How Osteomylits has affected people as they grew older .

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Hi, Having had Osteomylitis as a young child ( left shin ) I would be very interested to know how it affects people as the years go on. I am now 52 years old

For me , even though there isn't any sign of infection I have been in contact pain .Strangely not in the infected area but in my left leg. This horrible aching throbbing pain starts in my thigh and radiated down through my shin and into my foot. Its so bad that I have been on Fentanyl patches ( Durogesic DTrans 25 ) for years. This does not take the pain away but dulls it down. No one can tell me why I'm in pain . It's not fibromyalgia . Having seen numerous specialists, they have all said that this pain is NOT from having Osteomylitis as a child but I really beg to differ. No one can tell me why I'm in pain all the time . What has your long term effects been and what medication, if any ,have you found helped .

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  • Posted

    Hi there, i am 51 in April and have had it since the age of 5/6 years old. I am disabled. It was in my heel and ankle joint. I am in constant pain and i have fentanyl patches plus two other pain killers. 

    Any bit of cold to around my legs and im in agony. My leg is shorter than the other, its thinner, my foot is only a one and a half and i walk with a limp. I would say that it has had a massive impact on my life, my quality of life. 

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    • Posted

      Hi Elizabeth, thank you for your reply .Firstly ,let me say I'm so very sorry you are in such pain . Reading your reply it could be me that wrote it as it's the way i am affected now. Can I ask you if you have had pain in other areas of the affected leg and not where you have OM. And have you had a diagnosis that this pain is from having Osteomylitis as a child ? Reason I'm asking is, I don't have pain in the shin area where I had my OM but have terrible pain above my knee radiating down the outside of leg down to my foot . All the consultants I have seen ,have told me there is no way this pain is linked to having OM as a child ,yet they can't tell me what's causing this pain...If I could at least get an diagnosis for this pain. I could deal with it better . What pain killers are you taking.

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    • Posted

      Hi there, i had some risidual in my left leg calf area that kept swelling up as my heel onmy right foot was sewn into the calf on my left leg. The problems are definitely to do with OM. I am on Dosulapen and pregabalin. And fentenyl patches, paracetamol and ibruprofen. Hope this is of help to you x
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    • Posted

      Hi Elizabeth, thanks so much for your reply. I am going to look into the medication you have mentioned, I'm not sure where you live but I'm in Ireland and the meds you mentioned are probably sold under a different name here. It's actually comforting to talk to someone who understands the pain we are dealing with . Regs Linda

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  • Posted

    I had it in my left toe at age 7. I have had several spinal surgeries with no improvement. I have been diagnosed with arthritis in left knee. I had swelling from knee to ankle for 2 weeks and pain. Now am having horrible pain in my same heal. I just started thinking the osteomyelitis might have something to do with it. I have chronic pain& chronic migraines.

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  • Posted

    I fought this disease my whole life from the age of 13 to the age of 48 going through multiple debridements I refuse to let them amputate my leg. The diseases now dormant after finding a surgeon who did a muscle flap packed my leg with antibiotic beads and put me on 6 weeks of antibiotics just put it in remission. The pain never goes away I have looked into what is called complex regional pain syndrome. most doctors have never heard of it nor were able to diagnose. when I told other doctors about this syndrome I was pretty much pooh-poohed buy them. I finally did get a doctor to understand what complex regional pain syndrome was and they understood and it went into my record as having it. this does not help with the pain but at least I can show any doctor that I have to go to in the future that this is not something in my head that it's an actual syndrome that is affecting my ability to function I can show any doctor that I have to go to in the future that this is not something in my head that it's an actual syndrome that is affecting my ability to function

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    • Posted

      Interesting story Leslie. I am 43 and had it in my upper femur since age 12. Similarly several debridements but no luck, always returned. Like you I have refused amputation. Would you let me know how I could reach your surgeon?

      As for the pain, I had incredible pain for about 10 years from onset till one day in utter desperation I prayed and it (pain) just vanished never to return. I know, weird but true.

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