fibrous dysplasia

Hey all, 

Does anybody have any experience with Fibrous Dysplasia?  I've been in pain a good 3-4  years now and my legs and hips are on fire every day all day.  I have some issues with my spine, L3-L4, L4-5 herniations, torn disks, spinal stenosis, osteoarthritis in addition to the fibrous dysplasia in my hip and doctors are having a hard time figuring out where my pain is coming from.  It's always my hips and legs but MRIs of my spine don't appear to show an issue that was cause so much pain so I just started seeing an FD specialist.  It was ridiculously hard finding one, only a couple in NY.  I have no idea how people live like this, I can't work, sleep, exercise, can't stand or drive for longer than 20 mins or so.  I'm only 34, no idea what I'm going to do for another 40 or 50 years.  my god that sounds crazy.  



  • I read it’s rare and genetic. I don’t have it but have had stiffness on hips from lumbar and facet nerve pain. Before Covid warm water Physio helped somewhat loosen things up. 

    There’s always treatments for pain if you find a good pain management Dr at a complex clinic at a hospital but need a referral from primary Dr 

    Well welcome here and there’s always hope for treatment never give up. Let us know what the Specialist does for you. Pain centres long waiting list, get in while you wait to see this Dr  if your Dr advises.

    See you. Charry


  • Welcome gumped we’re glad you’re here!

    If you will go to the search box at the top right of your screen and type your condition in there are a few articles on the subject there

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    Have you read through our Chronic Pain Resources on Spine-health? You’ll find a number of valuable Chronic Pain Coping Techniques and resources for Understanding Neuropathy Symptoms. It’s a comprehensive resource for those seeking more information about chronic pain. I hope you find these resources helpful.

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    Veritas Health Forum Moderator

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  • @gumped
    Doesn’t sound crazy at all....sounds perfectly normal. I don’t have your exact ailments, but mine is a spinal issue. I’m in the exact same boat life impact wise.. I can’t do any of those things either. Im 44, no partner, little to no social life, cannot work, cannot stay upright for anymore than an hour, maybe 2 - have had to live with my elderly parents while I try to fashion some representation of a life for myself.. Like you I’m terrified of what the future holds..
    I think your feelings are totally justified.. I cannot offer any advice, but can confirm there are people dealing with the same paralysing fears about a bleak future.
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