Lately I've been having this issue where every time I stand up I feel like my whole body is going to give out. Like I'm just going to collapse or faint.

I do have hyperPOTS and I am taking a beta blocker (Carvedilol) but every time I take my blood pressure it seems to be within normal range. And so is my heart rate. It'll be between 85-115 or so.

And during these episodes I usually feel this sudden urge to cry and the overwhelming feeling of gloom comes over me but I'm not thinking about anything that could cause such a reaction.

I don't know if this could also be caused by deconditioning. I haven't really had a life since having to quit my job back in May of this year but I don't think deconditioning could cause this much damage in this small amount of time.

Does anyone have similar experiences to this? I feel this weakness in my lower spine to my legs and almost like a nervous like sensation all over my body and coming down my neck!

Note: I will be seeing my doctor tomorrow for a follow up appointment. I've also seen 3 neurologists this year alone and none of them have helped me and my rheumatologist sucks ass. He denies any neurological involvement in Sjogren's. So I could use all the help I can get.

(apologies for very long post; thanks for reading if you have time)

Hi, new here & hoping for some input before a doctor visit tomorrow (or whenever you see this post) re losing 40 lbs (over 3 years) & continuing GI symptoms. I'm starting to look gaunt and on my third entire wardrobe change ($$$). Female, 65 y/o.

My question is: could continued unintended weight loss due to feeling full & stomach upset be Sjogren's GI symptoms if I have tested negative for gastroparesis?

I've had Sjogren's for 13 years (RA for 16). My Sjogren's had been limited to dry eye/mouth for many years (and small fiber neuropathy), and it was well controlled (on Plaquenil & Xeljanz for RA, plus eye drops).

Three years ago I had an extended period of extreme stress due to my husband's health crisis (he's fine now). It brought on major new symptoms that have never gone away:

- fatigue & post exertional malaise (now diagnosed with Chronic Fatigue)

- worsened dry eyes, skin, scalp & mouth (though mouth not bad enough to use dry mouth products or meds, tried pilocarpine & it made me nauseous). These are not as bad as three years ago, but still much worse than they were before.

- GI SYMPTOMS. I'd never had GI problems before. Three years ago, I began getting full quickly and feeling nauseous & unable to eat much, stomach aches, burping, some bloating, constipation. Began losing weight, living off crackers, rice & cream of wheat. GI doctor did a test & diagnosed mild hiatal hernia & schatski's ring (although acid reflux was not a big symptom for me - only experienced a mild amount a few times/month).

Been on a high dose of PPIs ever since (80 mg Omeprazole), and that does help somewhat. Was able to eat again, though never a normal amount, and I have relatively stable periods interrupted by flares of 1-2 months of misery where I lose more weight.

I asked early on and the doctor agreed some of this might be due to Sjogren's GI symptoms. After 2 years I asked for a gastroparesis test, and it was negative (6%).

I'm continuing to lose weight -- when I have a flare I lose 5 pounds more, then can't regain any because I eat so little. I just get full really fast & poor appetite, and get a stomach ache if I try to eat more. Trying to do protein shakes so at least I get protein. About a year ago, loud stomach gurgling started (not related to hunger).

Finally found something to help with the constipation about 6 months ago -- Motegrity (prucalopride). But it hasn't helped with other symptoms.

I checked the Hiatal Hernia subthread and in all the posts, only 2 people posted about unintended weight loss, and almost no one who commented also experienced that, so there's clearly an element that is not HH (plus a mild HH can be completely unsymptomatic & could be completely unrelated to all of this).

I'm having a colonoscopy in December, so hopefully not colon cancer (GI doc never raised that issue based on my symptoms), and a primary care dr did a bunch of other cancer screening and scans recently (not at my request) & those are fine.

So I'm checking here with you all. I'm feeling pretty desperate at this point. I'm hoping your accumulated wisdom might shed some light as to whether this sounds Sjogren's related...?

For everyone who has read this far, thank you! And I wish health & healing to all in this Sjogren's community!

How would you describe your joint pain and what joints/tissues are affected? Tendons? Deep in joins? Spine? Tenderness?

I currently have a working diagnosis of psoriatic arthritis. I’ve had this for the last decade and for the most part I would say I thought my symptoms match this, however, in recent years I’ve developed adhoc mouth, eyes, and genital dryness and pain which improves when I take cyclosporine.

I do respond to immunotherapy however I tend to do much better on broader therapies (cyclosporine, methotrexate, etc.) than targeted PsA treatments and biologics. This has led me to question whether my diagnosis accounts for the full picture or is accurate. I’ll be visiting Mayo Clinic soon to dive into this. The fun part is majority of my tests are ‘normal’ which is typical with Axial psoriatic arthritis.

I have tested positive with very elevated IGG in the past but my specific Anti-SSA and Anti-SSB are negative at the moment. Feedback is appreciated.

I was diagnosed with Sjogrens and seronegative RA almost 2 years ago. I was started on Plaquenil and Celebrex, then we tried methotrexate and that caused liver issues so we had to take me off it. I was starting to feel a lot better so we didn’t change treatment. Two months later, now, I’m experiencing dysautonomia symptoms. It started as an infrequent but intense pounding in the back of my head when I stand (worst when I go from laying flat to standing). It is now happening EVERY time I stand in addition to a multi-day headache that medication isn’t touching, racing heart when I stand (30-40bpm increase), dizziness, and significant (previously resolved but has returned) fatigue. Genuinely I feel like I am going crazy because the only thing that helps is a couple bottles of Gatorade and McDonald’s fries. I can’t live on that. I need this headache to let up. It’s making me cry (which worsens it). I always drink a lot of water in the day as well due to my dry mouth. My joint pain is also worsened. I get cold/flu symptoms if I am very social or do a lot of errands in a short time (like a day or two). My doctor said at our last appt if my symptoms got worse, we’d have to explore a biologic. Idk, my head is spinning both literally and emotionally.

I’m not sure what’s going on or what the next step even would be. I don’t know how this happened. I was doing better and now I’m back to barely being able to get out of bed. I do know I’m having anxiety about being dismissed at my appt tmwr morning, so any helpful questions to ask my doctor or input from fellow Sjogrens folks would be wonderful.

Thanks for reading. 🙂