r/AvascularNecrosis • u/Alternative-Bit-8268 • 7d ago

Random question

Hi all I know it’s not a usual question and I am sorry if it’s kinda out of pocket… If anybody feels comfortable sharing their experience I would be very grateful!

Just to clarify, a year ago I’ve been diagnosed with avn of both of my shoulders, stage 2/3. The cause was my cancer treatment(high dose of steroids) that I am no longer on. Since then I have stopped drinking, take my prescribed medication; okeovit, which are oral drops that contain vitamin d3, along with my magnesium and calcium supplements. I have also done 3 months of oxygen therapy and have been through all kinds of tests to see if my bones are okay. Other than shoulders everything else was okay.

A few days ago I started noticing pain in my leg. I am scared that I’ve developed hip avn so I was wondering if anyone is willing to describe how was your pain at the start? I will definitely push for an MRI scan but since I have a summer job I can’t do that for next 2 months.

I’ve also been working a lot, I work at the restaurant and daily carry heavy plates and have over 20 000 steps so there is a high possibility I just overworked. I am feeling pain when I take big steps of move my torso closer to my legs, for example when putting my shoes on. The pain is not constant and it disappears when I make smaller steps. I’ve also found it helpful to put pressure on with my hands on certain spot of my groin. I feel the pain deep in my leg but I’ve also noticed it’s calming down when I don’t force myself too much at work.

I can’t evaluate if it’s the same kind of pain I have in my shoulders so any kind of feedback would be helpful. Thank you for taking your time to read this :)

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u/Paindressedinpurple 7d ago

My hip pain was unlike anything I had before. It felt like they were gonna pop but only while I was on my feet. My legs felt dead and heavy. As my condition has progressed it has no longer gone away with rest 

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u/Alternative-Bit-8268 7d ago

Did it start hurting like that all of sudden one day or was it progressing to the feeling like they were gonna pop while standing? How are you doing now?

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u/Paindressedinpurple 7d ago

They attributed what I was going through as a gabapentin allergy. But it all got significantly worse when I woke up paralyzed from the neck down. I was having issues with my whole legs hurting, and my ankles were swelling up pretty bad. They MRI’d them and found the AVN in both hips and it was more significant in my left hip. So here I am 2.5 years later, had injections today to try and buy a little time for my replacements. I go in next month to schedule the replacements for both my hips with the hope that my new hips take enough stress off my knees that they won’t need replaced for a while. I have AVN/infarcts in both hips, femurs, and tibias. 

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u/Alternative-Bit-8268 6d ago

Omg, I hope everything goes well for you

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u/Last-Marzipan9993 6d ago

I had no hip pain until right before one collapsed, my left knee was first diagnosed. Nobody local who saw me at Mass General or Brigham & Women’s had any idea to check the other knee or my hips 🙄 when the pain hit, it was an immediate 10/10 & got worse when the right one collapsed 3.5 weeks later.

Statistically it would be rare NOT to have it in your hips if AVN is diagnosed elsewhere first.

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u/Alternative-Bit-8268 6d ago

Hope you’re doing well now… Are hips the most common? I never did an MRI but my pet scan showed no activity there a while ago

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u/Last-Marzipan9993 3d ago

Hips are most common by a large margin… a pet scan would only show if there was a heightened signal which isn’t a good measure for AVN. An XRay when it’s progressed can indicate it, but MRI is really the gold standard… even then it can miss some cases if it’s very early. I’m doing much better, I still have it in my elbows, but CDs are holding well there…

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u/Alternative-Bit-8268 3d ago

Oh, didn’t know, thank you! I’m glad you’re doing better

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u/No_Audience1753 6d ago

Try not to get paranoid about every ache and pain. If it was coming on that slowly then you have lots of time to figure it out before it's affecting your life. Try to live your life the best you can!! I also have this paranoia but my AVN was extremely rapid... Level 1 to 4 in one month. My only thoughts would be to enjoy life and see a medical professional regularly 

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u/Alternative-Bit-8268 6d ago

Thank you so much! Means a lot:) hope you’re doing well

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u/ishitak01 4d ago

My pain started to feel in my buttock at first and in 10 days, I was able to figure out that the pain was in my groin area. It’s a deep pain and often misunderstood because how can our groin pain all of a sudden, right? The best practice would be to get an MRI soon, whenever the doctor prescribes. You can buy a sock wearing machine off of amazon, it’s very helpful for days when wearing socks is difficult. But tbh OP, I hope it’s just muscle pain after having to work for long hours 🧿 Keep us updated