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!

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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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I need HELP no doctor has been able to help they just push the pills that do not work at all they just mess up my head. I live in Reno Nv and need to be diagnosed. My grandma was the first known cause of elders danlos many years ago in Ohio. My 23 year old daughter is suffering with this too. Please offer me some guidance

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@josh42

I need HELP no doctor has been able to help they just push the pills that do not work at all they just mess up my head. I live in Reno Nv and need to be diagnosed. My grandma was the first known cause of elders danlos many years ago in Ohio. My 23 year old daughter is suffering with this too. Please offer me some guidance

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Welcome @josh42, I'm sorry to hear that your doctors don't seem to be listening to you. You mentioned that both your grandmother and your daughter have been diagnosed with Ehlers Danlos Syndrome (EDS).

There is a discussion on EDS where you can learn what others have shared and might find helpful:
--- Ehlers Danlos Syndrome - Who is the best doctor to see?: https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-new-diagnosis-1/

Do you think you might also have EDS?

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@josh42

I need HELP no doctor has been able to help they just push the pills that do not work at all they just mess up my head. I live in Reno Nv and need to be diagnosed. My grandma was the first known cause of elders danlos many years ago in Ohio. My 23 year old daughter is suffering with this too. Please offer me some guidance

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Hi Josh, I am in the same boat. Getting a proper diagnosis is very challenging, especially if have hEDS vs the ones that can be identified genetically. In Jacksonville, FL they have more Drs familiar with it. I haven't been able to get a proper diagnosis for it. That's why we are called Zebra. Drs are taught that if they hear hoofbeats then think horse. They forget about the zebras. Unfortunately, because I am young and "look healthy", then I suffer in silence. My quality of life has greatly diminished and it's a challenge to keep going. I hope the best for you and your daughter. EDS is truly awful.

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@angie8088

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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Angie, did the pain ever go away altogether?? Please I’m going through this with no underlining pathology or etiology as of yet. Non consistent bone marrow pattern etc. So, did it go away for you altogether??

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