: Systemic Sclerosis I thought my life was ending and that I would never have that little girl I always wanted. I was wrong. I did make it through somehow…

Lynn F: Raynaud's and Scleroderma So on November 11th my finger was amputated just above the top knuckle. Unfortunately, an infection set in…

Lynsey: Daughter of Patient with Scleroderma and Lupus My mother has had all but four fingers amputated, all of her toes on her left foot and her right leg up to her knee has been amputated…

Marko: Raynaud's and CREST Scleroderma (Canada) It began when I started to get extremely painful fingers and feet while playing hockey so I went to see a local dermatologist…

Mani: Son of Systemic Scleroderma Patient (Hyderabad, India) My mother was always complaining of breathlessness, slight fever, and nails and fingers turning blue when exposed to cold air…

(Italiano) Mari: Sindrome di Raynaud e Sclerodattilia Circa quattro mesi fa ho avuto i primi sintomi, addormentamento delle dita con successivo formicolio, gonfiore alle mani…

Maria: Scleroderma and Raynaud's (Ukraine) I live in a small town and in a poor country. My doctors have no computers or medical magazines…

Mariam: CREST I am feeling very low at the moment as after seven years of dealing with all the changes, and trying to carry on as normal, I feel like I have lost…

Marie: CREST About eight years ago, I noticed my fingers were going numb, turning white, while grocery shopping…

Marie F: Scleroderma and Raynaud's I realized that either I get up and walk, move, quit smoking and take care of my body or suffer more…

Mariposa: Progressive Systemic Sclerosis I have finger ulcers, also a second degree esophagitis, but I should say that about a year ago it started receding thanks to the doctors that follow my case…

Mark: Systemic Scleroderma It wasn't until 2003 when I finally saw a doctor. They told me I had scleroderma and that I would live maybe five years…

Marla: Difficult Diagnosis and Anxiety I have never been diagnosed with Raynaud's but one of my toes turns white sometimes…

Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success…

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…

Melanie V: Scleroderma and CREST I spend so much time trying to find the point of continuing to study to be a geologist when I cannot go out into the field because of the Raynaud's…

Melissa: CREST Plus I would love to hear from anyone who knows about CREST…

Merrie: Mother of Daughter with Raynaud's and Fibromyalgia? They said it might mean something or not and referred her to a rheumatologist, but he just blew it off as nothing…

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…

Missie R: Mixed Connective Tissue Disease I finally asked for an ANA test to check for lupus. My family doctor hesitated because my symptoms were all over the board…

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…

Myrianisa: Daughter of a Severe Scleroderma Patient My mother was diagnosed with scleroderma six years ago. At the same time, she was also diagnosed with lupus, Raynaud's, MCTD, pulmonary fibrosis and fibromyalgia…

Nancy H: Raynaud's I also have the beginning stages of Crohn's, panniculitis, rheumatoid arthritis, and now Raynaud's…

Naomi: Systemic Sclerosis and Pulmonary Fibrosis My doctor is astonished of my attitude considering I have Raynaud's, my fingers are curling up and I have lost my nails, pulmonary fibrosis…

Natasha Lubin: Scleroderma Meets Sjögren's I started this page so I can keep finding connections between all of our diseases…

Naye: Systemic Scleroderma I was looking in the mirror one morning when I noticed a pink discoloration around my nose…

Neelam: Systemic Sclerosis (India) In December 1998 my right pointer finger started becoming blue and was hurting a lot…

Nettie: Systemic Scleroderma with CREST Up until now I have done very well at pretending not to be ill…

Nico: Daughter of Patient with Raynaud's Syndrome and Systemic Scleroderma (Italy) My mother was twenty-nine years old (now she is almost sixty one) when she discovered she was affected by Raynaud's Syndrome…

(Italiano) Nico: Sindrome di Raynaud e Sclerodermia Mia madre aveva 29 anni (ora ne ha quasi 61) quando scoprì di essere affetta dalla Sindrome di Raynaud…

Nina: Fibromyalgia, Raynaud's, Limited Scleroderma/CREST That is when I found ISN! The volume of reliable, informative, trusted information that I found on this site completely overwhelmed me…

