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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. 119 People

    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 26-30 2 Responses Jan 27, 2012

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    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 56-60 1 Response May 23, 2011

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    Diagnosed 12 Years Ago

    i was diagnosed over 10 years ago. and continue to look for new ways to handle the disease.
    janikone janikone 51-55 2 Responses Mar 18, 2012

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    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 56-60, F Oct 17, 2013

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    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 11 Responses Oct 5, 2009

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    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 61-65, F 2 Responses Sep 15, 2013

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    Hopeful

    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 51-55 3 Responses Aug 21, 2010

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    Frustrated And Lost

    July 17, 2011 my aunt passed with all of CREST. She lived with me for 2 months leading up to hear death. She was diagnosed 5 years ago. About 2 days ago I put on my watch and noticed a lump on my wrist. The same spot, size and tenderness my aunt started. About a month ago the...
    mmc818 mmc818 26-30 1 Response Dec 27, 2011

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    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 61-65 2 Responses Jan 9, 2012

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    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 40, F 5 Responses Dec 8, 2009

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    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 51-55 Sep 24, 2012

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    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 31-35 3 Responses Jun 28, 2011

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    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

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    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 36-40 4 Responses Jun 17, 2011

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    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 41-45 1 Response Jan 16, 2012

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    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 56-60 4 Responses Dec 4, 2012

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    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 2 Responses Dec 18, 2013

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    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 Jul 13, 2013

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    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 36-40 Sep 29, 2012

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    Alone

    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 51-55 2 Responses Oct 25, 2010

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    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

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    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

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    Frustrated

    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

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    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 18-21 Aug 10, 2012

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    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

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    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 61-65 1 Response Nov 18, 2011

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    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 70+ 1 Response Nov 10, 2010

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    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

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    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 26-30 4 Responses Apr 20, 2012

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    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

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    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

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    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 46-50 2 Responses Dec 30, 2011

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    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

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    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 61-65, F May 6

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    (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

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    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 36-40, F Aug 27, 2013

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    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 31-35 3 Responses Jan 28, 2012

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    Hi

    I have Autoimmune hep,PBC and crest syndrome. I am 41 and feel really sick.
    Arielprncs Arielprncs 41-45 4 Responses Feb 1, 2012

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    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 46-50 5 Responses Sep 17, 2010

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    C.r.e.s.t.

     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 1 Response Jun 23, 2011

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    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 26-30 5 Responses Jun 26, 2009

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    Frustration

    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 36-40 7 Responses Jul 26, 2009

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    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

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    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 51-55 2 Responses Mar 29, 2012

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    Frustrated

    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

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    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 2 Responses Dec 14, 2011

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    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 40, F Dec 8, 2009

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    How to get a adult diagnosis for ASD (Asperger's Syndrome) ... Do your homework .. It's a complex subject . Talk to those who have been diagnosed . The internet is a good place to...
    HomeJamesASD HomeJamesASD 46-50, M 1 day ago

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    Has anyone changed their diet aside from salt intake and hydrating with lots of liquids? Wondering if that would help as well? Also has anyone had good experiences with pindolol...
    Grace1549 Grace1549 31-35, F 1 Response Oct 2

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