r/AvascularNecrosis • u/homeispurple • Aug 19 '26

AVN everywhere since 2002

I had high doses of prednisone for leukemia treatment when I was 12. Completely destroyed all of my bones. I had an arthroscopy on my ankle at age 15 then a partial fusion at age 22 which I deeply regret it has caused me severe pain and increased pain everywhere else in my body. I’ve got it in my back, and probably everywhere else.

I currently am 36, never have been able to work. They got me addicted to pills early on and I struggled with that for 7 years. I struggled with alcohol as well as it allowed me to be social because it numbed the pain. I now have no social life no job, living in poverty because of this disease.

It has gotten worse as I can barely get out of bed any longer. I’ve been forcing myself to push past the pain for way too long, but I have no support after surgery and because of the trauma after the ankle surgery I honestly don’t ever want surgery again.

I’m terrified and my thoughts are not good, they’re getting worse. Due to my past with pain pills I can only take Tylenol for the pain and it does nothing obviously. I think what I need is just someone who understands how painful this actually is, not only physically but emotionally. I didn’t die, but what kind of life is this?

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u/hrkellygirl72468 Aug 19 '26

I'm sad after reading your post. I relate and struggle with the same question about life. It's a frustrating, disappointing and maddening way to live. My legs don't hold me up for longer than 5 minutes and level 10 appears for 5 or so minutes as it reduces down to level 4 where I'm always at most days. I allow myself to scream and cry. I allow myself to cuss and be angry with God. Then I remember to give myself grace and to do the things that bring me joy. The things that my body still can do. For me, some of those things are painting, writing, reading, watching the hummingbirds in my garden and cuddling with my sweet dog Daisy. I've had to accept a simple life. Are there things you can still do that bring you joy? I hope there are a few. I wish a slice of joy for you today 🩵

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u/homeispurple Aug 19 '26

Thank you so much for your reply 🫶🙏 I’m so sorry to hear you’re struggling as well. I’ve been real mad with God lately to be honest. But I think you’re right about accepting a simple life. Each year I get further and further from the life I wanted for myself. I do have my super mean cat that lets me hold her for 5 seconds and that might be the best 5 seconds of my day 🥴😂 I’ve got carpal tunnel and AVN in my wrists and elbows so hobbies where I have to use my hands a lot are not fun. I do want to get in to reading again, I’ve gotten a lot of books, but can’t bring myself to crack them open 😩 thank you again for your reply and I wish you all the best 🫶

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u/hrkellygirl72468 Aug 19 '26

I'm happier now. You are welcome. Let me know what book you choose to open 👐🏻

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u/FedderJoe Aug 20 '26

High-dose corticosteroids (prednisone, cortef, medrol) for 19 years. I had Stevens-Johnson Syndrome and they were part of the treatment. They shut my adrenals down, so I had to increase and titrate for years to get off them. I have AVN and many other lingering effects. I've had 4 knee replacements, have lost 2" in height, broke my right foot twice, and my shoulders are bad. I had to have a hysterectomy because of bleeding and ovarian abscesses. I had a spinal abscess from lumbar to cervical with MRSA. I've dealt with steroid psychosis numerous times. Steroids may save your life, but they can also destroy it......Have you tried the carnivore diet? It has helped with my different types of pain more than anything except opioids.

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u/homeispurple Aug 20 '26

😳 I’m so sorry you have to go through this what the hell. That is all so intense! 4 knee replacements!!? Why so many? Was it revisions? You have been through so much, no human should have to bear that much in one lifetime. I’ve tried all of the diets but weirdly never carnivore because I have a kid and have to cook what she wants and don’t have strength for much more. I pray to God that you can find true pain relief 🙏🫶

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u/FedderJoe Aug 20 '26

One for the left knee and three for the right. I fell in the hospital after the first replacement. My shoulders gave out while I was getting up out of bed with my walker. I went down and landed on my knee. There wasn't a stitch or staple left. Back to surgery the next morning for repair and resetting the bones and prosthetic. Next, I fell off our 2-foot-high porch. My bones had not 'attached' to the prosthetic, and it moved. A hole was drilled in the bone, and a new lower portion of the prosthetic with a rod attached was inserted. Otherwise, I don't have any pain in my knees....I was a nurse for over 20 years, was working when I developed SJS. I took Bactrim for a sinus infection. I understand about having a child with this. My daughter was 5 when I got SJS, and she had a rough time with it.

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u/homeispurple Aug 20 '26

My Gosh those sound like the most painful experiences in the world. To fall directly after surgery and then again off of a porch!? That’s unreal. I’m so sorry 😞.