Comments on Fibrous Dysplasia

The following is a web site that contains info on how to join the free support group that consists of doctors, nurses, adults, and children who have FD with different degrees/intensities and much knowledge to share. Your FD is in your pelvis- weight bearing bones. This is just common sense that it would cause extra strain on your muscles hence muscle spasms and increased pain. The most compassionate physicians seem to be oncologists- but know that radiation therapy can cause FD to transform our FD into bone CA. There are many things to tell you. Low pressure weather systems, menses, hormonal changes, can attribute to increased bone pain. Sudden weakness occurs and no one knows why, etc... If you can join the FD support group they are in general a very intelligent and supportive group. I pray this helps.

I see here so many discusses about this diseases, but nobody found out a cure, or cause, or finding this problem in pregnancy period. I understand that a specific fibrous tissue of bone affect a normal bone. How is the structure of this bone, how can be detected with special machines, how to localize and detect with X-Ray or RMI or something else to surgery and cure for ever??? Genetic problem, but how to cure, and what is the root of this disease if nothing else than pollution and E-food? I'm interest if someone cured this disease and what he/she did??

Hi retired RN,
I too am a nurse with FD and I'm struggling with work and being on my feet so much because of the pain and muscle spasms. I have FD in my pelvis, and have been told several times that it shouldn't cause [that much] pain or the overwhelming muscle pain in both my legs. Some days aren't bad, but then I have flare ups, during which I can't work. I'm interested in hearing your experience.

My son had the problem in his right leg. The bone was removed [about 13 cm] and regrew.

who was your sons dr? my daughter has fd in her right tibia. her leg is bowing more and causing more pain. thnx

Yes, I have FD in my left hip that extends to my left foot and am on disability due to the chronic pain and muscle spasms.

I was diagnosed with polyostotic fibrous dysplasia as well when I was fifteen years old. Now, 3 years later the pain seems to be increasing. I am now looking for treatment to lessen the pain.

I have recently been diagnosed with FD in my hand and more recently - it appeared within 2 years in my elbow. having surgery to shave down bone to release ulnar nerve......hope this ends it.