Comments and reviews on article "Chronic recurrent multifocal osteomyelitis (CRMO)"

Hi, my daughter has been suffering from this since she was 6, now she is 9, just got out of the hospital with this diagnosis. Reading everyone's posts on here is the same thing she goes through. As much as I read about this I still don't understand. Why? As a mother of 5 children, they have all always been healthy. I've never done drugs or so much as taken a tylenol while pregnant. I am left stumped with "What did I do wrong as a parent" syndrome. My heart breaks for all the pain that you all are feeling. Hers is in the bottom tibia bone. What causes this or is it just a mixture of "bad bones in both sides" genes that affected her? I have MS, her dads side is full of rheumatoid arthritis, mine degen. disc disease as well as severe arthritis. I am wondering if anyone can help me or if I can help you figure out a common connection in this disease? :idea: :idea: :idea:

My daughter age 10 was diagnosed with CROMO last year. What we found out from all this time and research was (how can your child deal with pain management) this sound's crappy from a parent that wants’ to hear everything will be fine. Here is a pill and they will be fine in a week. This is not the case!!!! My daughter was a very active girl that played hockey, soccer, dance & bike riding. She fell down in hockey and fractured her L2 verbra. 4 weeks in a corset and then she was complaining about pain in her ribs and back. She was prescribed Tylenol codeine because of the pain. Went back to the orthopedic doctor and they took some more x-rays with nothing to report. They scheduled an mri on her ribs and right leg below the knee cap. Was referred to u of m oncologist, set up for complete body scan, blood work, mri on leg, ribs, & back and a CT scan. Next day doc call and tells us that she most likely has cancer. a biopsy is tomorrow and we need to think about a in or out port to be put in and a bone marrow will be taken also. "All this from a fall in hockey" now it's cancer. There goes our whole world. After surgery the initial biopsy was negative and she was able to go home. She was in extreme pain and was put on oxycodone. We were referred to a rheumatologist at U of M hospital. They stated that 1 in 1 million youths girls get this. Out of 3 cases 1 will be a boy. She was started on prednisone for 1 week and naproxen (500 mg) twice a day. In 1 weeks time she was as good as new but with a cast on leg from biopsy. 3 months passed by and no systems. Then she was getting tired, crabby and stating her side was hurting her. Started her back on naproxen (500 mg) twice a day but you must have this with food a must!!! and you wont have problems with your stomach and liver. Then after a month straight on meds we took her off and she was fine again. NOTE (NO PHYSICAL CONTACT) she doesn't play hockey anymore but she plays school basketball, horseback riding, & physical therapy. We bought the WII Fit this helps out with her stretching and being active. She has to stretch every day and has to get 8 hrs of good sleep to feel good for the next day. The doctors say this will tone down after puberty. (The cause of the inflammation of the bone due to the body was fighting or fixing a hurt/injured part of the body. now immune system can't recall the helps and they attack the bones to make them inflamed). Like I said “all about pain management”. She has a strong pain tolerance to keep playing sport that makes her feel like a kid still. She won’t let this stop her from having fun but this will take a toll in the evening with the pain from over doing it.
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Hi. I was diagnosed when I was 10 and now I'm almost 21. I've had to give up a lot of the activities I used to enjoy because as a child none of the medications helped me very much. As of the past couple years I have less flare ups but I still suffer from chronic pain. To those of you who's young children are suffering from this illness let your child decide what physical activities they can do. From experience and this is a problem I still have especially from work; the only one who knows what they can physically do is the one who has the illness. When I was 10 and was diagnosed I was upset I had to give up what I loved and when I was told I couldn't do something because of it I was beside myself with grief. Anyhow enough with my rant I hope that those of you with children who suffer this illness are one of the lucky ones where the illness just kind of stops unlike for me.

My daughter, age 9, was diagnosed with CRMO a month ago. We believe she has had it for about a year. She spent the majority of the summer being hospitalized, undergoing biopsies (5 total), bone scans, CT scans, bloodwork and MRI's. She recently started on Naproxen and Prednisone, which seem to be working, but her stomach is a mess (she just started Prevacid, but it doesn't seem to be helping at all). The biggest thing I have noticed is how tired she is and her moodiness. Has anyone had the same experience, and any luck in finding a way to get the energy back? If we allowed her, she would be a couch potato 24/7. She has put on quite a bit of weight over the past few months because she doesn't have the energy to do the things she normally did before, and I'm worried that this may create additional health problems. Luckytigger5 - you noted that your daughter had rib pain. Did they find any lesions on her ribs? Our daughter has been complaining of the rib pain too, but no lesions have been found there. She has 2 in her foot, 2 in her spine and 2 in her sacrum. It has been helpful to read what other people have written about this disease. Thank you for sharing your experiences!

