So glad that I found this sub-reddit. I feel as if Doctor's have been failing me lately and I don't know where to turn for advice. I was a teenager when I was sick with EB. I was extremely sick with CMV and thought that I was dying about 10 years ago. Was diagnosed with Sjogren's in Dec, 2025. Hysterectomy Feb, 2026. Have had gastric issues since at least Jan, 2025.

I don't know what to expect or how to feel with any of these issues long term. I only know that I'm always thirsty, my eyes are always dry, my skin is always dry around my knuckels, knees, and elbows, and the fatigue is sometimes unbearable. I don't know what a flair of any kind feels like. What I can tell you is that aside from the dryness that is always there, my tongue feels like it has a layer of hair on it, and I feel like trying to brush it often to get that feeling to go away has caused me to lose some taste buds. There is another symptom with the fatigue that is hard to explain, but I'll try. Bear with me....If I move too quickly, it feels as if I move, then an electrostatic charge follows and I feel this through my core. It's weird, but that's the only way that I can explain it. Is this a Sjogren's flair, or could this be a CMV flair? or both?

I have had awful gastric flairs (I guess?), that causes horrendous gas, bloat, and discomfort that usually last about a week or two. So bad that I sleep with a heating pad almost nightly. I've kept a food log, it doesn't seem like it is food triggered at all. I could eat the same thing day after day and be fine until one day I'm not. Maybe hormonal? I have noticed that the stomach issue would start about a week or two before my period then subside. I kept my ovaries, so maybe it's during ovulation? Hormones are crazy!

I am almost 4 mpo from my hysterectomy. My surgury was flawless. I was up and moving (slowly) the next day, and healed quicker than I thought was even possible. I still followed the doctor's guidelines: no sex until 6 weeks po, no lifting over 10lbs, only walk as far as your body tolerates, etc. Until just a couple of weeks ago I was perfectly fine, minimal bloat and swelling in the tummy, and no soreness. It seems that now, all of a sudden, I eat, then look about 6 months pregnant, and I have soreness around my belly button. It isn't unbearable, just enough to know that it's there. Is this normal? The doctor only gave me a baseline of what to expect, but not the full picture.

One other thing that has been happening lately is a loss of apetite. Now, I've gained quite a bit of weight over the last few years, so I'm NOT going to complain if this causes weightloss, but I would like to know why this could possibly be happening.

Can anyone here explain any of this, or have had any similar issues?

44F EB/CMV/Sjogren’s/Hysterectomy