I Have Eosinophilic Fasciitis

A Eosinophilic Fasciitis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Eosinophilic Fasciitis. You're not alone. 115 People

    June 2015.. Hi I am a male 57 yrs in New York,

    Long Island and was diagnosed with EF about 2 months ago. My calfs and forearms are effected. They feel very tight and are getting worse as time goes on. I am on 60mg Predinsione for 4 weeks 6/8/2015 Also have Vitiligo, full of whites patches all over and new areas appears...
    johnserra johnserra
    56-60, M
    2 Responses Jun 10, 2015

    Trying To Understand Ef

    Hello, my name is Chris and I was recently diagnosed with EF in February of 2011.  I started noticing symptoms in the fall of 2010.  I have been a runner for a while but noticed in the fall I would have a hard time running a mile.  I also noticed that both my ankles would...
    crd1991 crd1991
    36-40, F
    1 Response Apr 27, 2011

    Maybe EF?

    Where to begin? I starting getting flu-like symptoms in March 2012 accompanied by extreme fatigue. Later in March I strained my left forearm, which swelled considerably and hurt to even twist door knobs. This was attributed to over-use and rock climbing, but it did not improve...
    fish431 fish431
    1 Response Apr 28, 2013

    I Am 29 From Uk, I Have Eosinophilic Fasciitis.

    Hi there peeps I was diagnosed with EF in May this year after becoming ill August 2011. Had lots and lots .... and lots of blood tests and was told nothing was wrong for a while but after swelling started in october they started me on 30mg prednisone. I felt bloomin awful...
    Amandapandapop Amandapandapop
    26-30, F
    11 Responses Sep 25, 2012

    Hi everyone , Wow it's great to find other

    people with this condition ! I'm in Ireland , nobody's even heard of it . My rheaumotologist said I'm the first he's dealt with here , initially I was thought to have scleroderma , but luckily he came across EF in the states and recognised it . I'm 32 and have had it about 18...
    KimberlyK82 KimberlyK82
    4 Responses Nov 16, 2014

    Greetings. I'm a 49 year old male

    and I was diagnosed with EF just under 3 years ago. I started on 60mg of Prednisone and am now down to 20mgs a day. I'm not sure which is worse, EF or Prednisone, either way I feel in my gut that I caused this disease to happen primarily with stress and anxiety. I've been a...
    Gobione Gobione
    2 Responses Nov 5, 2014

    I ave had this condition

    for 2 years. I started on 75mg prednisone and currently on 4mg. I have been very active over the past 2 years especially after the steroids controlled and reduced my swelling. I usually run 4-5 days week. However recently my legs started to itch all over with little lumps hives...
    onelky onelky
    56-60, M
    4 Responses Feb 15, 2014

    EF With Widespread Body Cramps.

    I was recently diagnosed with EF and Schleroderma. It was confirmed by 2 biopsies. The first, was the calf of my leg. The second was a full thickness biopsy of my thigh. I am presently taking 50 mg of prednisone. I took 60 for 5 weeks. I went from being pre-diabetic to full...
    Jcs2010 Jcs2010
    7 Responses Feb 12, 2012

    I was diagnosed on with what is lovingly called

    "EF", I see, on 1/8/2014. I am 46, Caucasian female, living in the Midwest, USA. I am not an athlete though I pretend I can snowboard during the winter. ;) I am 5' tall and weigh 113 lbs. In the last 18 months my life change came from being a stay-home mom (4 kids, 23-13...
    Kimbrulea Kimbrulea
    3 Responses Jan 13, 2015

    I Think I Have Ef, I Just Can't Find A Doctor Who Will Listen To Me And Test Me For It...

