Hi Everyone!

I’m new to the site and just wished to say hi and thank you for making me feel welcome. I live in Australia and was diagnosed with SS in 2004 along with RTA (Renal Tubular Acidosis),I was 22. I have the typical symptoms…dry mounth and eyes, muscular pain, lack of sleep along with extreme fatigue! I also get a lot of mouth ulcers
In 2014 I was diagnosed with Cryoglobulinaemia, vasulities and arthritis.
I wish to see what treatments people are on and how they have reacted to it. My issue is my body/system can’t handle many of the “designed” drugs for my conditions…I suffer severe reactions and have been listed as “allergic” to many I’ve taken.
Currently on citrate liquid and calcium (kidneys) and Rituximab Infusion which is a form of chemo.
Interested to see what others are on.
Susana :slight_smile:

Hi Susana welcome! I also suffer from those mouth ulcers a lot ,as with dry mouth eyes, also have sleep apnea pretty bad, sometimes my girlfriend has to hit me to breathe, I need to have a sleep study done that for sure , I would bet money that our sleep affects our SS negatively. That’s definitely on my list when I have my first appt with rheum.

The lack of sleep with SS is a real nuisance. Even if I do sleep, it isn't really restful but insomnia seems to come with the disease. As meds, I'm on pretty standard stuff but I would bet others here can be really helpful with that. My allergist had commented that once my allergies kick in, it can set the Sjogren's into overdrive which then gets a whole cycle between the two going. This thing always keeps us on our toes! LOL

Yes, we have to be a subject matter expert to manage this disease and then we can fall short depending on many variables. Lack of quality sleep, stress, over activity, sun exposure, aches and pains. I take only a few prescription meds for this and prefer to use exercise, deep breathing and meditation & phys therapy to manage the symptoms.

I just found this in my old messages. I have Sjogren's, Raynaud's, RTA and an enlarged adrenal gland. I have controlled my mouth ulcers for over two years by oil pulling with coconut oil. I sometimes had to do it four times a day, now only do it twice a day.

I recently had an at-home sleep study done and was surprised to find out that my sleep “efficiency” score was a 65, although I rated my sleep that night as better than average. I estimated that I only woke up 4-5 times during the night, but turns out that I was only truly sleeping 65% of the time. Its clear now that the pain, dryness and discomfort keep me from getting a restful and productive sleep

I had a similar experience...not a sleep study but FitBit was on sale so I started on that. I average over 9 restless periods a night. Even if I 'm not fully waking up the amount of time not getting restful sleep is pretty high. You're right in that it has an effect even if we can't tell.