I Have Crest Syndrome

A CREST Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with CREST Syndrome. You're not alone. 127 People

    I Feel Your Frustrations

    I have been suffering with this illness for about 20 years now.  It started with the Reynauds and then other symptoms have kicked in.  I too am tired, fatigued and feel like my energy level just trying to do things I used to has decreased.  I have a wonderful general...
    Mschief75 Mschief75
    2 Responses Dec 30, 2011

    Crest No Not The Toothpaste!

    I was diagnosed a few years back. When I was first told, I took it very lightly. Symptoms were not that bad. I figured hey I can deal. I was stupid and had a chip on my shoulder a mile long. I kept thinking this will pass. After all I'm indestructable. Now looking back, I...
    Hugapug3585 Hugapug3585
    Sep 24, 2012

    Long Time With Crest, Some Problems Now.

    I was diagnosed with CREST syndrome about 20 years ago, and haven't had any serious problems coping with this diagnosis.  My question is about the callous like sores I'm starting to get on my finger tips.  The one on my thumb is quite deep and it can be uncomfortable.  I've...
    PamelaW PamelaW
    2 Responses May 23, 2011

    Finally My Doctor Believes Me......

    I've never been so glad to have painful bleeding sores on my hands that won't heal. Finally my Doctor belives me.....I am a wife of sixteen years and a mommie of five children a 15 year old girl, and four boys ranging from 13 down to one. The pain started at the end of my last...
    Jessicamomoffive Jessicamomoffive
    2 Responses Jan 27, 2012

    Crest - How Do You Deal With It?

    Hi, I am 40, female and married with a 5 year old son and a 2 year old daughter and have just been diagnosed with CREST and Hypothyroidism.  I am undergoing tests for heart and lungs and have had a number of blood tests. I will return for my results in December 2009...
    jay10 jay10
    36-40, F
    14 Responses Oct 7, 2009

    I was recently diagnosed with crest disease.

    The rheumatologist prescribed medication for the osteoarthritis. He indicated I had probably had this for a long time.
    genevacoffey genevacoffey
    66-70, F
    May 6, 2014

    I Have Crest And I'm Working It Out

    Hi I'm 19 I was officially diagnosed with Crest Syndrome when I was 17 but have been under medical investigation since I was 15 or 16. It started with 1 calcium lump on my right knee and multiplied, I have had 2 surgeries and removed one whole lump removed, the secon surgery was...
    emc222 emc222
    Aug 10, 2012


    I have Autoimmune hep,PBC and crest syndrome. I am 41 and feel really sick.
    Arielprncs Arielprncs
    4 Responses Feb 1, 2012

    Hi, I was diagnosed with Limited Crest Syndrome

    around twelve years ago, having asked what it was I was told, too complicated, look it up on the internet....Anyway have the usual symptoms, Raynaulds, difficulty swallowing, leg pain, tired all the time etc. but one unexplained symptom (so far) is a peeling tongue which is...
    gillybee77 gillybee77
    66-70, F
    1 Response Nov 1, 2014

    Still Looking For Answers....

    I was diagnosed with Crest late last year after being sick for almost 2 years. My symptoms are the following: Weight loss, joint pain, pain in fingertips, exhaustion, hair loss, esophageal dysfunction, always cold, no appetite, diarrhea- I'm sure I missed a few, but those jump...
    MeganB10 MeganB10
    4 Responses Jun 17, 2011

    Crest Syndrome

    Hello all! I'm a 30 female and I was just told I have Crest Syndrome, something I've never heard of before. I've been googling and it's scaring the heck out of me. I have no symptoms except about a year ago when I developed severe mouth ulcers and was brushed off although I've...
    meandbella meandbella
    5 Responses Apr 20, 2012

    I'm Still So Frustrated With The Water And Pain

    Hi, I'm in need of anyone's help or suggestions. I have systemic (limited) scleroderma, fibromyalgia, and several other autoimmune disorders. I'm fairly knowledgable about most of it, it being the symptoms (tons), prognosis (no cure at this time), and related issues of CREST...
    debicatlover debicatlover
    51-55, F
    4 Responses Aug 9, 2012

