r/Sjogrens

I would be encouraged to hear positive stories from those who have been able to improve dysautonomic symptoms, especially digestive ones (gastroparesis, nausea) with immunoglobulin treatment.🙏

I have been diagnose with Sjogrens for about 8 years. In the past year I have been waking up every night with my hands either completely numb (unusable and completely asleep) or pins and needles. My rheumatologist sent me to a neurologist who thought I had carpel tunnel? The neurologist did an emg/ncs that came back normal and that I do not have carpel tunnel. But I am still waking up every single night with numbness in my hands. I sleep with wrist braces and still wake up with numb hands. Has anyone else dealt with this type of numbness? What is it and how can I stop it from happening?

My wife (62) was diagnosed with rheumatoid arthritis 15 years ago, closely followed by Sjogrens. Confirmed via various means, a sialogram, etc. suffered with dry mouth, burning tongue, multiple dental issues, etc, with little relief. I found the Salipen online and she has used it for three years with real effect, but not as much as desired.
On a different note, being an RN by training, but more importantly a PhD (zoology), she recently investigated HRT in older women, which has mostly been downplayed or seen as risky.

Well, it seems that that clinician advice is well out of date. You can look into that yourself, but most importantly, since commencing HRT (oestrogen gel and progesterone tabs) 2-3 months ago, she has a real turnaround in her Sjogrens related discomfort. The Salipen has barely been used. And burning, dry mouth is much improved.

Not saying it’s a cure, but thought it more than useful to mention here.
This is not clinical advice, but a relating of experience. Important to get your own review and advice.

Hope this helps.

Hi friends,

I’m recently diagnosed and this subreddit has been a lifesaver! I’ve had debilitating dysautonomia/POTS for several years, but the dryness only started recently, about the time I was diagnosed via lip biopsy.

My rheum is actually great and is trying to get me on IVIG as he believes the Dysautonomia/POTS is neurosjogren’s (sure makes sense). However, I guess I’ve just been super stressed out by this whole process. I’ve been feeling pretty crappy and pegging my hopes on insurance being amenable is not an anti-anxiety remedy, lol.

Anyway, this has caused me to start grinding my teeth (something I did previously but haven’t struggled with in a while). I already have insomnia from the Dysautonomia, and now the dry mouth, particularly in the evenings and mornings. I can’t IMAGINE wearing a mouth guard on top of all that. But my jaw has been hurting for days now.

Does anyone have any tips? Any knowledge of night guards that are unobtrusive and don’t hold the mouth open?

Thanks in advance!