Childhood Osteomyelitis, Long-Term Effects as Adult.

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A recent string of events have led me to investigate how osteomyelitis as an infant might have long-term effects as an adult. I've tried to do a little digging around the see if I could find anything, but I've found nothing so far that explains the effects over a lifetime.

As an infant I had osteomyelitis, which was taken care of. The past several years I've been experiencing pain in my upper left thigh while sitting for long periods of time, or even sleeping. I never thought much of it, but a recent talk with my mother made me wonder if it could be in any way related. The area in pain correlates to the place where I had it, and I have not had it looked at since it was taken care of as a child.

So, in short, I am just wondering if anyone knows of any lingering effects of the infection after it's been treated, 25 years after the fact.

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  • Posted

    I was just diagnosed with osteomyelitis in my jaw. As I thought back, I have had recurring pain in that area

    since 2011. I did some reading and found it can lie dormant. I think another article called them "flare ups".

    I didn't copy the references, as I was trying to scan as much information as possible to get a general idea of what I was dealing with.

    I don't have a 25 year history, but I am finding this potentially long-term condition to be serious.

    I go back this Thursday. I am going to push for an MRI, which I read is helpful. They took a culture in my

    mouth to determine the osteomyelitis. I have been on antibiotics since January.

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  • Posted

    I am always sorry to hear of anyone who has suffered with this painful and debilitating disease.

    Read my story 56 Years of living with Osteomelitis and its after effects, Part 1 & 2

    I still suffer with pain at the site of the original infection and take pain killers which do help to some extent, worse still are the after effects on the rest of your body that has had to deal with having one leg shorter than the other. My good leg as I like to call it has taken the punishment over the years and the hip in particular has great pain even walking only short distances. I also have a curved spine now which gives dreadful pain in various regions.

    I would not wear a built up shoe until I was in my 40s and that is what has caused that damage. I eas given a built up shoe when I was 15 but in those days it was a boot which looked and felt dreadful, add to that the bullying that came with it from the other kids in the school and that was the end of built up shoes until later in life,

    I have had 3 further attacks of this disease but knowing what it was allowed me to tell the doctors and not take no from them. Huge amounts of Antibiotics and hey presto within a week it has settled down.

    So in answer to your question Yes as after 56 years I still have pain at the original site and in 3 others since leaving hospital when I was a child.

    Good luck with it. Mike

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    • Posted

      Oldbluser your story is almost identical to mine. One leg longer than the other , hip damage on good leg .That's me . My pain went away for years during my teens to 20s but mid 30's hit me like a ton of bricks. The pain is still the same pain I had as a child with OM but there isnt any infection. SO WHAT'S CAUSING THIS PAIN ?? I really need to know if its nerve damage ? Osteoarthritis ? I'm using Fentyal pain patches that dont really work any more . What type of a doctor could figure this out as I have seen pain specialsts orthopaedic surgeons a rheumatologist .. Maybe a neurologist might give me answers ? I really don't know where to turn

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  • Posted

    Hi there I am comming up to 47 years of age this Friday. I got this horrible disease at the age of 6.having first been told by one doctor who came to see me at home, that I was a good actor and could get off the couch and dance around the room.then after my mum bathed my foot in radox bath salts the back of my heel was like the look and consistancy of blackcurrant jelly.I was visited again by the same doctor, who phoned for an ambulance and was rushed to hospital blue lights flashing. Anyway needless to say mine was late in being diagnosed, I lost the back of my heel and parts of my ankle.this disease has given me problems all through my child hood and as an adult.my foot stopped growing, my leg is shorter and thinner.my good leg has had to have a partial knee replacement.my bad legs knee going same way.my hips hurt and I have pain in my lower back.I have morphein patches but I still have pain.so from age six to present this disease has effected my life.
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  • Posted

    Hi elizabeth41115

    I am with you all the way. Your story almost mirrors my own in every fact.

    I think most people who had this illness suffered worse because we nearly all got diagnosed far to late with doctors thinking we were putting it on.

    Good luck with the future, at least we lived through it. Mike (Oldbluser)

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    • Posted

      Hi there Oldbluser,

      Yes I empathise with you all the way, miss diagnosed, heel made from my left inner calf skin, growth of right foot stopped at size 1-1 1/2. Leg shorter, leg thinner. Right ankle joint bones have become fused. Scars all over the show of both legs and right foot/ankle area. Knee ops. Constant pain and taking numerous pain medication, including morphiein patches. Massive impact on my life.