    I am in Arizona and have all the symptons but cannot get the doctors I have seen to really listen to me. They don't hear me when I tell them the extent of my pain and the extent of the limitations that have caused me to not be able to do things I normally do like stand up from a...
    1AZAlicia 1AZAlicia
    61-65, F
    2 Responses Nov 14, 2012

    11 Since 10

    I was diagnosed with ef in january of 2012 since then i have been on loads of meds. Methotrexate shots into my stomach once a week. Solumedrol, and prednisone. Im off all that now because it didnt work. I was going to physical therapy twice a week. im done with that for now. Now...
    Izzie01 Izzie01
    16-17, F
    2 Responses Aug 8, 2013

    I saw my hematologist Fri

    and he decided to send me for a muscle biopsy and encouraged me to get a 2nd opinion from a rheumatologist. I had blood work done and he says my eosiniphil level went down to 800 from 1500. I'm not sure why. I had a relaxing stress-free weekend with friends a couple weeks ago in...
    wandawoof2015 wandawoof2015
    56-60, F
    Aug 26, 2015

    Hi!! I'm a 38 years old woman.

    I was diagnosed eosinophilic fasciitis in February 2015. I'm treated with: prendisone 18 mg a day, 25 mg metrotrexate at week + folic acid 5 mg, vit D for bones. I removed gluten, milk and milk derivatives from my diet. I practice lymphatic manual drainage and lymphatic...
    claude77 claude77
    36-40, F
    1 Response Sep 4, 2015

    What Causes Ef?

    My EF started in 1996 with swelling legs, hard skin, morphia, carpel tunnel in the hands, locked joints, and Type II diabetes. I was on prednisone 20mg a day for a year and methotrexate for another year. I have survived but was left with many after effects. What causes EF? I am...
    PaulCunningham PaulCunningham
    3 Responses Feb 27, 2011

    How have you dealt with the weight loss

    and did you stop losing weight when your body hit a certain weight/proportion? The 2 years before i got EF, I lost 17 lbs while on Weight Watchers (i was on the high end of "acceptable" weight for my height & frame. it was a struggle to lose the weight. Fast forward ... in the...
    wandawoof2015 wandawoof2015
    56-60, F
    1 Response Aug 16, 2015

    Eosinophilic Fascitis

    Hi All I am 53 and have had eosinophilic Fascitis for 18 months. My arms and legs tummy and face have been badly affected. I have been on methotrexate for 9 months and Predisalone. I have just stopped the methotrexate and been put on Mycphenolate 4 tablets a day. I just...
    janw1 janw1
    7 Responses Apr 11, 2010

    Hi all, I have found something amazing it is

    called the Bowen technique it is like acupuncture but without needles. The therapist works on your fascia and I have had amazing results. Can't recommend it enough I have reduced all of my pain meds by half and my movement is considerable better after just 3 sessions. To top...
    MrsJenksy MrsJenksy
    41-45, F
    2 Responses Mar 23, 2015

    Just Diagnosed With EF

    Hello all, I am a 32 year old female and have just been diagnosed with EF. I had been having symptoms since Oct 2012 (11 months). At this point I can't open or close my hand at all and am in pain 24/7. My skin is getting very tight in my legs and arms and I am having a lot of...
    shanmt shanmt
    31-35, F
    2 Responses Aug 7, 2013

    Relapse Of EF

    Hello there, I am a 36 year old male living in NJ. I was first diagnosed with EF 3 years ago. I had all the classic symptoms: started with extreme wrist and ankle swelling, elevated eos, then eventual hardening. I was pretty aggressive with the Doctors and we ended up getting...
    EFinJersey EFinJersey
    36-40, M
    6 Responses Apr 1, 2013

    Need Information On This Disease

    Hi,My name is Linda and I have Ef. I am now on Methotrexate. My skin is getting better but my joints are getting worse. Ever since I came off of the prednisone. I have been taking Methotrexate for 8 months and there is a big difference in my skin. My legs are the worse. Does this...
    lcuster lcuster
    56-60, F
    21 Responses Feb 1, 2010

    Dmso/msm = Ef Pain Relief

    Folks, please STOP taking Prednisone! STOP taking Methotrexate! STOP taking drugs that could damage your eye-sight, liver, or immune system. Eosinophilic Fasciitis, also known as Shulman's Syndrome, is a very rare condition, there are 250 to 300 known cases since it was...
    31-35, M
    3 Responses Jul 17, 2012

    There is an active Facebook page

    for us. Check out Eosinophilic Fasciitis Support Group. Lots of good discussion there.
    LauraOLeary LauraOLeary
    56-60, F
    1 Response Jan 29

    In July 2014 this all seemed to start with a

    bad summer cold, which I only mention because I can't help but thinking it all started with a virus. Lots and lots of other stressors all happened about that time, and afterwards I thought I was just sore from all the coughing. My feet and ankles also swell some each summer in...
    LauraOLeary LauraOLeary
    56-60, F
    3 Responses Feb 16, 2015

    I started to show symptoms in October 2012.

