For those of you who have pain related to a primary diagnosis of sjogrens, where is your pain located in the body? Those aches that people talk about. Of course dry mouth and eyes are uncomfortable but where is the body pain located?
My pain was a serious irritation of the trigeminal nerve which runs across the back of your head between the ears (bad enough to think I was having a stroke); pain in several of my teeth (probably related to the nerve irritation), moving around pain in my neck, shoulders and upper back (no injuries, seemed to be in muscles and moved around within several minutes but didn?t go away), and tightness and tingling in my forearms.
Since I have been on meds I have not had a serious reoccurrence which I thank the stars for every day. I was in tears during that period from the pain and I am pretty stoic. I sometimes get the tingling and tightness in a forearm and head pain in a flare but nothing like that initial attack.
Separating pain is a challenge with as much spinal damage as I have had. Sjogrens: eye pain (dry), mouth pain (dry), Parotid glands, trigeminal, and beard pain (dry skin).
Sun light brings on a lot of pain. It seems like my whole autonomic nervous system goes out of whack. My nerve pain becomes unbearable.
I, too, have injuries from "life." Aches in those areas I ignore...or understand where they originated. I have costochondritis which can flare at anytime, so my chest area aches/is sensitive, joints ...knees, wrists...and of course rib joints/sternum, fatigue is generalized. When I feel as if my feet are dragging the ground (it's my legs not moving well) I realize my arms are lethargic, my head feels ...uh....swollen? heavy. Yes...heavy. It is NOT hard to hold up but seems so. Back, shoulders. Ankles. Ankles daily...but again...old injuries there. If my sialadenitis occurs, then of course my jaw/s.
As I read back over that, I guess my answer could/should be: all over. I am on 3mg prednisone daily...tried to get it to 2mg per day per Rheumy's urging. I made it about 6 weeks. This week I bumped it back up to 3. Made all the diff. I've had one "slow" day on 3.
Sjoldier c3
Initially it was my legs and has been consistently the worst in that location for the past 15 or 20 years. I also have bad pain in my back and hands. I have gremlins, that's what I call the stabbing pain that can show up anywhere on my body at anytime. I have burning pain which is probably neuropathy that occurs in my feet on occasion.
I take 30 mg. of ms contin three times daily, 15 mg. of oxycodone twice daily for breakthrough pain and 600 mg. of gabapentin as needed for neuropathy. My Dr. is wanting to get me off pain meds because of pressure from the dea. I will kill myself if my pain meds are taken away from me. It took me so long to get good pain care and now because of the dea I might lose it. It makes me sick to my stomach and I will not live in that kind of pain again.
Wal, I would have to say all over. My pain is all over. I have fibro and primary SS and so I have to distinguish between the two, and sometimes it is difficult. Sometimes my rheumy thinks he knows more about it than me, but I ignore him and I know what it is from. Fatigue seems to be my biggest problem now. I guess I have learned to deal with my pain level. I'm grateful for ibuprofin and heating pads.
Multiple kinds of pain, which come and go and come back in no particular pattern.
Muscle pain - a tender achy feeling in my upper arms and sometimes in other areas. Feels like I've been moving heavy boxes all day, but I haven't
Small muscle pain - sometimes aches in the muscles of my hands, feet, face, so that moving my hands hurts
Joint pain - again large joints - knees, ankles, shoulders, or lots of little joints in my hands and feet.
Neuropathy - tingling of the feet and toes, like my feet are asleep. Sharp stabbing pain in my lower back, similar to sciatica.
Numbness and tingling in my calf. Sharp stabbing pain appearing in random locations, which lasts for a couple of days, then disappears. Has occurred in face, knee, base of big toe, top of thigh. Hurts a lot
Muscle spasms - some of the larger muscles, like the upper thigh, just spasm uncontrollably. It can last for hours, and hurts.
Surprisingly, considering I was misdiagnosed with RA five years ago, my pain isn't in my joints but is mostly in my legs when I'm still for any length of time, and I would call it bone and nerve pain combined. It starts in my feet and carries on up my legs into my knees and stops in my thighs. It's a crawling, tingling dull ache - a bit like toothache - and it feels very deep. Especially in my ankles, shins abs knees. It's sickening, a bit like when you hit a funny bone.
The other place is in the knuckles of my hands overnights. I wake and can barely lift the duvet or move a pillow without crying out. This usually resolves once I'm up and about or start using my hands. In my face I have numbness, tingling and a feeling as if I'm wearing a mouth brace that has just been tightened. This sensation goes up into my nostrils and left eye and I notice it more in the night. I wear a night guard for bruxism so I'm guessing the tightness is because I'm clenching so hard - judging by the state of my mouth guard!
I have Atypical Trigeminal Neuralgia...facial pain.
Lately, I have pain in one hip, right hand (carpel tunnel???) and back.
On and off problems with pain in my feet...particularly in two toes.
Strong sun is not my friend, makes me tired to the bone.
I have, like everyone else, dry eyes and mouth...but have had decent luck with biotene toothpaste etc.