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Osteoarthritis Action

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Hello. New to the forum but not to OA. Thought I’d say hello and add my story.

Blackknight1989 profile image
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I posted this in another thread so I apologize if you have read it already. I did not pay attention to the length of time since the last comment so that post is buried toward the bottom. I enjoy research so I hope to add some articles or links to help all of us in our daily and sometimes hourly battle with OA and the pain of wearing out our bodies. I am a 54 year old male with poly-osteoarthritis and Stage IV CKD. Creatinine about 3.5 and eGFR of 17. But stable. Maybe that will add a little credibility to my early posts until I can prove myself. Sorry for the length! Glad to be here!

Bilateral hip replacements, bilateral knee replacements, bilateral ankle arthrodesis, AVN of both humeral heads, sclerotic L2-L4, degeneration of half the L5-S1 disc’s with vacuum disc syndrome, degeneration of the thoracic spine exacerbated by thoracic scoliosis, degenerative changes in C1-C-5 with nerve compression, AVN of the ulnar heads, and degeneration of metacarpals and metatarsals. 22 orthopedic surgeries in 23 years. I had my first knee scope in 1997 at the age of 30. First joint replacement of the left knee in 2003 at the age of 36, bilateral hips in 2008 and 2009, bilateral ankle fusions in 2012 and 2013 and right knee replacement in 2015. All surgeries before I was 48. They want to replace both ankles, fuse L2-L5 and place a cage, fuse C-1-C-4 with support rods starting this year. I will not do it. That is at least 5-6 years of 4-5 major surgeries with 6 plus month recovery times. I’ll go in a wheel chair before I do that.

My last 2015 knee I got hooked on the OxyContin for 2 years and put myself through a Suboxone clinic rehab in 2017. Will not take any more narcotics unless I am terminal. Now I am 54 and unable to stand over 15 minutes or walk a block. Also, have stage 4 CKD that is stable but I’m only counting on another 11-15 years.

I stumbled into a study in our medical school teaching hospital in 2013 done by an older orthopedic surgeon who started the study of athletes who had torn knee ligaments need a knee replacement before age 50. By the time I met him he had expanded the study into researching the severity of osteoarthritis in all age groups. His study concluded that osteoarthritis follows a bell curve with most people suffer from it in some degree if they live long enough. Those who showed no signs of the affliction in later life were only a small percentage of less than 10% and those who had severity like mine at an early age instead of late in life were also only a small percentage of less than 10%. While there are many factors like environmental, socioeconomic and general health, the largest factor is genetic. My DNA was analyzed and I was missing key factors that made me and others like me have severe poly-osteoarthritis with early onset. So luck of the draw. It was a relief though as I am adopted and know nothing of my biological health history.

So to answer the original question yes there are a few of us afflicted by osteoarthritis in nearly every joint. However, hold your head up as there is always someone out there who is suffering worse than you are and me too. Sometimes that fact and the wonderful support of my family are all that keeps me going!

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Blackknight1989
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HeronNS profile image
HeronNS

Hi, sorry to take so long to welcome you to the forum. You've had quite a journey. Thank you for sharing your experience. I hope you are able to live in some degree of comfort these days?

days70 profile image
days70

Oh, bless you. I found your post very informative.

RoxanneKidney profile image
RoxanneKidney

What do you do for the pain now?

Blackknight1989 profile image
Blackknight1989

Well not too much. I consider my CKD as my PRIMARY illness and as such, as you know, very careful with what goes in my body. I use heat and ice daily at least twice a day. Cane every day and wheelchair when I can’t walk either due to my ankles, hips or back. The idiopathic peripheral neuropathy is the worst as I have literally no feeling in my feet. That causes tremendous balance problems and I am deathly afraid of falling. Combine that with the fused ankles and if I don’t remember to pick up my feet any variation in “altitude” or smoothness of the walking surface, whether on the ground, concrete or asphalt, and I’ll trip over my feet.

But you asked about pain…ice and heat, I try to walk the dogs at least twice a day if possible to get in some movement, and Tylenol when it gets really bad…no more than 2 every 24 hours. I don’t sleep much, only a couple hours at a time but it is better than the narcotics! I have beat my share of addictions in my lifetime by sheer willpower but the oxys beat me. I didn’t have a mental urge like I did for alcohol or tobacco but the physical withdrawals from the narcotics were more than I could stand. However, about 3 months of Suboxone and I was good again. Luckily I have a fairly high pain tolerance but I suffer daily as many do. What I wouldn’t give to take an ibuprofen…lol!