      Regards Elizabeth.x

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  • Posted

    This is so sad to read.  I live in Canada now, but I grew up in England, and at age 9 I had osteomyeltis in my right ankle,  Similar story, Doc said it is a sprain, go home and walk on it more.  I did, and a few days later my face started turning black and blue, and when my mother came home and reached over to kiss me, her coat brushed my swollen ankle, and the pain was worse than labour (and I have since had 2 kids!).  Rushed to hospital where 3 surgeries over 2 days were done (one without knocking me out as my system couldn't handle more anesthetic)  That one wasn't much fun. I dont think they ever needed that many people to hold down a nine year old girl before!  Leg was saved by GREAT doctors.  I do have some arthritis in that joint, but mostly when I wear not the best shoes. I have some great scars too.  wink  At 40 now, I do also have pain in my left (good leg) hip joint  I run, which probably isnt the smartest, and I overcompensate for my slightly gimpy right side.  When I run, I wear an insole in my right shoe to boost that side up the bit it needs, which helps  I'm not terribly lobsided, so it's all I need.  Reading this makes me sad though - I didn't know there were others.  I was always told how rare it was, and nobody has ever really heard of it.  The long term affects do bother me, and I wonder how things will change as I age.  However, we have to keep it in check right?  I am lucky as my leg was saved, and I can run, and walk.  I could have died, and it sounds like a few others here were in the same boat.  So we're lucky.  Everyone has something.  I worry about the massive doses of antibiotics I receieved, and if they could have damaged my kiver or kidneys.  Who knows.  I guess time will tell.  smile 
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    • Posted

      I'm now 39 and have struggled with fatigue and energy problems ever since getting out of hospital in 1986 following osteo myelitis in my right shin. I was ill for around 3 weeks prior to being seen by a doctor, and was in hospital for 10 days before diagnosis and remained for another week after that before 3 months convalescing at home. I had an adult dose of antibiotics and since then have had dark/black lines under my eyes that grow and reduce depending on how rested I am, but I always have a flu like feeling of fatigue. I've been suggested by several disciplines of health care that the dark lines point to kidney issues. I wonder too if my system is still trying to recover from the illness and treatment. I know at least two others a similar age to me who contracted osteo myelitis within a couple of months of me who lived in the same area. They don't suffer the same fatigue or suggestion of kidney issues. I'd love for there to be a full understanding of how this condition affects people, especially in the long term. I wish people well in getting over this condition. The key I think is early diagnosis, or consideration of the possibility of osteo myelitis, and for it not to be put down to malingering or attention seeking. Adults need to also understand that internally it takes a long time for children to rejoin their peers, especially for academic performance. Strong prescribed probiotics are a valuable follow up to antibiotic courses which destroy healthy gut bacteria too.  Another unanswered question is that I was told this condition was rare, yet in my case three children contracted the condition in the same small area in Autumn/Winter 1986. I do wonder if partly it was the heavy crop spraying in our area that year. I have memories of walking in the fields with family and my eyes stinging and mouth full of the taste of the spray in the air. There was also a pollution event in Ukraine at the end of April 1986 and I wonder if that might have contributed to susceptibility to illnesses like this, especially in children like myself at the time.

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  • Posted

    osteomyelitis is a nasty thing , my son had it some 14 years ago , as normal it was not picked up till it was cronic , 2 surgerys in 6 months , and has had a little problem last summer ,the antibiotics worked for him ,thank god .he still has pains every so offten ,when sleeping ,or tired , the cold , he now races a car and does got it knocked now and then ,but wont let this beat him or change his life in any way , ( one day it will as he gets older ) ,this can come back any time , you dont have to do any thing at all , but stress and damage will help ,keep an eye on it and if your worried see your gp ,do tell him why your worried as many gp s put it down to other things . this leading to why it is missed so many times , i was told that 1 in 10.000 got it ,hope this helps

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  • Posted

    hi there, quite a bit of what has been said is so like my experience. i am thankfull that i am alive and did not lose my leg.but as time goes on my mobility becomes harder to do.and my pain levels are worse.when i try to explain how i am or feel i know that it is met by some disbelieve.like you i have cracking scars, but its no just what the eye can see, the pain goes unseen,i would have loved to have been born in a hot country as heat eases it.was nice to hear from someone who lives so far away, but experienced similar to me.
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  • Posted

    I too had Oestiomyelitis when I was 10yrs old. I do remember the extreme pain in my left heel and the fact that it was 'Glowing' bright red, in fact .

    i was lucky to have been rushed to hospital in the morning following the sudden onset of pain the previous night.

    i have a 2 inch scar on my left heel where 2 ounces of poison was drained out of the bone in the heel.