Olga: Difficult Diagnosis Recently I came across sclero.org while researching my illness that has not been recognized neither in my native country nor in Italy, where I moved twelve years ago to escape from cold winters which have destroyed my skin…

Pam: Systemic Scleroderma for 27 Years (Australia) I have had several amputations…

Pam M: Diffuse Scleroderma, CREST and Raynaud's I went to a rheumatologist and after she had almost killed me with all the tests and drugs for a year, she threw her hands up and said there was nothing else she could do…

Papa V: Lupus, Antiphospholipid Syndrome, Myasthenia Gravis, and Scleroderma About thirty years passed, and then—BAM !—I got a heart blockage, stroke, liver biopsy due to elevated enzymes, skin rash, high blood pressure, very high ANA..

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…

Penelope: CREST Scleroderma (Italy) I was tired, my joints ached, and my hands turned different colors…

(Italiano) Penelope: Sclerodermia CREST (Italia) Stanchezza,dolori alle articolazioni e variazioni di colore alle mani…

Peter: Burn Survivor with Scleroderma My left hand had contracted so much that I had to wear a protective piece of plastic on my palm to prevent my fingernails growing through the skin…

Pushpa: Scleroderma with Raynaud's (Bangalore, India) Around my 21st winter, the year of 1982 in Calcutta, India, is when I first noticed my nails and fingers were turning blue when exposed to the cold…

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…

Rafvis: Systemic Scleroderma (Italy) There were practically times when I had no sense of touch…

Rebecca: CREST, Fibromyalgia, Sjogren's and Pulmonary Hypertension My finger has gangrene and the hand specialist says it needs to look like a mushroom before they will amputate…

Renae B: CREST, Sjögren's, Raynaud's I was diagnosed with scleroderma about four years ago at the University of Iowa Hospitals in Iowa City, Iowa…

R.G.: Raynaud's and chilblains Within just a few minutes of vigorous swimming all of the chilblains had disappeared…

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…

Robin T: CREST Syndrome My hands were always cold and turning white, purple then red then back to normal, and hurting. Then I developed a sore on my finger tip that wouldn't go away…

Rose: Diffuse Scleroderma The decision to amputate was made, and the pain that kept me up in tears all night, every night was finally gone…

Rosemary F: Surviving Daughter of Diffuse Scleroderma Patient She tried to explain it, but it was hard for me to comprehend the disease's symptoms. Mom said that it was the same thing that her oldest sister died from…

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…

Rouge: Limited Systemic Sclerosis (Italy) I am thirty-five years old, and up to two years ago I thought I was only suffering from Raynaud's Phenomenon…

Sandie: CREST with Raynaud's I consider myself very lucky to have received my CREST diagnosis at an early stage…

Sandy: Diffuse Scleroderma After years of complaining about various symptoms to doctors, I was diagnosed with Diffuse Scleroderma in 1993…

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…

Sandy J: CREST Scleroderma I have had an ileostomy for two years and a feeding peg for just over one year, and would appreciate comments from any person who also has one or both of these problems…

Santolupo: Diffuse Scleroderma (Italy) In the exams her illness appears to be halted, but about a month ago she started having stomach problems…

(Italiano) Santolupo: Sclerodermia Diffusa (Italia) Da 1 mesetto a problemi allo stomaco non ci capiamo piú niente, siamo tutti male per questa cosa, non viviamo piú tranquili…

Sara P: CREST Syndrome In the winter of 1997, my fingers and toes started turning white and numb in response to the cold weather…

Sarah B: CREST Scleroderma I lost the tips of my baby finger and thumb. The other three fingers do not look too pretty, either…

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…

Sbirulino: Limited Systemic Sclerosis, First Stage Biliary Cirrhosis (Italy) They diagnosed Raynaud's Syndrome, until there was amputation of the first and second phalanges, which caused total invalidism…

(Italiano) Sbirulino: Sclerosi Sistemica variante Limitata, Cirrosi Biliare Primitiva (Italia) Mi avevano diagnosticato la sindrome di Reynaud, fino all'autoamputazione delle Ie e IIe falangi arrivando a portarmi ad una invalidità totale del 100%…