    I have had scleroderma of the esophagus

    for @ years now. I have woken up on respirators more than once. Now I have been told its in my lungs. I have Lupus and CREST. I feel like I am dying. One more organ involved, one more symptom appears, no answers, only questions. I am going for a catheterization to measure my...
    jojosig jojosig
    46-50, F
    1 Response Jan 28, 2016

    59 And Still Going

    At 26, they told me RA. Than in my 40's a dr said Reynolds. In 2004 I was told I had Cronic CREST Symdrom. Than in 2005 I developed Fibromyalgia. Lost my job as I could hardly walk. So here I am 8 years later, now disabled. I have had numerous surgery's lost a finger and have...
    chrislnd58 chrislnd58
    61-65, F
    Oct 17, 2013

    today on dec 18 2013 ,

    that I have crest syndrome . it as been over a year to get here . I caught it early they said , so it is good . I wonder if it is good . how to you deal with it to know it could end your life at some time and point . how do you have a normal life with this , dr said there will...
    aprilapplegate aprilapplegate
    31-35, F
    4 Responses Dec 18, 2013

    Finally, A Diagnosis - Crest Syndrome

    I am a 62 year old retired female.  I am married and have been retired from the government about 7 years.  We just got our first grandchild and I want to be an active, vital, functioning member of society.After about 2 years of running from one doctor to another, I finally...
    Dee21EP Dee21EP
    2 Responses Jan 9, 2012

    CREST - It Can Break Your Heart

    Hello to anyone who may be interested. I was diagnosed with CREST syndrome about 7 years ago now. It has really changed my life. My doctor doesn't give me much information which is frustrating and I am unable to obtain another specialist as they all are so booked up and not...
    samnobi samnobi
    61-65, F
    12 Responses Oct 5, 2009

    I was diagnosed with Raynards in 1987

    and then with CREST Syndrome in 1989. It was a scary time for me as my doctor called my whole family in and told them I has 3 to 4 years to live. Needless to say I am still here. I have managed my symptoms without meds. for the past 15 years by following common sense, but also...
    1990ppaul 1990ppaul
    Jun 23, 2015

    Crest Changing My Life

    I am 36 female. I have had crest syndrome for 21/2 years now. My hands are mostly affected as well as other problems. I get ulcers on my finger tip all the time which take months to heel. Crest has change my life in many ways. I once played sports in my teens and early twenties 7...
    dysart dysart
    3 Responses Jun 28, 2011

    Tired Of The Pain

    hello, I am new to this site ..and I'm so glad to chat with people who understand . I have been suffering for years from pain and weakness and you name it since I was 13...I am now 40..back then they thought I had Juvenile RA and then they said Lupus..they didn't reall know...
    moniquej4 moniquej4
    41-45, F
    Dec 8, 2009

    I Have Crest Syndrome

    I'm getting so depressed with this crazy disease. I was diagnosed with PBC in June of 2012 and then CREST in May 2013. I have so much pain in my knees and elbows and I'm told there is nothing anyone can do. I also have deep wrinkles around my mouth and red dots all over my face...
    debbiemasson63 debbiemasson63
    66-70, F
    3 Responses Sep 15, 2013

    Crest Will Simply Have To Keep up With Me.

    I am a very active 57 year old lady who will not stop to play with this so called Crest issue. while it has slowed my pace I have not given in. I am looking to see what others have tried and maybe diet change. I also would like to know about some of the drugs others have used and...
    MightyMuse MightyMuse
    5 Responses Dec 4, 2012

    I have Crest Syndrome,

    i'm only 20 years old, I've known about it for about 2 years now. I'm currently 14 weeks and 5 days pregnant. Just curious to know how everyone deals with the pain that they get? I get really bad chest pain that lasts for days. What things have you been taking that seems to help...
    taylaelise taylaelise
    22-25, F
    2 Responses May 7, 2015

    Pulmonary Fibrosis Caused By Crest Syndrome

    I was diagnosied with crest sysdrome after moving to Arizona about a year and half ago.  When we moved here I started having trouble breathing and, everyone said it was the high elevation, but after six months I should have been breathing normal.  My family doctor sent me to a...
    madarrow madarrow
    1 Response Nov 18, 2011


     Hi guys and gals,I am really glad I found this site...good to know there are folks I can relate to. I developed C,R,E,S,T.  several years ago and still do not understand what is going on with my body and how bad its going to get down the road!! please help!!!!!!!!!! thank you...
    gateway102 gateway102
    51-55, F
    3 Responses Jun 23, 2011

