View Full Version : Bone pain...is this a lupus symptom?

07-05-2011, 07:06 PM
hi All

My PCP recently suggested lupus as a possibility for me and I had my bloodwork drawn today. I'm learning about the symptoms and trying to learn what I can to make good decisions.

I have other conditions...chiari malformation and ehlers danlos...both cause pain and chiari causes fatigue. My joints have become an issue which is what is leading my PCP in this direction, as they seem to be affected by much more than the ehlers danlos.

One symptom I've had for many years is severe bone pain. It's not constant. It comes and stays for a few days a few times a month and it is horrible. No doc has ever had an answer when it comes to this particular symptom.

I've read about the joint and muscle pain, and I'm wondering if any of you experience this bone pain. It's definitely in the bones (not muscle) and mostly the long bones. My forearms and my shins are the most frequent place for the pain, sometimes the bones in my thighs and sometimes my upper arms. And when it's in my forearms, many times it shoots into my wrists and hands.

Anyone else??
Thanks in advance
Leslie in Pittsburgh

07-05-2011, 07:48 PM
Hi Leslie,
Yes, I've had bone pain. I had something called Avascular Necrosis. Here's a link to some info about it: http://avnsupport.org/
Have you taken lots of steroids in the past for your other conditions? That is often a cause for AVN.
I haven't taken them, so mine was called idiopathic (no known cause). Because of it, I can never take prednisone.
I had arthroscopic surgery on my knee, and the surgeon shaved back the necrotic bone. It took a long, long time to heal, but that joint now feels a lot better.
Hope this helps.

07-05-2011, 08:03 PM
Great answer Marla. The easy answer is that Lupus CAN affect almost any part of the body. If you have a weakness in a certain area Lupus tends to strike there first.

07-06-2011, 06:02 AM
I don't indulge too often, but my cjildren treated me to a mani-pedi for Mother's Day....ahhhhhh. I about flew out of the chair when the guy ran his thumbs up my shins. This has never bothered me before and he wasn't using brute force, but it hurt like heck.

07-06-2011, 07:42 AM
Hi Leslieann,

You've hit a right subject here mate.lol

Bone pain is past a joke concerning myself...i have swollen hands and knees besides hip pain and if i sit to long my hips lock and if i get about it's time to rest again, my neck aches besides cracking and my ankles have started doing it lately and if the pains not shooting to one place it's another, then in my elbows besides shoulder blades...oh and i can't forget the lovely spasms besides which are so painful.

Besides all that lot the pain in my body with my organs doing a merry dance of constant pain besides...my life at 42 as come to a rollator like Marla and wheelchair, what a splendid life for we all.

Actually the lots driving me mad. Terry xxx

07-06-2011, 03:54 PM
Thanks for the input Ladies ...I really appreciate it!

Marla...that sounds really scary, actually.

My ANA says "negative" so I'm going to wait and see what my PCP thinks tomorrow. I don't know what to think, but the pain is horrible today.

07-06-2011, 07:09 PM
Leslieann, as you know, my daughter has EDS and an autoimmune disorder. She gets deep bone pain in her legs - especially after certain kinds of anesthesia. It's really miserable. I get some, but not as bad as she does and mine floats around.

If your pain moves, then it's probably not avascular necrosis. If it's always in your right hip, for instance, then maybe the doc needs to order an MRI to figure out what's going on. Do your joints dislocate? Sometimes my daughter gets an aching pain and doesn't realize for hours that her hip or shoulder has subluxed.

Waiting for answers is so hard, especially when you already have multiple medical issues. I hope that your docs figure things out for you soon.