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Sjogren's Syndrome Support

Deep bone pain

I sometimes get deep bone pain in my thigh or upper arm. Is this common to Sjogren’s?

Hi @Marsey! I don’t know that deep bone pain is necessarily part of Sjogren’s, but there certainly can be joint pain and neuropathic pain associated with Sjogren’s. I encourage you to talk to your doctor, especially if the pain is ongoing.

Often forgotten about SSJ s that it is often accompanied by Dysautonomia. You might take a look at our new Dysautonomia community for more info: http://www.livingwithdysautonomia.org/ Click on the community tab to get to the 101.

Oh boy. NOW I’m scared. (Thanks)

Wow. My first cousin has dyautonomia. I have gotten deep bone pain. Feels like someone is running a long drill through the bone like a tunnel. Ugh. Doesn’t happen often, thankfully

Yes! Deep thigh bone pain is very painful. Why do we get it?

Thanks for the info on dysautonomia. I’m wondering now whether it is behind that feeling I get, often out of the blue, that I’m going to pass out but not like the usual fainting; more like I NEED to pass out to make the strange feeling disappear – no pain, just general malaise with mild breathing issues, but that might be because of anxiety caused by the weird, helpless feeling that I’m going to have to succumb to this thing. Happened to me twice on an airplane and once climbing the Great Wall of China so I suspect it’s related to circulation? I know I sound insane but I hope someone else out there does as well!

These sound like symptoms that I get during my flares. I have been thoroughly checked out by all my Drs to make sure there were no underlying issues so I am sure at this point this is Sjogren’s, but it was quite frightening and painful while I was going through it undiagnosed. My breathing issues came and went but I could go from being able to hike 10 miles to being barely able to cross a room without stopping to gasp for air.

Regarding the breathing issues, I ignored breathing issues, and a chronic cough for a long time. Finally I mentioned it to my rheumatologist. Well, after testing, I was ultimately diagnosed with asthma. Surprise! The point is that if something is intermittent but continues to come back, it’s probably worthwhile to get it checked out.