MTRJ75

Funny, that's the thing though. I don't remember feeling like I was going down as soon as I got out of bed. Don't even remember it happening. I don't know about you guys, but I yank muscles pretty painfully all the time to the point where I get light-headed and feel like I'm going to vomit and at these times I usually do go down on all fours until it passes. I've never passed out ever though (debating whether to tell doctor due to driving privileges). Guess I couldn't go down on all four this time because of where the pain was (hammies instead of back/side/neck/shoulders/arms)

Thanks Mike. I'm already on several antihistamines for mast cell issues. I did use the electrolytes afterward, but urine color suggested sufficient hydration. (I thought the Sjogren's played a part in drying me out and lowering blood volume over-night) My blood sugar is generally around 100 when I get tested. Never low, but I don't know if that's what you're talking about.

I must have moved the wrong way in bad and badly yanked a hamstring last night. It was cramping so bad, I had to move and rub it and in the process, I yanked the other one just as bad. Now I had to get up and walk it off because it kept getting worse and worse just lying there. This type of thing has been happening a lot more since I've been exercising at least every other day, mostly working on my legs and core. Anyway, I get out of bed and the next thing I know, the dog is licking my face. I'm lying in the doorway between the living room and wash room with my head on the cold hard slab. I didn't hit my head. I must have subconsciously laid myself down there. No pan or blood or bump, but I don't remember that part. This is the FIRST TIME I've ever lost consciousness. I think it was only a matter of minutes, if that, but when I tried to pull myself up by the railing that was there, I literally saw stars. Blackness. I know my house well enough that I was just able to make it back to bed without seeing, but still so light headed I couldn't see, drenched in sweat and extremely nauseous. I couldn't even sit up to drink water for quite a while. I surmised that along with low blood volume, too much of the blood rushed down to where the pain was (hamstrings) with too left for the head. By the time I was able to sit up and look at my phone and drink, it was nearly 7am. I figure it was about an hour. I tried to go back to sleep, but by now, every muscle in my body was numbing and cramping (pins and needles this time, not like the hamstring, but still enough that I couldn't get back to sleep). When I was finally able to stand a little bit, I got some electrolytes in me and went to the bathroom, there was no indication that I was dehydrated at all. Anyway, long winded way of asking what (if anything) can I do to shorten the experience should this ever happen again.

I think half the people with Sjogren's (including me) don't show up in labs for years after symptoms begin (if ever). At this point, your doctor is clown if he doesn't understand that. Current theories suggest POTS/Dysautonomia may be autoimmune in nature too.

Interesting. The post-exercise trembling and exhaustion was a huge negative turning point for me and still one I haven't been able to get past. I've gotten B shots in the past, but never seemed to notice much. My doctor's office is now offering vitamin infusions, though not covered, but I've recently read that there's been little benefit shown.

Tons of electrolytes?

Just remember, when googling, people with dysautonomia don't fit many of the normal patterns. They're likely talking about this as the first symptom of something else. There are a lot of things that are standard (though still not fun) for us that would be cause for a healthy person to get checked out. Of course, we do have to figure out what those standards are first. So, definitely bring this up and get checked (esp. if you're consistently 190/90 - I'm actually the exact opposite with much smaller gaps), but don't panic about the wide gap.

Thank you @Sarah Tee This was a couple of nights ago, so I'm almost back to my normal baseline now. I just didn't get around to posting it for a couple of days. I was thinking the same thing too about Dysautonomia, since it's now suspected that some of it may be autoimmune & the two (DYS & SS) are so closely related. There may even be some who don't realize they have SS.

