I Have Sapho Syndrome

A SAPHO Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with SAPHO Syndrome. You're not alone. 33 People

    looking for anyone that has sapho.

    sure need someone who understands this
    Kimslack1 Kimslack1
    51-55, F
    1 Response Aug 12, 2015

    I was diagnosed with Sappho Syndrome in 2012,

    with enlargement in a clavicle, the sternum and a rib, as well as blisters on one foot. When I have a flare up, I have pain in the clavicle, a feeling of constriction in my thoracic spine, and eye strain in one eye, as well as severe fatigue and trouble concentrating. Fatigue...
    annastrom annastrom
    51-55, F
    Dec 28, 2013

    I am on methotrexate

    and am having many issues with the side effects. Is there anyone else out there that is a professional athlete like myself that is trying to stay active at that level with the drugs needed for this disorder and the pain involved. Started last summer with pain in left...
    udoman udoman
    61-65, F
    1 Response Jun 2, 2014

    In Limbo

    I started having back pain in my teens. But the really bad stuff started in July of 2009. Excruciating Chest pain that began in my sternum and has now taken over my entire ribcage. I was DX'd with Undiffrentiated Spondylitis which really fits since I started having other symptoms...
    LisaNR LisaNR
    2 Responses Jan 26, 2011

    I Have Been Suffering From Sapho Syndrome For 20 Years

    Hi all,for those who think they have SAPHO Syndrome, think again - it is an extremely hard Syndrome to diagnose - I was constantly going to Orthapedic Specialists for years with pain in my bones and always told there was nothing wrong - it was only 10 years ago that I finally...
    shoughton shoughton
    9 Responses Jun 30, 2011

    Still Searching For Answers

    I have been told that I exhibit the many symptoms of SS.... All I know is the things I have tried to comat the various symptoms help minimally..... What symptoms are you experiencing? I experience episodic fatigue, muscle tenderness/soreness, swollen lymph nodes, cystic...
    sohoinsf sohoinsf
    9 Responses Nov 17, 2009

    Fellow Sapho Suffer

    I can't believe I finally found someone else who suffers from Sapho I thought I was going mad with the symptoms of painful flare ups which. Nothing seems to help
    Marywright1 Marywright1
    1 Response Feb 24, 2012

    I have Sapho syndrome

    and I would like to know if anybody out there can share some tips and tricks to sleep better. Thanks
    diegodiego diegodiego
    31-35, M
    Dec 30, 2013

    I Am Disfellowshiped Jehovah Witness

    I was married 32 years and serving jehovah. I had a heart attack I died and was given a 2nd chance at life. At heart rehab I met a wonderful guy we became freinds then more. I didn't plan on this tohappen howevder I was molested at 16 by a priest and then my pysical ed teacher in...
    joeksboy123 joeksboy123
    1 Response Aug 1, 2010


    Im 16, and when i was 8 years old i complained of backpain, my parents took me to the doctors where they said it was growing pains. a few weeks later my parent took me to hospital because i was complaining of back pain once again. After having many tests...
    Alexp93 Alexp93
    18-21, F
    3 Responses Jun 20, 2010

    Here Is Something People Find Useful In Their Journey With Sapho

    Hi, there is a page on Facebook that is dedicated to Sapho syndrome and people get together to share their stories in large numbers for this rare illness. It is very helpful to hear people's results on different treatment and just seeing how they manage their pain so I thought...
    cutiecs cutiecs
    31-35, F
    Jul 15, 2012

    Do I Really Have Sapho?

    I was diagnosed by a Rheumatologist with Sapho syndrom 5 years ago after a MRI scan showed changes in my spine.   Since that time the only symptoms that I have are a mild case of Psoriasis under the hair line on my neck and chronic thorasic back pain.   I...
    11acynthia 11acynthia
    8 Responses May 3, 2010

    Recent Diagnosis After 4 Years

    I have recently been diagnosed with SAPHO syndrome after being basically fobbed off for years I have complained of painful and aching shoulder joints since the age of 13 and been repeatedly told it was just inflamed rotary cuffs and referred to physiotherapy, which I'm pretty...
    alicegriffiths alicegriffiths
    18-21, F
    1 Response Dec 9, 2012

    Just Diagnosed

    Its all a little scarey and overwhelming at the moment. Treatment options are very limited as I am still breastfeeding my baby and would really like to have another one. This leaves me with some difficult decisions. Does anyone know if saphos is hereditary? Has anyone used...
    Exhaustedme Exhaustedme
    36-40, F
    1 Response Dec 24, 2012
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