I have been diagnosed about 7 years with combo Lupus and Fibromyalgia and been under a Rheumatologists' care. This latest flare (previous have all been muscular or skin related) is making life really difficult. I have had times with hip and lower extremities having stiffness, aching, deep burning pain that would make mobility difficult. This flare is so different as it seems that the pain is bone related. It is deep throbbing non-stop from my hips to my toes. It feels like the pain of the worst toothache one could have. I actually had a jaw bone related pain just days before this onset of leg pain. It is so different from the muscular pain I have had in the past that I have had to take pain med round the clock for the last two weeks, which is very unusual for me. I have an appointment in Jan to return to Rheumatologist. I don't think this is weather related as it has been relatively mild here so far this fall. Nor is it activity related. I was hoping someone with Lupus / Fibromyalgia or a combo of the two may have some knowledge of this type of symptom. I do hope it is through your research and not firsthand knowledge. Any replies or home remedies will be appreciated.
spellinGoldy, as I understand it, lupus is a connective tissue disease. Personally I find this term so vague as to be meaningless to a non-doctor. The best definition I've found is that connective tissue is the glue-like material between cells that gives form and strength to tissue. It surrounds many organs; specialized kinds include blood, bone, and cartilage.
Most literature I've seen on skeletal problems speaks just to JOINTS, which I find weird, because I've had pain along the long bones of arms/legs since age 13. It's always been a much worse problem for me than joints. I said as much to my rheumatologist early on. His (not very helpful) response: "Well, you DO have a connective tissue disease". But if the definition above is correct, bones ARE a form of "connective tissue".
My doctor asked if barometric changes affect me. Definitely yes, but it's not a mild vs. cold weather thing for me, it's year-around. Along with Plaquenil, I take Advil daily, but I try to take additional amounts ONE DAY BEFORE a weather front hits. If I wait for the front to arrive, it's too late. This helps me some, not perfectly.
One of my hardcovers says that the jaw joint (temperomandibular joint, abrreviated TMJ) inflames in up to 1/3 of lupus patients. I grind my teeth at night when mine's active, doubtless worsening the problem. Last month my grinding cracked a wisdom tooth, whcih I'm having capped. (I only mention that so you can have your dentist check you, if you've caught yourself grinding.)
That same hardcover says that hips are lined with synovium. And synovium can inflame in lupus wherever it's located.
That's about it for my research, such as it is. Wishing you luck with your Jan. appointment & happy holidays, Vee (dx'ed only with lupus)
Last edited by VeeJ; 12-06-2012 at 01:53 AM.
The Following User Says Thank You to VeeJ For This Useful Post: Angelaaljr77 (12-11-2012)
Thanks VeeJ for your input. I too have been labelled as MCTD so it makes sense what you have reported on. I have suffered from some hip and leg discomfort for many years but it never seemed to be outside the joints as you refer to and was more an achy burning type pain. I was surprised at the intensity and sudden onset and persistence of these new pains. It especially makes it difficult to walk when every bone in my feet and legs are so inflamed. I can not take anti-inflammatory aides and have multiple drug allergies and sensitivities so I really have to tough it out daily. I was not wishing someone had this experience but rather if someone had heard or read of it. Well I guess I am unque. It does seem to letting up a little so maybe I am headed in the right direction. I may ask on the Fibro board as it is so hard to know which ailment is the culprit at times. Thanks again for the reply.
Goldy, my first episode of widespread pain along the long bones of arms/legs at age 13 lasted many months. I was hospitalized several times. I know at least some of my labs were off then, like high ESR and low WBC. Now I wonder if that was the start of my lupus, but I'll never know, really.
It still happens, days when I just can't move. My feet hurt, too, like you describe, but my recent episodes last only 1-2-3 days. In the world of autoimmunes, I think this kind of breakout pain is probably common and is considered a "mild symptom" even though misery-making, because when disease doesn't affect major organs, we're considered fortunate.
I hope your rheumatologist can prescribe something you can keep handy for especially miserable days like these. If he doesn't do bloodwork every appt, I hope he does this time. I'm glad it's abated some. Take good care, Vee
The Following User Says Thank You to VeeJ For This Useful Post: goldyfm (12-13-2012)