Sjogren’s Syndrome – Introduce yourself and meet others

Hi i was just officially diagnosed via a lip biopsy as my bloodwork was negetive. my rheumotologist also believes i have fibro. i am unable to sleep through the night. i even took a tylenol PM. didnt work. i would like to learn more about this disease.

Thanks, my post wasn't coherent. Apologies. I don't chew sugar free gum at night (I WOULS be afraid I would swallow it). II like your suggestions about hours, but I wasn't given guidanc, so just took pills every 8 hours after I first rec'd the pescripiong. Unfortunately, I don't think I can skip the middle of the night (maybe a gradual tweak will get me to more sane hours (: . I tried skipping the night dose, but doesn't work. Eyes glued together, generally bad news. The sweating is not like real sweat, but I am soaked and freezing. It' s cold enough weather in ny area, my apartment is over heated and dru/ but turning off heat is too cold. (I do use a humidier to counter the dryness. Long story short, i'll aim to twak to those hours . Thanks. ,

@cblue the schedule of 6-2-10 is exactly every 8 hours and you won’t have to keep figuring the times! You certainly don’t want to skip the night dose—10pm is the night dose. If you like to stay up later, try 7am, 3pm, 11pm.
The night sweats sound awful! What has your doctor suggested be done for them?

Thanks for suggestions. To switch I would have to take a dose early. My doctor at first wasn’t responding (odd, she was very responsive when I has vascultis..lab work which somehow ruled out auto immune cause. ), so I haven’t asked anything. However, I eventually received a call from her assistant to renew a prescription & offer me an appointment in a few weeks. I don’t how if she will respond to portal messages. I Haven’t tried since reaching the assistant last week. But especially since the end of daylight savings time evenings are worse “earlier “… The evening dose of cevimeline doesn’t work & eyes & sensitivity to sound and joint pain all increas. Sleeping is impossible.. but during the day if I keep moving.. I’m not too bad. Starting to lose hair from the hydroxychloroquine maybe? How much hair will I lose? ( female- hope not all !! !

@cblue I really think you should call your doctor or message her thru the portal. She needs to know what goes on in the evenings. Nothing sounds right to me. (I’m not a doctor, but I can tell when someone is miserable)
Will you call or send a message tomorrow?

I was pretty miserable and I am on and off. I didn’t know what to ask her, but I did write to her about my finger, pain and lack of dexterity. She told me to take Tylenol a few times a day I’m seeing her in a week and a half. I really don’t know how to ask a portal question about how I’m feeling during the daytime hours after I get past the early morning if I keep moving, I’m OK, except for the finger, dexterity and pain(I’m not wonderful but I can go out for a walk or exercise slowly but it helps)) the fact that I’m in an apartment is overheated and dry or freezing cold she can’t do anything about I run a humidifier I think I need to buy a better one that covers more of the house-(apartment actually) so I have no control over the heat . Thanks for your support. Hopefully when I see her, she’ll have some suggestions or at least give me an idea about what to expect I went through old notes, and I actually had a somewhat milder, but similar outbreak that led to hospitalization in May 2022 for sodium crisis I was drinking too much Water .

Thanks for suggestions. To switch I would have to take a dose early. My doctor at first wasn’t responding (odd, she was very responsive when I has vascultis..lab work which somehow ruled out auto immune cause. ), so I haven’t asked anything. However, I eventually received a call from her assistant to renew a prescription & offer me an appointment in a few weeks. I don’t how if she will respond to portal messages. I Haven’t tried since reaching the assistant last week. But especially since the end of daylight savings time evenings are worse “earlier “… The evening dose of cevimeline doesn’t work & eyes & sensitivity to sound and joint pain all increas. Sleeping is impossible.. but during the day if I keep moving.. I’m not too bad. Starting to lose hair from the hydroxychloroquine maybe? How much hair will I lose? ( female- hope not all !! !

@cblue the schedule of 6-2-10 is exactly every 8 hours and you won’t have to keep figuring the times! You certainly don’t want to skip the night dose—10pm is the night dose. If you like to stay up later, try 7am, 3pm, 11pm.
The night sweats sound awful! What has your doctor suggested be done for them?

Follow up question I’ve been trying to get to your schedule, but I’m not there yet. Questions though you and those who take civemeline ((sp?) … at times it seems like I have too much saliva, but the saliva doesn’t feel like real saliva. It feels it has more of a mucousy feel I’m wondering what others who take this feel. I thought I read either at this website or this the advocacy site, but this saliva doesn’t protect teeth, is that accurate? My dentist is prescribing fluoride treatment daily. I’m responding to one person, but I’m happy to hear from any others who have Sjogrens and take this medication.