Undiagnosed Hip Pain

Posted by Traceface @traceface, Jul 10, 2011

Ever since October 2009 I have had severe hip pain. I have been limping for more than a year and a half over this past year I have gone to physical therapy for seven months. It helps with ROM however it does not help with the pain. I have been continously passed on from specialist to specialist with no answers. The last specialist I am seeing has said he is excited some one sent him a legitimate case. I have had many test done trying to figure out what is going on:
MRI/MRI arthrogram/Cortisone Injection/X-Ray/Bone Density/numerous blood tests.All have not given us any results.I have tried many medications to help with the pain:Ultram/Flexeril/Neurotin/Celebrex/Ibuprofen/Acetominophen/Lyrica/Savella/Elavil still nothing has helped. I also have sharp pain in my arms and legs off and at times I have a hard time keeping fluids down and on and just do not have the stamina I used to. I am only 23. I am dedicated to going to the gym even though it hurts. No matter what I do the pain is still there. I have difficulty walking up stairs. It is hard going from being an athlete to not being able to do what I love. I have severe gait issues where my left foot goes inward in to compensate for the pain. I did not know if anyone out there has any ideas of things I can look into or try. At this point I am searching for any ideas or suggestions!

Liked by Deborah

Let’s start writing to each other-when I read your post, it’s as if it is my story-mine since sept 2009. I have chronic B/L hip pain. Sometimes my feet and hands hurt, but, it is mostly in the hips. I have seen 17 doctors/specialistsand still have no working diagnosis.

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@julz777

You could have avascular necrosis. Most docs do not know how to diagnose this or see it on xray. You may want to see an orthopedic specialist who specializes in AVN and knows how to treat it.

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I agree. I thought I was seeing an orthopedic dr for an osteo a hip replacement. My dr saw something on the x ray so a MRI was performed and AVN was found on top of both ball joints in my hips. I was over the usual age. There is a list of items that can cause it. I had none. Next I had core decompresions on each hip to first relieve pain and pressure. Also a hole is drilled in the bone. This is to promote bone regrowth and new blood vessels to bring more blood supply to the head. My left hip was really bad. After two yrs I needed full hip replacement. This was in 2004 and replacement on 2006.. My rt hip has held its own and has stayed unchanged. I was 61 yrs old and I am 67 now. I also have o/a and r/a as well. I also have connective tissue issues. So now I have joint and muscle, ligaments etc as well.
I don’t know if this helps anyone.

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@bugs38

Was the MRI of just your hip?

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Yes he knew it was AVN and MRI confirmed it

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HI I’m only 17, but i’ve been experiencing pain almost exactly the same as Traceface…One problem that they did find was that i had endometriosis, this didn’t help the pain and did require surgery but it can have permanent effects if gone untreated. I just feel so alone with this because the pain has gone on for OVER 2 YEARS! and its driving me crazy, and nobody wants to hear about my hip anymore. If anyone gets any more ideas please post anything! Seeing my 18th dr. monday :/

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yes?

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yes?! 🙂

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@twins4ever

HI I’m only 17, but i’ve been experiencing pain almost exactly the same as Traceface…One problem that they did find was that i had endometriosis, this didn’t help the pain and did require surgery but it can have permanent effects if gone untreated. I just feel so alone with this because the pain has gone on for OVER 2 YEARS! and its driving me crazy, and nobody wants to hear about my hip anymore. If anyone gets any more ideas please post anything! Seeing my 18th dr. monday :/

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I’ll be in touch with you via private message.

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@contactbrady

Hello there. So sorry to hear about your pain, etc. I suffer from something that may indeed be exactly what you have (very rare and little medical info to be found unfortunately)…Google this: Bone Marrow Edema Syndrome (BMES). I’ve had it in my ankle for two years (extremely rare in ankle, but most often occurring in the hip). A drug called Iloprost (spelling?) is often used to improve blood flow/reduce pain. Find the best Osteo practice in your area and insist on a doc with BMES knowledge/experience. It took me SIX doc’s to find one who even knew what it was. Good part is that although it can reoccur, it does go away with time. All the best to you…~Brady

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Hello. I am wondering how you all have fared over time. I was just diagnosed with bone marrow edema in my foot yesterday. I have not suffered nearly the length of time that you both have, but it has been two months of excruciating pain with no relief in sight. This has very much had an impact on my quality of life. I’m in a walking cast now, which takes some of the pressure off of my foot during the day, but the pain is always there. So, at this point I am trying to compartmentalize the pain (ignore it as much as possible) and go on with life as usual, which is hard to say the least. I have a small child, and very much wish I could return to my normal active life. I hope you two are doing better.

All the best,

Angie

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Sometime I have the same pain in my foot

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