In 3rd grade i had my first encounter with this disease. I was sent to see a doctor when the teachers began to notice my limping. The doctors could not be sure what it was without taking out some bone to test on first. The possibilities were Oseteomyelitis, bone cancer, or arthritis. After surgery, it became apparent that I had Osteomyelitis. I had a pickline with was a tube that is put into your blood stream that leads to your heart. At the end of the tube there is a place to inject a needle that pushes in medicine that follows the tube to your heart and is then pumped through out your body. When I was just coming out of the 6 weeks of treatment I wrote in my diary.
First when i began to limp was on November 17, 2002. Right after my soccer tournament. I played one game but I didn't feel a thing. I think I had hurt my leg jumping on my bed. Than i began to limp and the week after Thanksgiving I went to my doctor, she tested my leg and said maybe it is just a pulled ligamint. So she sent us to get X-Rays, then we took a Cat Scan and I had bad stuff.
I went to the hospital for an operation. All I can remember is a tube on ur mouth, two breathes abd you are asleep. It was astio myolightous. (At the time i was finishing 3rd grade an did not know how to spell Osteomylitis) I had to have a walker but then i changed to crutches. I had to take some kind of medicine.
Than six weeks later through a pick line. When they put it in it hurt. I got off my crutches and was fine.
This is mostly the spelling that I used. I am glad that I wrote it down. Obviously I had no idea that it was so much more than just, and I quote myself,"Bad stuff in me." Also I nor the doctors knew that one day it would return.
I spent the next couple years of my life growing up. But than in sixth grade the time I had been running form finally caught up to me. This time more educated about the disease, I began treatment again. My infectious disease doctor, knew that to figure out what it is you must treat with some medicines and see how it reacts and only after many trials conclude that it is CRMO. This time the doctors chose to treat it with antibiotics. These medicines are used only to kill infectious germs, not inflammatory like CRMO. I was on a medicine in the family called Clyindomicine for 4 months. Sometimes it worked and sometimes it didn't, so it was hard to tell if my body responded to it. But after a while the symptoms stopped.
Late in 2007, this disease reoccurred. I was put on Indomethazine for at least 4 years to kill the disease. Along with many for pain and inflammation. So far they are working but off and on the pain comes back. Because now that it was been treated in all the other ways, I was diagnosed with Chronic Recurrent Multifocal Osteomyelitis. I hope that it never reoccurs again and I doubt that it will because now we are sure what it is and how to treat it.
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This is a disease of the bone. A bacteria attaches to the bone, the white blood cells attack the invader, over a period of time the white blood cells leave holes. This disease is a specific kind of osteo to which the pain occurs 3-4 weeks after onset. Other characteristics of this type of osteo are that it returns. It is multifocal meaning the disease is present in multiple places.
This is a disease of the bone. A bacteria attaches to the bone, the white blood cells attack the invader, over a period of time the white blood cells leave holes. This disease is a specific kind of osteo to which the pain occurs 3-4 weeks after onset. Other characteristics of this type of osteo are that it returns. It is multifocal meaning the disease is present in multiple places.
14 comments:
Yea i know how you feel, i also have multi-focal osteomylytis in my ankle, and small spots around my pelvis. Im one of the lucky people that have the disease becuz i rarley feel pain. But in a way im cursed, my ankle is the big compared to my other one in size, but my pelvis i dont have any bone growth at all. Occassionally i will get some aches but ussally its all good, My story was like this: I was on the bball team at school and we got to play the teachers, and i played the game without injuries. Next morning i woke up and i was in a crazy amount of pain. As the months progressed my pain started getting better. Diagnosing this disease was like hell. I Had about 25 xrays 4 mri's and a couple bone scans, and two byospis. I went to like 7 different doctors and the last doctor finnally figured out that it wasnt a fracture. My first surgery expirence was a bit scary. And my bone now looks like a kankle (Fat ankle)but whatever, as long as i can play sports and live the rest of my life pain free im happy. And after my last doctor biospied me and confirmed my diagnosis, i went to chilrens hospital in boston just to make sure. They agreed with him and they told me that this disease burns out. They said it ussally takes about 5 years and then its gone. The only suckish part is that im stuck with the fat bone it left even if it burns out. Ive learned to cope with it, its not that bad in my case. they told me that this disease is rare thats why nobody has tried to study it or attempt at a cure. But whatever ive learned to live with it. Thnx for making this blogg thing, its comforting to know other people will share their stories with you about the same disease they share. I apreciate it!
