Hi friends. I have had SLE since 1987 and I am now 44. Between the steroids and the disease I have had a lot of joint damage. I have Avascular Necrosis in my right knee ( left one had a total knee replaacement), I also have AVN in both ankles and now I am pretty sure it is in both hips. The pain is not just in hip itself but shoots into my leg and groin area. My shoulder joints are messed up and somedays i honestly can’t come up w/ one joint in my body that doesn’t hurt!!
I have a script to go get the MRI for my hips and i just cannot get myself to go. I guess the thing that trips me up is - what difference will knowing make? If i am bone on bone in my hips, also nothing can be done. There is no reversing it. I don’t know if that is just too depressing to me to face or what? Usually I want to be informed and I even do a lot of reading and research on my own, ordinarily. can anyone relate to this?
When I was first dx with AVN I had a core decompression on both knees and both hips- gave me an extra 15 years for the one knee and the other joints are hanging in there still Also the dx can prompt your doc to try other meds with less side effects on the joints. If you need to lose weight that also will help tremendously with the symptoms
Hi jammingirl, You and I have been diagnosed around about the same time. Ive been having knee and hip pain since this past October. Ive been telling both my pcp and rheumy since the pain started. My rheumy tells me there's nothing wrong. The x-rays showed nothing. My pcp did up my pain med which helps with the pain if Im going to be active for that day. Basically the pain meds are helping me to get whatever needs to be done accomplished. A couple years ago my rt shoulder was bothering me really bad but I assumed it was because I was using a manual wheelchair a few months before the onset of pain. I finally got a mri of the shoulder and wants to go in and replace the shoulder bone (ball) because of the long term use of prednisone damaging the bone. Prednisone was the only thing that worked for my sle. I now have an mri scheduled for tommorow for the other shoulder and two more scheduled for my hip and knee next week. It sounds like Im going through the same as you. Ive been wanting the mri's for awhile because of so much pain and no answers. I feel like Im fianally getting somewhere. I know you already know that bone on bone is no fun but what do we do about. What are the options. Ive never had any major problems until three years ago.I hope that things get better for you and that you get some relief for your pain and discomfort and pray that God is with you always.
mlisa,
Xrays do not always show the whole picture. About a year after my 1st knee replacement i fell on some ice. Shortly after the same knee that was replaced started hurting all the time. The Xray did not show any abnormalities but my doc was very receptive and knew I would not come in to waste time for either of us. He went on to do more tests. The end of the following summer I had another total knee done on same knee bc the component and parts had come apart inside my knee when i fell. He said he could not believe i walked around w/ that amount of pain for as long as I did. I think most of us have had to live with a lot of pain and do know when something is wrong! Trust yourself!
Poobie.
Thank you for your comment. I am embarrassed to say I had to look up core decompression! It sounds like an interesting procedure but possibly problematic due to pain at the site where bone is taken from as well as possibility of infection, of course that cannot be avoided , a risk every time there is surgery. i am going to talk to my orthopedic docs, though. and yes I am sure losing 15-20 lbs would help! I have a hard time exercising - getting myself to do it, bc it hurts. and probably i have become lazy! I so appreciate any and all feedback on here! It really helps me not feel like i am alone with this!
jammingrl
Hi
Sorry I can't relate to your pain. I am in pretty good shape, for right now. I have SLE also, almost 2 years. I have "moderate" osteoarthritis on both knees and my left hand is starting to hurt I personally would get the MRI I think you need to know for sure what you are dealing with.
I’m sorry you are in so much pain but do get the MRI done. If nothing else it gives you a baseline for future MRI’s to be compared to. I also wante to say that my father needs both knees replaced and he’s never taken prednisone so it can happen to “healthy” people also. He’s an orthopedist so if anyone knows how to take care of their joints he should! He’s been bone on bone for over a decade but isn’t a candidate for surgery as he has a hole in the bone and there isn’t enough bone to attach the new joint to. He’s still practicing although he takes the elevator at the hospital now instead of the stairs. I know I tend to blame lupus for everything when that’s not always the cause of the pain. (not saying that’s the case with you). Do get the MRI though. I had a baseline one done at 30 on my hips and spine so that my future ones could be compared to it and I’m really glad I did as my docs were able to see that my discs were degenerating in my spine. Good luck!
Although I have not had the same degeneration of so many joints, I can relate to your reluctance to additional tests. The problem I see with avoiding the MRI is the assumption that you already know the results. This may not be so. Unfortunately there are many things that your doctor could learn, something totally unexpected. If I were you, as long as the test is covered by insurance , I would have the MRI
Best of luck.