← Return to Chronic painful Bone Marrow edema (BME) bilateral feet

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@julesj

Hi, I have had chronic severe BME diffuse started R foot /L now as well.
With severe pain I woke up 2.5 years ago one AM and was diagnosed with stress fracture/severed diffuse BME in R midfoot. We immobilized my R foot for 4 mos. No resolution of pain or BME on follow up MRI to this day. Now 14 weeks ago my calcaneus spontaneously stress fractured with severe BME now in hind foot. 3 weeks later the L calcaneus stress fractures more severe BME i can't help but think the strain/
Pressure from having the BME gave me stress fracture potential .
I have gone from
Active personal trainer with full hiking, walking everywhere , weight lifting to disabled sedentary life due to this condition .No specialist has seen this chronic severe BME or knows who to send me to. I've been to multiple specialists in Sacramento. I called UCSF ortho and they don't even know how to treat it. The core decompression looks to be iffy results and mine is so diffusely throughout both feet now that's not viable. Honestly from my research core decompression seems like an iffy solution with very mixed results for anyone .
I have researched (as I'm Sure you have )every corner of every study online.
Iloprost is not available as IV infusion in US unless it's for pulmonary HTN. Any other info you have discovered ?
Thanks

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Replies to "Hi, I have had chronic severe BME diffuse started R foot /L now as well. With..."

Hello, I'm so sorry for everyone on this post. I have been losing my mind for over a month now. My foot and ankle started swelling one day at work( I've had swelling in both feet/ankles before for several years prior though) but mostly just my left foot. I was in a boot in my right foot from February through end of July maybe beginning of Augus5 and I'd only been out of the book for 2 weeks when my left foot started hurting.
I just bought brand new shoes since I only had one other pair which were totally destroyed inside. I figured it was my shoes that were the issue since both of my ankles were actually hurting a little but and a little swollen, but my one of my foot doctors said no. He thought it was heart or kidney related.
Long story short, I was in the emergency room twice after that once right after he saw me for the swelling, all tests were ok, and once 2 weeks after that as I got severe pain in my foot when I stood up at work to leave and could not walk on it at all. I went back to the ER and they took more tests and found a bakers cyst behind my left knee and said I had a bine sour in my left heel.
I figured that was it, the bone spur. I went back to the foot doctor he told me NO and to get an mri. I got the mri it said nothing about a bine sour but showed bone marrow edema involving the posterior 2/3 of the calcaneas ans extensive subcutaneous edema of the lower leg and ankle.
Both foot doctors said that should not be what is causing al of my pain but told me nothing else and gave me no other remedies.
I take motrin to help me sleep but other than that, I'm just in pain most of the time and use crutches to get around the house and don't go out unless it's physically therapy or a doctors visit or tests.i took a leave of absence from work because I just can't do it anymore.
Trying to figure out what a tops to take next. Might go see my oain management specialist, but I want to know the underlying condition as to what the issue is.
Looking for help and guidance anywhere at this point.