My name is Sara and I'm 18 years old. I found out I had CRMO when I was around 10 years old so forgive my foggy memories. I repressed a lot of my life before age 12 because of the pain from the disease. I was one of the not-so-lucky ones. I remember the pain started when I was around 5 years old... the doctors passed it off as growing pains and, to be completely honest, the pain was not that bad. It kept on getting worse until it got to the point where I could barely walk, and any time I did, I would cry, yell, etc. Also, my hips tended to pop and crack a lot. If I remember correctly, the doctors started thinking it was something else around age 7 and started doing blood work which only showed an increase in white blood cells. After about another month I had resorted to crawling to get around both because of the pain and my hips were too weak and would literally pop out of place. I had casts on both of my legs(the only place it ever was) and I had to get around on a wheelchair. I had just moved and had to deal with meeting new friends and this disease at the same time so it was very emotionally frustrating for me. I remember being in the hospital more days than I was in school, but only my parents memories tell me that the doctors thought I had cancer. They told them that they thought I would die within a year. I remember the pain slowly going away for a year, taken out of the hospital, and put in bootcasts since I had suffered several stress fractures. It restarted and they a biopsy on my left ankle. The entire time I was suffering from this disease, I also had gotten psoriasis and was dealing with psoriatic arthritis. They confirmed that I had CRMO at age 10, I think... and started putting me on different medications, none of which worked, and very few which I could actually swallow without choking. However, the disease "went away" on its own after another couple of years. I had to relearn how to walk because of this disease and I still cannot walk normally to this day, both of my feet stick out and I have a slight limp. I was wondering if anyone know the rate of it recurring in adulthood because lately I have been feeling strong pains in the same leg it had all started in. I was told when I was younger that not enough was know about it to decipher if it would ever come back again, but I'm fearing that it is. The pain is getting worse and it has been happening for about 2 years now. I also still have the psoriasis which is appearently a sign that it never really left. Can anyone help me? Thank you even if you cant, any little bit helps.
This nina magnuson and thank you two sooo much for commenting and sharing your stories. I hope that htis blog can be a place where all CRMO patients can talk, because its ahrd with no one else knowing where your coming from. Swing life away(etc) i hope that you are feeling better now and that you are playing lots of basketball. I know that now i am playing a lot of soccer. Sara, im so sorry you had to go through that it shows that although this disease is rare it is horrible and i hope this site can act as a support. To answer your question, in adult years CRMO can develope into a similar disease where acne appears over the affected areas. But i really hope this is not happening to you. One recommendation is that i take naproxen (nap-ro-sin) and indomethacine (in-dough-meth-uh-sin) you should ask your doctors about taking these, more and more doctors now are specialists and know more about the disease so now hopefully someone can help you. I hope this works and please keep commenting. Much love
-Nina.
Hi, I bumped into your blog and I was touched by your story. You're a strong young lady and I admire you for that. You will be in my prayers and I hope that everything goes well for you.
~hugs~
wow thank you so much that is soooo sweet. i hope all is well for you too. Thank you!
-nina
Nina; It's almost 2010, how are you now? Any better? Have you changed treatment or are you still on the same medication? Have you learned anything new about this disease? Wishing the best for you and your family.
L Brown
I know exactly how all three of you are feeling. I too have C.R.M.O. I suppose you would class me too as on of those not so lucky ones. I am now 19 and from the U.K. I started feeling pain when I was about twelve years old, this started in my shoulder, I soon was unable to carry my own school bag, after about 3 weeks it began in my neck I was soon unable to hold my neck up and it started tilting to one side, I kept visiting the doctors every 2 weeks, but each time he shrugged it off as being a pulled mussel. By 7 weeks I was unable to lift my head out of bed I had to literally get on the floor and lift it, I also had stopped eating. By this point my mother asked for an x-ray that I was given. Just before the x-ray I had an appointment with a hospital doctor, she was the first person to that looked into my eyes and believed that I was I in so much pain, (it was really her that notified other’s when I came to be in hospital, of how serious it was.) the next day whilst sat at home we received a phone call asking us to get into hospital NOW. Once there I was put into a neck brace and told not to move. It wasn’t for a couple of hours till we understood why. The x-ray had shown that my neck had somehow bent the wrong, also two of my vertebra’s had collapsed. Meaning I was mm’s from being paralysed, which is very scary for a twelve year old. After extensive tests and doses of antibiotics the pain I had suffered with had soon gone. I had the head consultant of the hospital dotting on my every test, x-ray and scan, within a week I was diagnosed with another slightly less rare disease Fibrous Dysphasia? I was then transferred to another slightly better hospital. Here I had the head of some department, who was in contact with people from around the world, and had a number of online conferences. In total I spent exactly one month in hospital, I was then discharged until further notice for a biopsy, however I was still in a neck brace but lucky all the bones were fused together. I was not aloud to do anything, so I was dragged to work with my mother. A while after the date was booked for the biopsy, that was done and I was then rather quickly diagnosed with C.R.M.O which was apparently the first case in records at the hospital. I still had to come back every few months make sure I was ok, I eventually got my neck brace off after they were happy enough to say I was safe. The only information I was told about C.R.MO is it may occur every year to year and half. There is no cure, only painkillers to help with the pain. I am now 19 years old and still suffer with it, I get sore necks if not rested well and if every I become ill and my immune system is down I get more pain (mainly in my neck.) In total they have said I have had it in my hips, neck, shoulders, rib cage, lower spine, back and knees. I am so glad I have founds this site, it has been horrible having know-one understands or believes me in some cases. I really hope this helps someone just like it has for me, now I know I’m really not the only one There is one good thing to come out of this; I now have an amazing posture that some people would die for. Laura
My 16.5 year-old daughter just had more MRIs of her ankle and lower leg, and the tentative diagnosis is CRMO. She seems to fit the diagnosis. No injury, recurring and exacerbating pain. She had an MRI last yr after a year of worsening pain, and her issues were attributed to growing pains (sequale of metabolism in medical terms). These MRIs are worse.