    Diagnosed At Age 30, Two Toddlers At Home

    I am 32 years old and I was diagnosed with CREST two years ago after I tested positive for antibodies related to this disorder. At the time, I had a 1 month old and a 16 month old at home and was completely exhausted when I developed my first digital ulcer. In the past two years...
    Vegaliscious Vegaliscious
    3 Responses Jan 28, 2012


    I am a 57 years old and 2 years ago was diognosed with CREST, I had been misdiognosed prior to this the doctor said I had lupus, when we moved and I changed Drs. a lot of blood work was done more than the previous place. Here Iwas told that I did not have Lupus but that I had...
    silviasm2002 silviasm2002
    56-60, F
    5 Responses Apr 25, 2012

    Need Answers

    Hi I was wondering if anyone with crest sydrome is loosing there hair.If so could you let me know.And do you loose all your hair.thank you Martha
    flipper123 flipper123
    51-55, F
    2 Responses Mar 15, 2012

    Learnin To Cope

    i am a widowed mum of 4 i av had medical problems for a lot of years but av just een diagnosed with schleraderma and crest syndrome also av lung disease due to this .....if i had been treated for certain things in the first place i wouldn`t be in this position now ... i find it...
    saz44 saz44
    41-45, F
    3 Responses Sep 11, 2012

    Yes I Have Crest

    My gastro doctor informed me while I was on tge tabie getting my throat stretched that I had crest after I was talking to the nurses about my cold hands and I though it was Raynards but I had never had it diagnosed.  Well it turned out he was riight. I have all 5 points...
    janemarion janemarion
    1 Response Nov 10, 2010

    Lonliness Of Living With Crest

    hi, my name is paula im 46yrs old and was diagnosed with crest syndrome 3yrs ago.. it all started when i was feeling really exhausted all the time and getting a lot of chest infections a year before i was diagnosed, my dr told me i had SAD syndrome but i knew it was more than...
    paulamarsh paulamarsh
    5 Responses Sep 17, 2010


    I to feel all alone with this disease.  I started working as a hairdresser since I was 16 and around the age of 42 I started feeling sore joints, roseacea, stomach pain and was diagnosed as being a woman it had to be stress.  I had some days where I was in tears from...
    boldables boldables
    2 Responses Oct 25, 2010

    Words To Live By

    I shared with an EP friend that I am at a low point and was feeling particularly worried about test, results, then what? Today my EP friend reminded me not to worry, to stay receptive to the possibility of change, to keep a positive attitude; one day it might help someone else...
    debicatlover debicatlover
    51-55, F
    May 21, 2012

    Irritating Doctors....

    Hi I'm 23 years old, I do not have a diagnosis of CREST but really strongly believe I have this, my mum also suffers from this condition and I have the same symptoms as her. Today I had an appointment with my GP to discuss my concerns. This did not go well. She started by saying...
    greenie27 greenie27
    22-25, F
    2 Responses Sep 4, 2012

    It's Not Just Crest

    My name is Debi, I'm 53, and I've had health problems for over 40 years. I've known about the fibromyalgia for more than 20 years, and so many of my unexplained problems were blamed on it. A fluke blood test by a curious rheumatologist gave me the first autoimmune disease, lupus...
    debicatlover debicatlover
    51-55, F
    2 Responses May 6, 2012

    Crest / Bladder Infections

    I was diagnosed with Raynaud's in my teens, I have since been diagnosed with CREST, I have just turned 50. My fingers are bad with calcium deposits, I have just had my 3rd op on my fingers, and need to return to get calcium lumps removed from four fingers on my other hand. I...
    N2msy N2msy
    51-55, F
    1 Response Jul 13, 2013

    (crest) Greetings From Finland

    Hi everyone! My name is Anna-Maria and I'm 34 years old Finn. I've been diagnozed some kind of systemic scleroderma, probably CREST, last year. My first symptoms, chronic fatigue and small fever, came 2005. I have cold fingers and nose(!), sometimes have painful...
    AnnaMariaTikkanen AnnaMariaTikkanen
    31-35, F
    Dec 3, 2009

    Found This On The Southwest College Of Naturopathic Medicine's Website, Thought It Might Give You Hope.

