Retroperitoneal Fibrosis....Has anyone heard of this??

Discussion in 'Fibromyalgia Main Forum' started by fieldmouse, Sep 27, 2006.

  1. fieldmouse

    fieldmouse New Member

    I was diagnosed with retroperitoneal fibrosis. It is a fibrosis mass growing in the peritoneal cavity of my back. It can be life threatening or it can just sit there which is what mine is doing at this point. I was just wondering if anyone with FM or CFS has this? I have been told the conditions are not related but I really thought I could get more insight about it here than from my Drs. since they don't seem to know much about any of these conditions. I understand that this is a very rare thing and is more likely to happen to men. They have no idea why I have it....Anyone that knows anything about this...Please Help!!!!!! Mick!!
  2. Kazah

    Kazah New Member

    hi there, sorry to hear bout that. I think there are more links to other things. there is scleroderma and polymyaglia in my family (which are rare and not usually thought of as genetic but five family members share these conditions and are bieing studied by genetecists because of this). I have FM/CFS/etc and I have feeling they may be linked. they are all conditions that affect tendons, muscles, joints and whilst SD and PM are more serious in that they can be life threatening, affect organs and are definitley auto immune diseases. I think they have simularities in how they affect day to day life.
    hope you find an answer.
    <br>[<i>This Message was Edited on 09/27/2006</i>]
  3. Cromwell

    Cromwell New Member

    I never heard of this and so sorry you have it. I hope yours just continues to sit there.

    Wow, the human body, always something.

    Love Anne
  4. KelB

    KelB New Member

    I searched on Google and found this site run by individuals with the condition (no advertisements, not selling anything, completely non-commercial - hopefully meets ProHealth rules).

    Hope it's helpful.
  5. fieldmouse

    fieldmouse New Member

    I will just keep researching and hoping it don't get worse....thanks...Mick!!
  6. MEH3400

    MEH3400 New Member

    Your message was from a long time ago. I was diagnosed with RPF in 2008. It is very rare but it would be great to chat with others who have it.