Seema: Progressive Systemic Sclerosis (India) Finally I came to know about Dr. V.R. Joshi, an internist who specialized in rheumatic diseases…

Serena: MCTD/Diffuse with CREST During her twenty years from onset to diagnosis, her Calcinosis was diagnosed as fungus…

Sharon: CREST with Limited Scleroderma, Sjögren's and Pulmonary Hypertension (Australia) Day by day I discover another food I cannot eat…

Sheila: CREST with Limited Scleroderma I felt really scared, confused, and dehumanized in the process of my diagnosis…

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…

Sherry: Fibromyalgia, Hypothyroidism and Raynaud's He said Fibromyalgia is just pain, and if I could not handle my job, I should quit…

Shirley: Progressive Systemic Sclerosis Difficulty swallowing was the thing which got my doctor's attention…

Shirley Wright: Limited Scleroderma I have had this disease for over twenty years now and I plan on being around a lot longer…

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

Silezia: Mixed Connective Tissue Disease (South Africa) I believe that if we try to feel positive about our life and the cards we are dealt, then we can manage our disease most effectively…

Simo S: Raynaud's Hello, I am a twenty nine-year-old girl who was diagnosed with Raynaud's about ten years ago…

Soose: Limited Scleroderma I may have had scleroderma for the last year and a half or two years and did not know it…

Sparky: Diffuse Scleroderma My pulmonary disease worsened only slightly over the past year. I now face the decision to take cyclophosphamide…

Stefan: Progressive Systemic Sclerosis I have been moving towards this diagnosis beginning in 1987 with a heart failure resulting from cardimyopathy…

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…

Stephanie D: Scleroderma/Heparin-Induced Thrombocytopenia If I receive heparin again I will certainly die…

Steve D: Diffuse Scleroderma (England) My symptoms started in 1993, when I noticed my fingers would start to get cold even though it was summer and the temperatures were mild…

Sue D: Diffuse Scleroderma Pain developed in my hands, then I noticed pain in my knees, then my shoulders, down my back, elbows, hips, feet…

Sujatha: Diffuse Systemic Sclerosis (Bangalore, India) I am thirty-six years old and hail from Bangalore in the Southern State of Karnataka in India…

Susan L: Diffuse Scleroderma I first noticed the swelling in my hands and feet shortly after my daughter was born in 2005, and thought that it was post-pregnancy fluid…

Susan M: CREST, Raynaud's and Hashimoto's (Canada) I have a fabulous doctor now and she has brought me from a very dark place to one where I can again see the sunshine.

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

Susie L: Raynaud's (and Scleroderma, too?) I have been told that I "probably" have scleroderma in the early stages by one doctor, that it is unlikely by another, and that I almost certainly do have it by yet another…

Syl: SD/CREST/PH/Sjögren's The physician's assistant noticed that my hands went really blue…

Tara: Systemic Scleroderma I was diagnosed with scleroderma in January 2000, but I have had it since April 1997…

Teresa: Scleroderma I was just diagnosed a few hours ago. Tears are streaming down my face…

Theon: Scleroderma and Pneumothorax This is very hard for me, because I was a very active woman, and then suddenly I am totally and completely disabled…

Theresa C: CREST/Limited Scleroderma I am fifty years old and I was diagnosed with CREST in September of 1996…

Tommi: Diffuse Scleroderma I would like to talk with others who have heart involvement…

Tony B: Systemic Scleroderma with Pulmonary Fibrosis, Pulmonary Hypertension and Raynaud's It has taken me some time to come to terms with this disease…

Tracy: Undiagnosed Please share your story with me. I am really tired of waiting and wondering…

Tui: Limited Systemic Scleroderma I am wondering whether such treatments will be ongoing?

Yvette: Undifferentiated Connective Tissue Disease (UCTD) and Thyroid Cancer For now, I have accepted that the diagnosis of my core problem is not important. The way I choose to deal with it is…

Weesie: Crest/Raynaud's I have come to feel that I am am easy pickings for the majority of physicians since they know that there is no cure…

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…

Yuri: CREST Syndrome Now, one month before my nineteenth birthday, I live with CREST Syndrome, rheumatoid arthritis, acid reflux and anemia…

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