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

Hi, My daughter is 17 with CRMO in the skull. We have been battling this for 1 1/2 years and my experience is that when theres pain there is active inflamation. My daughter is on Diclofenac, 75 , leflunomide and receiving Pamidronate infusions 1 per month which completely cuts her pain out! I have also struggled with no support group and I am always open if you would like to compare notes. We are located in the Atlanta, GA area, please feel free to contact me if you would like. Good luck to you and your daughter. This is not fun!

Hi,
My daughter was recently diagnosed with CRMO after initially being treated for what they thought was a staph infection in her femur. She has undergone two biopsies with debridement, months and months of antibiotics and must currently use a walker until her femur heals itself. The past 14 months have been so stressful and now I'm just always worried about my daughter's health. I would love to be in touch with other families in the U.S. currently struggling with CRMO.

I have a 13 y/o daughter with CRMO. I would also like to interact with other families with CRMO. 

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My son was just diagnosed with CRMO this week. He is 9 and has been in pain for 3 1/2 years. Being a disease that is diagnosed by process of elimination makes it so rough on families. We saw Dr. Polly Ferguson at Iowa City Children's Hospital and I really like her and her team. We are going to start an anti-inflammatory drug today. We were so grateful to at last have a diagnosis. My son has been x-rayed from top to bottom, he has had a bone biopsy, a bone marrow biopsy, an MRI and countless blood draws. It gets to be quite traumatic for children (and grown-ups!) to keep getting tested, poked and prodded and walk away with no answers. It is so frightening and frustrating not to know what is happening with your child as pain takes over their lives. We are very hopeful right now that we are on the right track. We live in Madison, Wisconsin.

This is my first time on this site, and my daughter ( 7 ) has also been diagnosed with CRMO in her mandible ( jaw ). I would love to talk more with you about your expereinces, etc. but I'm not sure how to reach you?

The most support I have found is from the facebook page CRMO.  Currently 347 members on this group site. 

Snap!

Ive had it since the age of around three the doctors guess, but from the ages of 3 - 14 they classed it as "growing pains", until I started having trouble walking!!

After they discovered what it was, and hadn't treated it in 11 years, I was in quite a bad way with it, and within about 2-3 weeks of it being confirmed I was in hospital having chemo too!

I find that now it has eased slightly, with the help of medication and also infusions every 4-6 months.

However, one thing I have found that does help release the pain is actually cannabis. I'm not your typically "stoner" preaching about it, I actually discovered its benefits whilst I was on holiday in Holland, after having a 'space cake' and a 'joint' the pain had eased dramatically and I barely noticed the pain, until I got back to the UK and stopped with the cake lol!

Im not saying everyone become a drug addict because obviously we don't want that, but I will say this, it isn't the bad thing that everybody thinks, and I would highly recommend that the people in day to day pain try it, as it really does help.

Just hopefully our government will get their heads out their arse and legalise the stuff for medicinal use!

Hi my daughter has crmo and I wld like to talk to someone else whose in the same shoes

My daughter has been diagnosed with Crmo. It's in 4 places- back, eft knee, collar bone and hip. She has been taking naproxen which has brought down the inflammation but is still wearing her back brace. The doctors now want to give her biphosphonates through a drip to make her bones strong. You mentioned you had crmo in your back. Did you have thus treatment? If anyone has, I would love to hear how you went before my daughter goes ahead with it. Thanks!