Rummaging through google during a recent sleepless and highly symptomatic night, I came across this Phase 2 study for dazodalibep being used for Sjogren's Syndrome. Results are encouraging and seemed to benefit even those who have been sick for a while. Could be a game changer. https://sjogrenssyndromenews.com/news/dazodalibep-clinical-trial-sjogrens-syndrome-meets-goal/

Yes, the rehydration does seem like the "safest" option. I do plan on consulting several of my doctors before actually trying. On the other hand, I've got two arms and two legs. I could try all 4 at once. (Just kidding)

After having too many posts deleted, I've finally learned my lesson that I probably can't post the name of the place here, but a new IV therapy place has opened a few minutes from me. Here are some of their offerings I think could be of use, underlining key words. Any suggestions or recommendations?

I get these small gaps all the time. Nobody has ever seemed too concerned (except me sometimes). If it would ease your minds, why not consult with a cardiologist though.

I'm sure someone who handles things better than I will chime in at some point, but please acknowledge that we almost all have felt this way at one time or another and sometimes intermittently when things flare up because it can be like a roller coaster ride sometimes. I learned early on that it's not a barrel through it condition, as much as my family and friends wanted to convince me to just "be stronger". In this case, that seems to have the opposite effect. Arriving here is a good start. Go through some past posts. Use keyword searches for some of your worst symptoms to start. Also check out past posts on the Health Rising blog, where I get a ton of great information from. Unfortunately, there is not single, simple answer. Even the things that help people aren't always the same.

Thanks for the confirmation.

Problem is that every time I see the eye doctor, my eyes seem fine. They think I have 20/20 vision. I told them I just memorized the chart. But, some stuff to remember for appt next month.

II noticed that if I have to focus my eyes to read small print or have light (even sunlight) shone near my eyes that I have great trouble seeing the rest of the day. I've had light blurring for a long time, which came on at once, not gradually. But does this have something to do with improper dilation? Or blood flow to the eyes? Like once my eyes dilate, they don't un-dilate or vice versa?

Good news. It's frustrating how we have to treat our doctors very delicately sometimes.

They certainly don't take my insurance either. Not that I can up and travel to Utah on a whim anyway.

Some people dream of going to Disneyland on vacation. This place seems like my Disneyland. Unfortunately, I'm unable to travel to Utah and the insurance probably wouldn't cover it, but who knows what the future holds? Anyone in the Utah area? I wonder if they'll consult over phone or video. https://www.healthrising.org/blog/2023/07/26/metrodora-chronic-fatigue-syndrome-fibromyalgia-pots-long-covid/

I'm surprised an allopathic doctor would mention gluten and dairy. They might not be wrong about that. I've read some interesting things about ALA too. Don't know about that being a cure though or we'd all be doing it.

I don't think it affects sleep unless I'm active close to bed time, but more or less, yeah.

Afterward. It's odd. Sometimes I don't even really start to sweat till afterwards. It's a weakness, blurry vision, almost a concussed like feeling, digestive distress plus another feeling all throughout my body I can't even explain.

I've been reading a lot about exercise intolerance recently. Whenever I feel well enough to do something, I feel like I need to exercise or do something productive, which puts me immediately back in a horrible state. I read about the success many have had with exercise and wonder what's making my experience so different. Here's a blog recently posted on Health Rising that may answer some of those questions by way of leaky gut: https://www.healthrising.org/blog/2023/07/19/convergence-gut-immune-metabolic-post-exertional-malaise-chronic-fatigue-syndrome/ This would certainly explain a lot, though not all, of the issues I'm consistently having after physical activity.

Although my exercise issues seem different than yours (most of my problems are after any activity, not as much during), it's equally inexplainable in an understandable way with my doctors. I greatly sympathize. I did read something the other day about exercise intolerance possibly being linked to viral reactivation: https://www.healthrising.org/blog/2023/06/17/exercise-immune-system-letdown-chronic-fatigue-syndrome/

At one time, I had really bad paresthesia too. It drove me to the ER more than once. However, this has lessened to the point where it's essentially a non-issue over time. There's hope on that end at least. You may be one to benefit from one of those brain retraining programs. It didn't cure me, but at the very least it has helped me a great deal in how I deal with a lot of it.