u/Haunting_Cherry_6521

Hi!

I am 20 and have been recently diagnosed with celiac disease and limited scleroderma. Positive ANA, titer 1:1280, centromere pattern

I have really severe chronic pain and fatigue. No skin involvement besides raynaud’s and a lot of telangiectasias.

My rheumatologist and I came to the conclusion that my condition isn’t severe enough yet to necessitate the use of immunosuppressants, so we are going to try low dose naltrexone.

What are your experiences with LDN?

Another question:
I have been diagnosed with POTS but never received a tilt table test. I am scheduled for a lung function test to check for the possibility of pulmonary hypertension.

Did anyone’s suspected POTS turn out to be Pulmonary Hypertension? If you have Pulmonary Hypertension, what has your experience been symptom-wise?

Thank you all!

Hi everyone! I’m new here. Not sure what I’m looking for with this post. Advice? Personal experiences? Anything? 😭

To preface, I have hEDS, POTS, and MCAS. I’ve had moderate GI issues for ~5-6 years now (bloating, food sensitivities, nausea). Tons of nutritional deficiencies. But my symptoms have never been this bad. About 2.5 weeks ago, in the middle of an hEDS flare up, I woke up with textbook Gastroparesis symptoms, minus the vomiting. I’m terrified of throwing up so I will mind over matter that s*** every single time. Even if my mouth is actively watering. My care team and I are pretty positive it’s GP.

I’m having a really hard time with intake. I’ve been in the ER twice now for fluids, and have lost 20 pounds so far. I don’t really have extra weight that I can manage to lose and I’m really really struggling. I can’t tolerate pretty much anything and am getting in MAX 3 cups of liquid and maybe 500 calories total every day. I’m barely ingesting anything because the aftermath is so horrible.

My GES is in 2 weeks and the waiting is (quite literally) killing me. How do I do it 😫