    My feet then legs started swelling. After it happened a couple of times I went to the doctor. They did loads of tests and they thought there was something wrong with my kidneys, they thought it was lymphodema. By Christmas I was I pretty bad shape, my hands had clawed and I...
    MrsJenksy MrsJenksy
    41-45, F
    1 Response Aug 31, 2014

    After 15 months FINALLY I have an answer.

    My symptoms were severe leg edema that turned into pitting edema swollen arms swollen hands and fingers with the curvature of my fingers. I also have carpal tunnel syndrome in both hands but do not have any of the symptoms of carpal tunnel even though I was previously in a job...
    wandawoof2015 wandawoof2015
    56-60, F
    2 Responses Aug 13, 2015

    Hi, I am male and retired

    and was diagnosed with EF in July 2014. I started treatment in August 2014 and now it is a year later and I am already much better. I hope that gives you some comfort if you in are the early stages of this disease. I first noticed that everyday things like getting dressed...
    mogfitz mogfitz
    66-70, M
    1 Response Jul 20, 2015

    I'm puzzled beyond belief!

    my Doc said today's bloodwork shows my eosiniphil levels are normal. The muscle biopsy didn't show eosiniphils... (I have to get a copy of the path report still). I have all the EF symptoms...the treatment is still steroids. I didn't have the MRI done, but eosiniphil levels...
    wandawoof2015 wandawoof2015
    56-60, F
    2 Responses Oct 10, 2015

    I Was diagnosed in 4/2014

    after becoming symptomatic in NOVEMBER, 2013. Symptoms included blisters on my arms, tightness in my arms and legs, inability to close fists, then progressed to my legs feeling like logs. My rheumatologist starting to treat me very conservatively with low doses of methotrexate...
    18heater45 18heater45
    70+, M
    3 Responses Jan 21, 2015

    Eosinophilic Fascitis

    Hi I have had EF for 3yrs.now and have been taking prednisone off and on. I have morphea and very large lumps all over my body My doctor wants to put me on Remicade but my insurance won't approve it and I can't afford it on my own. I feel pretty good except for the side effects...
    kcruz2459 kcruz2459
    2 Responses Jul 18, 2012

    Just Diagnosed With EF

    Hello, I am a 56 year old female who has been just diagnosed with EF. I'm on prednisone (40 mg) but the added weight and fullness seems to make it even worse. Have more symptoms flaring up at end of day. Best time is in the morning. Now on methotrexate (6 tabs) daily. wondering...
    mvidas mvidas
    6 Responses Sep 6, 2010

    Supporting Someone With Eosinophilic Fasciitis...

    My fiancee has been experiencing inflammation in his hands, wrists, arms, legs, ankles and feet and over the last 6 months, we've been working with specialists to "try" to determine what he has and/or how to help. His doctors think that it may be Eosinophilic Fasciitis and have...
    mayboarder mayboarder
    2 Responses Apr 30, 2012

    24 Y/O Dental Student / Athlete

    I first showed symptoms at 22 y/o in June 2012. I had a physical job in a glass factory (silica exposure?), and worked out pretty hardcore 5-6 days a week. It started with a loss of Range of Motion (ROM) in my extensors, specifically my middle finger. I am a health freak so I...
    LuckyDMD LuckyDMD
    26-30, M
    3 Responses Oct 28, 2013

    I just found out today.

    My hands are too messed up / tight to explain my whole story, but I'm sure I have it somewhere to copy & paste. Been dealing with this junk for almost a year, but only seeing medical professionals since May. I'm in Arizona and would like to know if any of you are, too, or in...
    mrhanrahan mrhanrahan
    46-50, F
    Feb 8

    I'm 63 just diagnosed with EF.

