Sjogrens starting to rule my life and now sacrolytic joint pain with lupus I have a tissue in my hand all day eye sores due to sjogrens and dry mouth using a spray embarrassingly lots of the day any one got this lower back pain along with sjogrens and or lupus ? Nothing shows on a MRI a Cat Scans or X-ray s I feel a fraud but it ruling my life and my job !!!
YES. I have it too and have been told multiple times by my sjogie that it's "mechanical" and "not related to Sjogren's" and have even suspected that I am being eyeballed a bit as a "drug seeker" because I keep insisting that this pain is there and often reaches debilitating levels. The thing is, the intensity of the pain is without doubt tied to the intensity of my "regular" Sjogrens symptoms. Would that necessarily be the case if it weren't somehow Sjogren's related?
At any rate, I do tend to experience ALL my issues as being Sjogren's related. It's hard not to as, in fact, I was never ever really sick before I had Sjogren's (unless you can term the misery of pregnancy as an illness).
How do your doctors deal with your sacrolytic joint pain?
I've been waiting to see a rheumy and hope they have an idea of linking it with sjorgens orthopaedics just ignored fact I had sjorgens and lupus yet I have said if my sjorgens bad my pain in back bad. My gp is great if it wasn't for her I would go mad she listens believes me and helps me my eyes are so bad that the sores at sides of eyes have become effected from constant running and I go through a glandosane spray in a few days I am told I have a severe level of sjogrens even my dentist is great lost several teeth recently I would love to hear how u are in the future as it's by listening to other people who have similair situations that we understand how we have good days and bad days x
After dealing with Sjogren's for nearly 4 years now (I'm 57), I find that the way it expresses or manifests can vary widely from one person to the next. I have had severe sacroiliac pain for the past 3 years, and I do believe it is related to the SS. My rheumatologist does not agree - she thinks I simply have unrelated osteoarthritis. I suppose it is a moot point, as the only effective treatment for me is Tramadol. I live in the western US and work in the health care field. I am appalled at the poor diagnostics and treatments for Sjogren's. One can't listen to the news on any given day without hearing about new hope for cancer patients. I guess there are just too few of us to garner the big research dollars.
And yet we're suffering from the most common autoimmune disorder, meanwhile autoimmune disorders overall are apparently beocming more and more common in the population... It really doesn't make sense. You would think the research dollars (pounds sterling) would be there. No one is exactly getting rich off of Plaquenil, and there's lots of room for improvement in treatment options. I feel "lucky" that my diagnosis came after only two years of symptoms, though it has taken seven years for me to be on a workable(ish) drug regimen. I turn 50 in August.
Hi Jill , they are all related! Just have to take your meds stop the disease from progressing. I take them daily and when I don't for a couple of days the pain starts all over again.
If you have the time and energy and able to go for walks go ahead ! It helps!
and diet is key to make you feel better!
Regards!