Hi, my name is Fiona. My daughter has just been diagnosed with CRMO chronic multi focal osteomyelitis a rare bone disease at age 10. , also had low vitamin D , before this she was full of energy and did all the normal things a kid does it took about a year to get diagnosed, about a month before before being diagnosed we got called into hospital on Christmas Eve because the Paediatrician thought she might have an infection in the bone or worse! after waiting there and after several blood tests they said they didn’t find anything sinister and sent us home and said they need to discuss the MIR scan. my daughter had previously had inflammation on her knee pains in both her upper arms and lower legs and had an X-ray and an MRI of the knee as it was inflamed and blood tests & physio by this point, finally at the beginning of February we had an appointment with hePaediatrician and they said they are not 100% but they think it’s CRMO! she still need more MRI scans but it looks like it’s this after reading up about it!
My illness has been wearing me down lately. Over the past week my invisible has become visible- my foot was fractured due to prolonged inflammation and bone damage and as a result I’m in a walking boot. What’s wild to me is the difference in peoples’ behavior due to my boot being visible. I think the gravity of my illness is finally dawning on my coworkers. While I’d rather not be in the boot, I’m thankful that people are offering support. I just wish people reached out to those with illness regardless of the visibility of the disease.
It was yet another rough day, I twisted my ankle yesterday and I got a really bad bruise on my right arm...my right arm is my strongest because I have CRMO in my left so it's around 9x weaker than my right so it's gonna be hard at school tomorrow to carry everything around with a twisted ankle and two arms in pain. I'm still stressing about how I'm more than likely moving to Florida with the guy who abused me for 2 years. The move got pushed into April, rather than summer, so not only am I moving, I'm moving towards the end of a marking period and in the middle of a semester which sucks because I was already having issues with school where I am and now I'm moving there where I'm not gonna have any clue what's happening in anything. I'm in pain, physically and emotionally, and it's difficult to keep going when you have this constant depressed mentality just telling you to give up. I'm trying not to, I'm trying to keep going, but it's like I'm carrying 100 pounds and climbing a mountain, and the weight just keeps adding up, my anxiety is absolutely through the roof, my depression is getting worse and worse by the day and I'm irritable and I don't wanna get out of bed and I just sit and cry alone in my room, I talk to my friends but I'm going to lose literally the only people that I have ever felt an actual friend connection to in my entire 14 year life. It's so hard...I just want to stop and lay here and give up but everyone keeps telling me it isn't an option so I keep going. I just have to think that they're right and it gives me a little bit of motivation to keep on, but as the date of me moving gets closer, the worse I get. I'm snapping at everyone and I don't mean to be like this but I am and it makes me feel horrible and it's making me feel worse about myself so my self-esteem gets lower and lower. This is just something that I can't do alone and I feel so alone, I come here for support and to support others when I can. I'm falling apart and I can't do anything but let it happen. I can't do anything about it and I just want it all to stop but it won't, it won't stop and I have to deal with it. I'm going deeper and deeper into a whole and it's getting harder and harder to escape from, this is truly horrible and I need to stop feeling like this before I make things worse than they have to be.........
I have #ChronicRecurrentMultifocalOstomyelitis (otherwise known as noninfectious osteomyelitis) and am hoping to connect with more people on here and educate about this illness. It causes my body to attack my bones and creates painful “lesions” like this one in my ankle where by bone looks moth-eaten. Will post more info soon but I’m so happy to be here.
It's an extremely rare bone abnormality, can cause extreme pain, and what one of the doctors told me make it break easier than a 'normal' bone would. I have it on my left forearm which can make heavy lifting, or lifting anything a pain, depending on the day.