I have CRMO

Hi I developed CRMO when I was 10 I had a fall at school breaking the ball socket off my shoulder damaging my hip I am now 21 and have got more pains in shoulder hip chest heal, I have taken steroids naproxen pain killers co codermol everything you can think off in and out off hospital physio but nothing seems to work there isn't really any doctors that know about the condition which isn't to good but what can you do I find the cold weather seems to make it alot worse

Im 18 and was diagnosed at 11. I still have CRMO. I thought it was getting better and joined the gym at university. I could only walk on the treadmill briskly for 15mins. two days later, and i cant move without pain. I havent felt this bad for years. 'Remission in late childhood' doesnt seem to be the case for me.

I was diagnosed with CRMO when i was 10, im now 19. Still to this day i have flare ups here and there. When everything started it was first in my left ankle, then my lower back. There were days where i could not get out of bed until 1pm because it would take me hours to just set up in bed. If i moved too fast or was startled by something i could feel the pain shoot through my back. I was on and off of so many medicines for infectious diseases and nothing worked so they ended up treating it like arthritis. Once i was properly diagnosed i was put on Naproxen, and still take it when im having a flare up. But the when the weather changes is when my pain is the worst, and it never fails.

Hi, I am a 12 year old female and I have been diagnosed with CRMO recently... since April i have had back pain... they first thought i had Cancer and now they think CRMO. I and my parents know the frustration you are all having... trying to get ahold of doctors, getting medicine, shots! I hate shots and needles! We would love to read more posts getting to know more people with this same situation. I have only recently gotten it and now worry how long i will have it seeing all the teens post how long the've had it..... also does any one have any tips to needles and ivs and how to make it easier???? I am starting a new shot tommorow called Humaria... at home i take Naproxen orally and it seems to work and help my pain.....  I had a Broviac in when they thought i had cancer and it was nice to have so i wouldnt have to get poked... now that it is out it is nice cuz now i can swim which i love doing and seems to relax my back! I wish tons and tons of luck to you all and i ask for advice! thanks! :)   Katelyn, 12 yrs, ca, sacremento area :)

Hello,



Have you ever tried Pamidronate treatment? My daughter 10 years old also has CRMO and I am hoping Great Ormond St take our case as the hospital I go to now doesn't have a clue on the condition. It's very frustrating.



There is a page on Facebook for CRMO sufferers and parents of children with the condition.



Any information will be greatly received. Thank you x

There is a Facebook site for CRMO that is wonderful and so supportive as well as an organization called stopcaidnow . Both have been invaluable to me. Good luck and god bless. Xo

I would like to discuss this with you as my child has CRMO of the skull only. I have not been able to find anyone else with this condition on the skull. Can you give more specific detail of your skull leisons and what therapy you received for them. My daughter is 16 and has only been diagnosed for 3 months.

My son is 7yrs old and has recently been diagnosed with CRMO. His bone scan showed uptake in 5 different sites - clavicle, sternum, spine, pelvis and femur. He constantly complains about severe pain in his knee, yet the lesion is not in that area, which is very confusing. To date, his pelvis is the only site which has been asymptomatic, yet that is the site they chose for the bone biopsy? We are finding CRMO a very frustrating diagnosis because there is little knowledge about it, and thus far he is not responding well to NSAIDS or even opiates. His mobility is greatly affected, and he has missed many months of school. I find he is extremely anxious about anything that may cause him pain, and even trying to walk at the same pace as others causes him much anxiety because he is in pain. We are meeting with the Rheumatologist/Immunologist and the chronic pain team this week, and they want to start him on steroids. We are in Australia, and have a great medical team at a children's hospital in Sydney caring for him. It is reassuring to find this board with other kids and parents managing the same condition, because I have found it is easy to feel alone in our struggles sometimes.

Hi am so sorry, i sm your age and i ferl the same way, i just wish i didnt have crmo.

Hi Cat,

My daughter age 5 was diagnosed in Sept. 2012 with CRMO. I can't seem to find any kind of support group either. My daughter's pain seems to have increased with the cold weather and was wondering if that is something you or other parents with CRMO children have experienced? She takes Naproxen for pain and inflamation now but when she was first diagnosed she was on Prednisone. Any tips or response appreciated.

Thank You!
Amy P. in AZ.