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Undiagnosed Hip Pain

Posted by @traceface in Bones, Joints & Muscles, 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!

Tags: sports medicine, severe hip pain, hip, Physical Therapy

Deborah likes this

Posted by @contactbrady, Jul 17, 2011

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


Posted by @angie8088, Jul 25, 2014

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,



Posted by @traceface, Jul 19, 2011

Thanks for your help I will look into that I see my orthopaedic specialist on the 28th so we we will go from there


Posted by @bugs38, Jul 21, 2011

Was the MRI of just your hip?


Posted by @traceface, Jul 23, 2011

Yes I have had one MRI with Contrast
and I have have had an MRI Arthrogram of my hip


Posted by @bird, Apr 25, 2012

Yes he knew it was AVN and MRI confirmed it

Posted by Anonymous-2e77b698, Jul 22, 2011

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.


Posted by @bird, Apr 25, 2012

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.


Posted by @traceface, Jul 23, 2011

Currently we are looking into a sports hernia if it is not it than it could be adductor snapping hip syndrome which is more rare than abductor snapping hip syndrome.
I am currently waiting for a referral to the surgeon to see if that is what he thinks it is. I am still not sure!


Posted by @pinkfloyd2388, Aug 23, 2011

Snapping band you usually get a click or clunk have you asked about labral tears or hip dyplasia? Finding a good hip surgeon can be hard...


Posted by @traceface, Aug 23, 2011

We thought it was a labral tear and I had an arthrogram of my hip. My doctors are actually great they just do not have an answer


Posted by @flounder, Aug 23, 2011

I'm new to the community, but see many similarities between your situation and my experiences. I am also in my 20's and used to be very active. I was diagnosed as having a snapping hip syndrome two years ago and went through physical therapy for it..... we determined that it was not the appropriate diagnosis after many painful sessions of physical therapy.
The pain gradually got worse (extending down leg/foot and increasing in strength) and has continued for the past 2 1/2 years. I've been to four different states within that time frame and finally was sent to Mayo this year. I've had a hip arthroplasty and am currently in the recovery process. I'm glad the labral tear has been fixed, but my big concern is that the pain I've had for 2.5 years is still very present and no one knows what it is from. My gut tells me that it is related to sciatic nerve.... but I don't know. I even pondered endometriosis involvement.


Posted by @zildjiangirl, Aug 26, 2011

I was reading your post assuming you were older and then I got to the point that you're 23 and felt instantly connected to you.

I'm 25, my pain began at 20.

I've had even more procedures and drugs and therapies than you have with no results, I used to be active and otherwise healthy and have no family history or reason for my paralyzing pain!

Have you tried any stronger pain killers? I take a ton of oxycodone every day but it's the kind without Tylenol, so it's less harmful on organs and I will gladly become tolerant to oxycodone than lay in agony.

Do you see a Rheumotologist at all? Mine put me on Enbrel and I went from being unable to walk without crutches and needing help just to go to the bathroom to being able to walk without a limp.

Also -- did your MRAs show any labral tears? I had bilateral tears which was thought to be the cause of the pain but after two failed surgeries it's not -- but could be for you.

Now I am looking into Ehlers-Danlos syndrome with yet another specialist (a geneticist) because I have very hypermobile joints. I feel your pain, especially at our age. It may seem like you've tried all the meds but you have just begun, you may able to find a combination that works for you. I personally have been all the meds you listed and they all just felt like placeabos to me...abolutely no help.


Posted by @traceface, Sep 8, 2011

I saw two Rheumatologist Spring-Fall last yr. He was convinced with constant exercise and a proper sleep pattern I would get better. The medications they put me on originally changed me into a whole different person. I was forgetting things more than a 23 year old should it was scary. I had to taper off those medications. It has been a year now and still no answers. I recently tried Neurotin and Celebrex and those did not work but no other pain meds. One of my best friends has Ehlers-Danlos it is awful she has severe shoulder issues and every time she has surgeries they do not help


Posted by @traceface, Sep 8, 2011

I went to a surgeon who said maybe it could be a sports hernia but he has no idea. He said we could do a surgery and use it as an exclusion factor. He could not guarantee anything and was not to convincing so hear I am at page 1 _________


Posted by @traceface, Sep 26, 2011

I had a new doctor tell me he could do a sports hernia repair but does not know if that is what it is so he cannot promise it would not work. Why would I do a surgery on a guess???


Posted by @traceface, Dec 7, 2011

I went back to my orthopaedic specialist he was thinking maybe iliopsoas bursitis so I had another hip injection unfortunately it did not work. I have to return to my orthopaedic specialist we will see what he says.


Posted by @bethciowa, Dec 11, 2011

Lying in bed, in tears because my low back is hurting........... I am so tired of this!


Posted by @susannes, Apr 23, 2012

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.


Posted by @twins4ever, Sep 6, 2012

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 :/

Posted by @LeeAase, Oct 21, 2013

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


Posted by @twins4ever, Oct 20, 2013


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