    I will never forget that day. As I drove home, life around me seemed so different. There were people just living their everyday lives, never knowing or being affected by the news I had just received. I had been sick for a while and every doctor I had seen could not figure out...
    nicmar25 nicmar25
    41-45, F
    Aug 27, 2013


    I am a 52 yr. old male , and was diagnosed with systemic sclerosis with CREST , this disease really sucks!!  I am under the care of the doctors at the U of M in Ann Arbor they are great. I have alot of leg pain, tired all the time and swollen fingers and feet.
    jgould003 jgould003
    3 Responses Aug 21, 2010

    Coping With Crest

    I have been diagnosed with crest syndrome and it has to be the most irritating thing I have ever experienced. At first I thought I could deal with it but now I am frustrated. I have developed hypopigmentation on my face along with tightness and shiny spots. I have never worn...
    bstarr bstarr
    5 Responses Jun 26, 2009


    I have tested + for the ANA marker for Crest Syndrome.  I went to the doctor with severe Raynauds in my hands and feet and he told me that I have the marker for this disease.  I am very FRUSTRATED at this point because until there are more symptoms that pop up...
    jillr jillr
    7 Responses Jul 26, 2009

    Going Downhill Fasr

    I have crest syndrome and a few other symptoms, and it feels like there adding something new every doctors visit. my legs at my ankles knees and toes cause such extreme pain i have trouble just walking to the kitchen. The fact i live in such a cold area, Spokane doesn't...
    donjp68 donjp68
    1 Response Jan 16, 2012


    my dermatologist is the dr that strongly believes I have crest. I have all the symptoms, have had for years, I am now 60. every year gets worse. arthritis and reynauds are severe. have lost several nails and toenails because of disease. feeling in my fingers is almost entire...
    donnaplahmer1 donnaplahmer1
    61-65, F
    Nov 30, 2013

    Uncomfortable In Any Positions

    Hello, my name is Susan and I am 54 years old.  I have CREST SYNDROME, FIBROMYALGIA, OSTEOARTHRITIS, RHEINARD'S SYNDROME, FACTOR 5 LEYDON (a blood clotting disorder), and EPILEPSY.     I have been to so many doctors and currently am taking 12 prescriptions, none of which are...
    SincerelySue3958 SincerelySue3958
    2 Responses Mar 29, 2012

    Crest And Lost

    hi every one  i have been told about 2 yeas ago i have crest my doctor  also told me i have rheumatoid arthritis and serlerus systemic   when i asked him what it means to have crest he just said its in your blood and its a disorder in the blood  he then sent me to a...
    devont devont
    51-55, F
    3 Responses Dec 14, 2011

    My Journey....which Keeps Changing

    At 18, I was diagnosed with Raynauds and started on Cardizem. It didn't work too well as my Bp was normally about 90/60. I am now 39, and for the last two years, have had out-of-control Raynauds issues. Stress makes my hands lose circulation. Grabbing a frozen pizza out of the...
    ColletteMeyer1 ColletteMeyer1
    Sep 29, 2012

    5 Years Since Crest Diagnosis

    I was diagnosed with Crest at age 40 during an unexplained bout with hives that lasted for several months. ANA markers repeatedly indicated CREST, but at that time I had no symptoms to speak of and didn't give it much thought other than a few google searches that led me to...
    Hevans18 Hevans18
    46-50, F
    Oct 2, 2013

    Diagnosed 12 Years Ago

    i was diagnosed over 10 years ago. and continue to look for new ways to handle the disease.
    janikone janikone
    2 Responses Mar 18, 2012

    I Have "CREST Syndrome" Too

    I have CREST Syndrome too, along with two other autoimmune illnesses - Rheumatoid Arthritis, and Lupus.  Since I have all three, I am technically diagnosed with "Mixed Connective Tissue Disease".  I have symptoms of all three illnesses, but my the strongest...
    Butterfly819 Butterfly819
    36-40, F
    3 Responses Aug 31, 2009

    Tired Of The Pain

    hello, I am new to this site ..and I'm so glad to chat with people who understand . I have been suffering for years from pain and weakness and you name it since I was 13...I am now 40..back then they thought I had Juvenile RA and then they said Lupus..they didn't reall know...
    moniquej4 moniquej4
    41-45, F
    5 Responses Dec 8, 2009
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