    This is something not to believed. You eat right, keep your weight under control. Exercise basically live a good life, and then this. I now know that I am not alone, but somehow we need to share what we have tried and what works or didn't work for each other. There is no...
    Kscholes Kscholes
    61-65, F
    3 Responses Aug 26, 2015

    Eosinophillic Fasciitis

    HelloMy name is Joel, I am 41 year old male. I was diagnosed with eosinophilic fasciitis about six months ago and had suffered undiagnosed for about six months prior to that. Prior to this disorder I was in excellent physical condition and now live with many arthritic like...
    joelef joelef
    41-45, M
    5 Responses Jan 30, 2011

    Hello everyone, I'm 48 year old female

    and was diagnosed in Sept. 2015 with EF. I was 60mg of prednisone, but had a bad reaction and was taken off, now I'm on plaquenil, unfortunately it's not really working. I'm losing mobility to my right arm, and as the day progresses and I'm active I get worse. Any...
    Raaven08 Raaven08
    46-50, F
    3 Responses Oct 18, 2015

    Hi anyone, it's Nov 30 2015,

    and I still have EF. (Like I thought it would go away). My condition is still progressing. I have remained on the Prednisone/methotrexate cocktail, but I don't see any no remission. Will I ever? How long will I have to be on high doses of this stuff. Will I have any...
    Kscholes Kscholes
    61-65, F
    2 Responses Nov 30, 2015

    I'm back down to 20mg pred,

    fat face (uncomfortable & 20 lbs heavier after being on 40 mg & tapering since Nov). I decided I'm not going on methotrexate after reviewing Kathy S's experience. I've been massaging my arms & legs with cocoa butter/coconut oil/sweet almond oil mix (homemade) and my skin is...
    wandawoof2015 wandawoof2015
    56-60, F
    Feb 1

    Hi everyone I have EF

    and I am going on 3 yrs. now and my life has been different. I was 39 when my doctors told me I had EF and I had been sick for some time be for they found my EF. By this time my great job was gone and I would cry just to get out of bed. But I am not telling you something you don...
    jdecamp jdecamp
    36-40, F
    Dec 16, 2013

    My Eosinophilic Fasciitis Journey

    I am Paul and I have struggled with eosinophilic fasciitis since 1983. I was young, fit and trim then, ran 5 miles every morning, went to the gym and worked out 3 days a week, and otherwise in the prime of my life. With time, I noticed that it was more difficult to recover...
    motopaul motopaul
    56-60, M
    9 Responses Mar 16, 2010

    I Have E.f. Among Other Things

    I am a 64 year old female living in Iowa.  My story started in 1998 when I was diagnosed with bilateral breast cancer.  During a follow up with my oncologist, I was sent to a nephrologist who announced that I had only 50% of my kidney function left and it quickly...
    mamalank mamalank
    3 Responses Nov 1, 2010

    No Diagnosis Yet (24 Yr Old Male)

    Hi guys, My eosinophil count has been high for the past 6 months. My first symptoms were pains in my shins while walking and playing sport, then two months later my hands and arms began to get tight. My face sometimes swells up. My symptoms seem to go in cycles, for 3 weeks I...
    djpsb djpsb
    26-30, M
    1 Response Sep 19, 2013

    Wow.. There's More Out There Like Me? :)

    I'm 36, when i was in my early 20's i ended up getting the disease.  I heard that there is no way to track how it started or starts, but it was commonly amungst people who had what they called "Couch potato syndrome"  which was people who would sit on a couch for a month, then...
    rhyseckardt rhyseckardt
    3 Responses Jan 8, 2011

    I'm 22 years old I was diagnosed 8/2014 strong

    meds and physical therapy has helped a lot. I'm looking for anyone close to the four corners area! thank you. I'm so happy I found this website!
    KatelynnBradshaw KatelynnBradshaw
    22-25, F
    1 Response Aug 25, 2015

    For those of you on Facebook,

    I found a great group yesterday. About 60 members, several active that I talked to yesterday. This page won't let me post the link. Search for Eosinophilic Fasciitis Support Group.
    LauraOLeary LauraOLeary
    56-60, F
    1 Response Jan 25
More Stories