    The Surgeon (Mr Bedows ) unbelievably had lost his own foot due to having had Oesteomyelitis !!  He saved mine and I have not really suffered too badly since , until about 8 years ago having had a prolapsed disc and the nerve in my left leg didn't repair all the way down to my foot . Now my foot hurts most of the time and although it's usually bearable, I feel that my heel feels like I am walking on 'Iron' and it's not nice- much worse when in tired. 

    David

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  • Posted

    I'm hoping someone can help because I would like to know as well. My son had ostiomotitis when staying at the NICU for 76 days. He was born at 29 weeks but was not born with ostiomotitis. I was first told he fractured his right shoulder? But how if he was in the care of the hospital? Then further X-rays and C SCANS showed a dark circle. They of course had no idea how he would have gotten it? and why would they automatically say he fractured his bone and tried saying it was because alot of pregnancies and child births come with fractured bones? Crazy I was not born with a fracture not my husband. My son turns one next year and we are scared it may be back, bcus he cries everytime we change his cloths?
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    • Posted

      Hi Jeanette, iv just come across this old post. How is your little boy doing 4 years later? When I saw you had wrote black circles on the x-ray , it reminded me exactly of the way my own Osteomylitis showed up as a young 5 year old . Back in the 1970,s the treatment for me was to cut out the infection on my shin bone .It kept reaccurinv until I was 9 years old when I finally had a drug shipped from America ( i lived in Ireland) That drug is still used today for chronic infection s it's called

      AMPICLOX.

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  • Posted

    I lve in Australia and had Ostia in my left leg when I was 2. A dr Lars operated on me. I have a scar from my knee to the an le. The bone was scrapped and infection removed. I was in hospital for 12 months and wore a iron calipar for about 3 years.

    i had another bout when I was about 11' and spent a couple of weeks in the Toowoomba hospital.about 3 years ago I had stones in the kidney and nearly went into kidney failure. I had a small sore on my shin and I was worried about it ulcerating. When they operated to remove the kidney stones they had  tropical medicine doctor look at my leg. Surprise surprise the Ostia had come back after 68 years.apparently Ostia is a very lazy infection,the reoccur acne was caused my immune system being weakened by the kidney stones.

    after 12 months on antibiotics dr Sugars operated and removed the dead bone 

    I have to be very careful with the shin as the skin is very sensitive like a babies.

    the legs fine , no pain, but I'm experiencing a lot of fatigue. Is any one else experiencing similar fatigue symptoms 

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    • Posted

      I've not suffered a recurrence of osteo myelitis since I suffered it aged 9. That's almost 30 years ago now, but it doesn't feel like it as I still feel like I'm surviving it. The main feature in my life since 1986 has been the constant fatigue which varies in terms of how extreme it gets. My 'batteries' go flat very quickly sometimes. People remark on how healthy my diet is when they see some of my meals, and I've done huge amounts of exercise, but since recovering and having the long course of antibiotics I've always carried extra weight, which has begun to cause extra wear and tear. I've also had issues with breathlessness and perspiration beyond what appears normal, so when compared to people much more overweight than myself I find I'm always left behind at the stairs despite apparently being lighter and fitter. Similarly when heating up even slightly my body will have what I can only call sweat 'crises' where it is as though a tap has been left on, when much more overweight people nearby will only be 'glowing' with a light layer of perspiration. These symptoms feel a bit like the mark of Cain. I've approached GPs sproradically to try and address these issues but find they're too vague to be something eligible to be looked into further. I thought I would try to describe some of these issues here as seeing others describe fatigue symptoms I wondered also if any of these other issues have been experienced by others. I do wish anyone suffering this condition, and recovering from it all the best, and I hope in the near future that medicine will be able to fully treat this condition to allow people to lead healthy lives free from mystery issues like the invidious fatigue that has followed me through life like an invisible ball and chains.

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