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Extreme debilitating Hip Pain. SLE + More...
ssela81 posted:
I suffer from a number of auto immune diseases from SLE to Colitis. For years now I have had right hip issues that all doctors that I have been to cannot explain. The only help or advice I am given is to take pain medication and rest. I would love to be able to do that but I cannot when I have 3 children under the age of 7 in my care day in and day out.
When this problem occurs, there are no warning signs. I get "stuck" wherever I am when it happens. It feels like my hip locks up. The pain is excruciating. I cannot move at all because if I try, it hurts worse. I have my cell on me at all times and just a few days ago I was stuck in my bathtub. Embarrasing to have your mother come from her home 20 miles away to help you out. She was able to push me around in a computer chair (with wheels) to get me to the couch, gave me a percocet and ibuprofen and off to la la land I went.
Every doctor that I see has sent me for many tests which have come back showing nothing at all. I dont know what other tests to ask for or what else I can do to shake this. Its constantly on my mind if it is going to happen and when. I never plan anything because I never know if I will feel ok to walk that day. I just called my Rheumi today to ask her if she could prescribe me a wheel chair. If I use the computer chair, someone needs to push me around in it. If I had a wheel chair then I could do it myself and my leg wouldnt be "hanging" and making the pain worse.
Im at a loss. I dont know what to do. Im sick of being a burden on my family. I am 31 yrs old and feel like I really am 80.
lupylisa44 responded:
Have you yried a chiropractor? It may be worth a try!

With love, with patience and with faith, we'll make our way.
jujubeee714 responded:
It sounds like sacriolilitis! Esp with coilitis issues and lupus. It can cause inflammatory arthritis. It happens to me and I can barely walk and stand and get into extreme pain. It is inflammation in your si joint and effects your hips, pelvis and lower back near your tailbone. look up inflammed si joint and you will find more info. email me anytime as
halfpint6844 responded:
I had this same problem. At the time I was not diagnosed with SLE. It took 8 weeks and a MRI to find a femoral head fracture. The put 3 pins in and 8 months later I was still not well. They did a total hip replacement and when he removed the pins the bone fell apart. It never healed because it was not getting a blood supply. It took another 3 months before I was diagnosed with SLE. It was all due to the LUPUS. The ortho doctor originally diagnosed me with "clicking hips". After my primary diagnosed me I called the ortho and he said it all made sense now. Had he figured it out a year before he could have prevented me from all the months of pain which led to me losing my job, car and apt. I had to stay with my son until I recovered. I hope this is not what you have but I just wanted to tell you. I wish someone had told me. Please let me know what it turns out to be. After having the replacement and a year later I am pain free.
msbrich50 responded:
I have really debilitating hip pain as well and after several years of hearing there was nothing wrong I finally got a good Dr who ordered an mri and it showed I have avascular necrosis in my hips(dead bone) from all the years of high steriod use and being tappered off of it, if your Dr hasn't ordered an mri request that one is done you could be suffering from the same thing. I had my left hip replaced in October of last year because the pain was so bad I couldn't walk, sit, stand, sleep on my side or much of anything any more.
jujubeee714 replied to msbrich50's response:
I second msbrich50. Absolutely have an MRI. Get a referral to an orthopedic surgeon from your GP for the pain in your hip. An MRI should give you an should show inflammatory arthritis or osteoarthritis or necrotizing bone or bones fusing together...or something...there are nerves that control muscles over there also..
AND did you know that infection CAN cause sacroillitis? It CAN. It will NOT show up on an xray and you are prone to it with colitis! This may sound like tmi, but have you had unusual bowel movements before a hip attack? Do you get pain above the buttocks on either side as well as the hip? That is SI joint pain if you do. Well it very well could be. And only an MRI will SHOW IT. Not an xray.
Either push your rheumie to check for inflammatory arthritis and order an MRI or go to an orthopedic surgeon who will also order an MRI...
I wish you the BEST. We are in the same boat my friend.
Love Julie

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