So sad to hear about so many people with this problem.  I'll share my story....I started feeling terrible pain on my right knee when I was 8 years old (I'm 35 now).  Visited many doctors, top doctors in NYC, NJ, CT, but nobody was able to figure out what was wrong.  My parents were told it was "growing pains".  Pain grew stronger and had knee surgery when I was 15 with no success, then again when I was 17 with no success.  I had developed cysts in my tibia and they would go in and remove it without knowing what was really the cause.  By the time I was 24 they diagnosed with with osteonecrosis of the tibial plateau, but with no idea what caused this.  I had major surgery (bone graft) at Hospital for Special Surgery in NYC.  After recovery of approximately six months I felt great from knee pain.  However, there was another new similar pain on my chest.  Doctors discarded the possibility of it being related to my knee problem.  Pain was on and off with crazy flare ups at time which drove us to the ER and then manageable for a period of time.  This has gone on until I had my second child at the age of 33.  After this pregnancy for the last two years, it has been agony.  I have had a million MRI’s, CT scans, and two biopsies.  They finally diagnosed me with CRMO with lesions on both my clavicles, my sternum and vertebra C6.  The pain is horrible!  I can’t sleep at night and I have two children.  I was on methotrexate for a few months, but I hated it and was scared to take this strong drug.  I’m now on Naproxen twice a day which isn’t ideal for my stomach but gives me a little bit of temporary relief.  I don’t know what else to do.  This disease is overpowering my life.  I go to acupuncture every week, but nothing seems to help.  Instead of going into remission, this disease keeps on getting worst with age.  At this point I try as much as possible to lead a normal life at least in front of my children and husband and I cherish every minute of it b/c I don’t think I can grow old with this disease.  I can’t imagine being old and dealing with this pain, this is terrible.  I feel and pray for every child/person going through this. 

I'm 19 years old and have had CRMO since I was 9. The doctors thought it was Brodes Absess and operated on me to remove that, but obviously nothing was there. I've missed out on a lot of stuff because of this disease, and kids in my school made fun of me and gossiped that I was making it up just because it is internal pain. Reading this forum helped me a lot, because I've never even spoken to someone else who has CRMO. You all make me feel less alone. I'm praying for all of you with this disease, or having family with this disease.

I have just been told I have CRMO at 52!! My heart goes out to you younger people who have the pain and discomfort. However are there any old people out there with this?

My daughter was diagnosed 3 years ago at age 7. She was diagnosed more quickly than most becuase her original lesion is in a weight bearing location and made walking unbearable resulting in quicker scans. I contaacted Polly Ferguson shortly after the diagnosis and the first round of treatments were not helping and she changed the course of her treatment tremendously but my daughter has yet to go in to remission. She has been on NSAIDs, methotrexate, & Humira. We are now on the path to start pamidronate but am terrified of the short & long term effects. Is there anyone out there that has experience - good or bad - with this treatment? This decision is weighing heavy as she has been prone to rare side effects with her other meds. She is also on a constant battle with the emotional toll of this condition. Having peers at school not understand why she is ok one minute and not the next. And honestly, I have struggled with 'friends' myself who just don't get it. So frustrating all around. We just want her to finally get some consistent relief and the studies I have read about pamidronate sound like the miracle we have been hoping. Any and all thoughts/insights appreciated!

-Worried Mom from Colorado

Hi my daughter is 15 and has had CRMO since she was 8. She is being treated st stanmore. She started off on Diclofenac, but has been on Risrdronate since she was 9. She has had flare ups over the years but this recent flare up which started 5 wks ago is the worst. She had an infusion 4wks ago but it did nothing, over Christmas she took Naproxen but it didnt really help She is still in chronic pain in her chest, spine and arms. She had an x ray yesterday which was good so its just a matter of managing the pain. She doesnt want another infusion as this didnt work so maybe going bsck to weekly tablet of risedronate. At the moment it is ibroprofen snd paracetamol. I feel so helpless and seeing her in this pain is killing me. It was good to read yours has got better though and hopefully hers will too. She would like to talk to someone about this and I wondered if you could do this.

Hi. I have a 12 year old daughter who was diagnosed with CRMO 3 years ago. After a month on Naproxen, she developed terrible GI issues. She was then diagnosed with Crohn's, which I'm still not completely convinced is accurate, because she has not had another GI incident since, but continues to battle with CRMO flares in one knee. Drs. want to try Pamidronate, and I was wondering if you have any comments on this medication and how it worked with your daughter.