So now we move on the blood tests, maybe a bone scan, or more MRIs. I'm hoping that Children's Hospital in Seattle has a good rheumatologist. My mother, her grandnother, has psoriatic arthritis.
1 in a 1,000,000. Damn. She's trying to run track, is a really good runner, and loves to run.
Sue; My daughter is at Children's in Seattle. She has CRMO.
Have any of you noticed the study being done at the Univ of Iowa?
http://www.uihealthcare.com/depts/med/pediatrics/pedsmds/ferguson_research.html
L C
L C wrote:
Sorry, I can’t remember my password so I signed in anonymous. My daughter is being treated at Children’s Hosp in Seattle. She says she’d love to meet you all on FaceBook.
The research link I tried to post last night was cut off, so if you’re interested in following it here it is again, or just search “Univ of Iowa & P Ferguson” Everyone in my family is hoping her research leads to a cure or at least better treatment for CRMO.
http://www.uihealthcare.com/depts/
med/pediatrics/pedsmds/
ferguson_research.html
I have a question, do any of you have siblings, nieces or nephews with CRMO or something like it?
L C Brown
Dear Laura and others,
I am so sorry to hear about what you had to go through first of all. This disease beyond being painful and scary can also make one feel very alone. I hope that others will find solace in this blog and will feel comfortable sharing their story. When researching this topic it was difficult to find others who have even heard of it. All of your stories have touched me so much. Laura, when reading yours I began to cry. For the mothers who commented I am sorry I cannot be of greater assistance than to say that I take 375 mgs of naproxen and 25 mgs of indomethacine twice daily and this takes away almost all pain and swelling. I hope that this information might be able to help your daughters. Recently I underwent surgery for what I thought was a torn meniscus, the surgeon realized that it wasnt only after performing the surgery. He did remove a large amount of fluid that was stored in my knee, possibly the reason foor my pain. This could be realted to CRMO, I am unsure. But this only reiterated to me that this disease, because of its rarity can be very confusing and leaves one uncertain of the possible recurrence in the future. I hope all is well for you and I hope your daughters and Laura will find that life exists beyond this disease and although it took me years to realize, without this disease I would not have learned about perseverance, or to appreciate little things like being able to run pain-free as much.
i am 27 years old i was diagnose with chronic multi-focal osteomyelitis when i was 7 i have noticed when you get into adulthood that the pain gets more stronger and it also spreads more i only started in my right leg now its in the right knee, left leg, ribs/lungs,nerve system,stomach and heart because i am now finding it hard to walk anywhere my doctors have put me in an aged care facility to make it easier for myself as i am on like multiple meds for it.
I am wondering has anyone notice that too that the older you get with it the worse it gets.
The infection diseases doctors tell me alot of people don't make it past 50s with it because of the way it spreads.
i had every single operation done on it and every single antibotic and inflammation tablets on the market
Just come across this site, Ive had CRMO since the age of 8, and im now 20. Who the heck said you dont live past 50s????????? Ive never heard of that. Sounds like scaremongering to me. My consultant in London has told me that signs of the illness should reduce as we age. Ive just recently started getting terrible aching in my rib cage and back in the evenings, much like how it started out with my legs when I was much younger. I cant see the disease doing much other than causing aching, at least in my case. Although I have heard that it varies in people. CRMO is normally in kids and can affect people in different ways. As everybodies experiences differ so wildly, its hard to pinpoint. A lot of people describe it as an illness you are diagnosed with when the doctors are left with no other diagnosis. I dont know. My stomach flipped when the previous comment said you dont live beyond 50. Not a nice comment to read.
I am 26 and was diagnosed at 10 as well and it has came back with a vengeance unfortunately. Horrible pain. And now living in Idaho from California no one here knows enough to do a Damn thing. I'm sorry to hear about the pain coming back, it is really crappy.
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