Chronic Recurrent Multifocal Ostomyelitis

I was diagnosed with CRMO when I was about 9. Since they were worried it was cancer I didn’t get to know much at all. It affected my knees and I remember lying to my doctors at the age of 9 it was only one of my knees so they would believe me. They found 2 lesions on my right knee and 1 on my left. For a while after my diagnosis it didn’t affect me much. I have always been a huge swimmer to help with my EDS. It didn’t affect my sport for a while. I was one of the top swimmers on my team in my age group. I was humbled quickly with my shoulder pain. Again it was 2 lesions in one 1 in the other. I sat out a lot more and my coaches told me to swim it off. It destroyed me mentally to be treated the way I was. I had only 2 coaches on my team who understood what was going out despite explaining it over and over again. After covid I went to my club practices on occasion but quit during my high school swim season because I got lesions on both sides of my pelvic bone. I continue to swim on my highschool team and I’m currently coaching a summer team. Outside of being a student athlete. Most days I struggle to walk more than a block. I often use mobility aids like wheelchairs and crutches. I don’t want this story to be completely depressing and it’s not. reading through the CRMO # I see that a lot of you are parents. I promise it’s not all bad. I’ve been inspired to persue a career in health care to help kids with chronic pain and conditions. This world is not built for us but with a support group it is something that is easy to cope with. If someone you care about struggles with CRMO make sure to not push them to hard. We know our bodies limits. Tip: Fruits are great foods for inflammation- genuinely have been a life saver for me! #ChronicRecurrentMultifocalOstomyelitis

Hi, my name is Charliemagg. I'm here because
My 8 yr old son was recently diagnosed with CRMO and his first appt with rheumatologist is not til aug 31st the soonest available. Does anyone have any tips on how i can help ease his pain til then. Its heartbreaking#MightyTogether

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!
#MightyTogether

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.........

#Anxiety #Depression #PTSD #CheckInWithMe

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.