My duaghter has infantile digital fibromytosis and I am trying to get more info on this topic. When she was 2 she had this condition and then it went away. She just turned 7 and we have noticed that it seems to have reoccured on a different finger now. Does anyone have any info that may be helpful to us? Has this happened to anyone else?

The friend of mine who has this misterious disease has very large bumps all over her body including her face. They are very disfiguring and the doctors have determined that hers for the most part are filled with fluid. When removed, they come back worse. They are very painful. Her daughter in her early 20's has also developed them, and currently has one the size of 2 men's fists, on her leg, and it has opened up and is bleeding. Has anyone taken this problem to a doctor at the Mayo Clinic and had success in it's treatment? Please respond.

I am a woman in her mid fifites and over the last 10 years these lumps on the bottom of my feet ( in the arch of foot) have been getting larger,it started out the size of a pea and at this point They are the size of a large marble and are on both my feet... Recently I have found another lump appeared, making it 3 on my right and 2 on my left ..
They fortunately don't hurt but esp the right foot is tormenting me..While in Germany the doc said it was what he called Fibromytosis and that operating on them is NOT recommmended becasue if not all cells were removed they could some back with a vengenace.. Could you please give me more on this condition and what do I have to look forward to in the coming years if they continue to grow...

i am just wanting to talk with others who suffer this horrible condition, in 1897 i had noticed for 2 yrs previous stiffing of hands in mornings, by 87 it spread to beddridding me i had a lousy g.p. who did not listen, i felt 4 lumps 2 on each side of neck one at base of skull the other 3 'S BELOW, VERY TENDER AND RESTICKING HEAD MOVEMENT, THEN ATYPICAL SIZURES, NOT CLONIC TYPE, BUT I WOULD CHECK OUT 15 SEC'S TO 15 MIN'S, FALL TO FLOOR, OFTEN BREAKING A BONE TWICE MY NECK. THIS DOC SAID IT WAS STRES I WAS A HAPPY r>n>, I FINALLY HEARD OF CLINIC IN s.f. ca., i went i had every symptom, liver labs off, high plateletes and the benigne lumps are attached to spinal cord, explaining hand pain crampmps and siffness very not like rhumatism, i was put on klonapin stopped siezures and allowed resfull sleep and decreased high startle reflex and yes narcotics a long acting morphine, what a relief! the pain i had suffered was unreal. then i was in a really bad accident had 35 major surgeries, a semi hit me. now crushed vertabrae broken everything and had to increase morphine. i have an excelent pain doc conciencious and wise, not stingy. he gave me my life back. i must sleep 10 hrs to function out of the fibro fog does any one else need sleep, i was told it is 1/2 the cure. my tumors cannot be removed so 3 yrs chemo was injected in them now 1/4 the size. i still have multiple steriod/marcaine injections that help 4-6 months. that's about all they can do is make me comfortable. my mom died at 47, i'm 49 and look 39. my older sister has it but luckily the could remove the largest tumor behind c-5 and replace her vertabre with titanium, now that her blood flow in and out of brain is open she is a new personality, for a while she seemed nuts, a smart surgeon at same clinic operated! she is normal, excepr body wide pain. the do not give her narcotics she will not fallow instuctions so it is dangerous. for years i was in hell a demanding husband up at dawn, a adopted brat and folks who were clueless, i looked normal mostly so they labled me a nut. how off they were. i have been geting these painfull injections into trigger points 8 yrs! i do not think they could do that!! now i have caudal epidurals, 8 inch catheters down my spine to numb up fractures that no surgery can fix. it is a mess having both on top of each other. someone said it can back off in 50's, i wish....someone feel free to tell me your story i feel isolated, i am affraid to date because i can't keep up, i am a good coke homemaker but as you all now excersize is murder. i still camp and go outside, but social stuff is limited. my husband of 27 yrs said " i did not want a cripple for a wife" and cheated!!! i left alone. cute brave but miserably alone. did that happen to anyone else? i wasn't making the 50.00 bucks an hour anymore, made me useless, i did get ssd in 4 weeks of application!! life changes, i still make the best of things. i feel i desrve a husband and family life so i do not run or stay in prolonged activity, there's nothing wrong with my sexuality, why do folks think that just because you have a disease????