Hi to all. I stop in here weekly to read posts and learn more. I don't post a lot unless I am in a flare with questions, and I have received good information and I am appreciative. To hear how this disorder affects others is helpful and eye opening. I am experiencing a flare that has come on and felt different to me. Instead of rambling, I am going to post my symptoms as they appeared.
Christnas time-very tired and my feet tingled and itched at night.
January 12-Osteitis Pubis is returning and hurting when I walk.
After the 12th I felt fluish and cold or sweaty sometimes.
My back, hips, hands and feet ached.
I felt little like cold water drops or tingling at different places on my body.
Last night 1/24 the neuropathy burned in my feet and legs and I sweated at night (darn stuff)
I have had the painful neuropathy before so I recognized this. The osteitis pubis has been silent for 6-8 months (inflammation of pubic bone). The fluish feeling is new as well and just feeling awful. Are these common sjogrens feelings or is another autoimmune disorder starting? I am supposed to have surgery on Feb 7th on my rotator cuff, have waited months to get a surgery date and now the flare is here when I am close. Osteitis pubis is common in AS and sometimes PSA, but not in sjogren''s. My rheumatologist says it is never from autoimmune but over use, but I know they are related as it comes when I flare. Any input is appreciated. Thank you!
Primary sjogrens syndrome
Vascular neuropathy
osteitis pubis
chiari malformation
raynauds
flushing rosacea
Mycophenolate
Gabapentin
vitamins
God Bless a doctor who tells us something isn't from Sjogrens. We know better, don't we. We can have pain and inflammation in any joint and we are just thankful that it doesn't last forever.
I would wonder first if you have some flu as I was at the doctor with many complaints and told that regular flu type A is going around. I'm not sure that is what I have. I have a lot of nausea with my autoimmune issues. Sometimes everyday for days/weeks, etc. One time I was awakened every morning at 4 Am or so with terribly nausea and finally found that gingersnaps and very cold 7 UP was the only thing that helped. This lasted about 2 years and was bloody miserable plus I was working then as nurse so my nights were short and days were long and I was a wreck at times.
I have had lengthy episodes over the years and lots of testing and never can nail it down. I just know it is autoimmune as it comes and goes and hasn't killed me and I don't vomit. The thing to be aware of with Sjogrens is that the gallbladder can be affected more or less from the duct that drains into the gallbladder. Also, the pancreas is a secreting gland and can get involved. I have had issues since 2016 and am to have MRI of pancreas in a couple of weeks. The liver can be affected some also plus our whole GI tract secretes mucous plus acid is secreted in the stomach so nausea can really rear it ugly head a lot. If you have problems with GI tract, stomach, nausea, etc colon in anyway it is a good idea to find a good Gastrointestinal doc so that you have one that gets to know you and you can depend on him.
The cold and sweaty are probably related to autoimmune also. I do this a lot and it goes in streaks. Drugs can cause this plus when you are a woman who has maybe had ovaries removed and/or are post menopausal these sweaty spells can be hard to figure out at times. I know at my age of 80 I don't do the sweats near as much as I used to. Issues also keep us busy trying to interpret. I will ponder over ailments for weeks sometimes before I will finally go to the doctor to see if there is something really wrong. Be aware that if you live in an area of the country that is having such cool, damp and high humidity weather, people are having body aches a lot. Humidity was 99% last evening in my area.
I have had the itchy feet at night off and on years ago. Really does drive a person crazy and the skin on the sides of my feet would be so sensitive I could hardly let the covers touch them. You certainly know the neuropathy from past experiences. I would assume that you have a neurologist to help with these symptoms. Just sort of keep track of the symptoms and be aware of anything that might need to have intervention by a doctor such as lung issues, etc. Good luck and stay warm and safe. meirish
P.S. Try doing a search on this site using "flare symptoms" etc. Lots of posts over the years that might be helpful to you.