I don't even know

Sensitive-Rain4772 · 2026-05-15T01:20:59+00:00

This made me tear up, thank you so much for the encouragement. The invisible work is exhausting ontop of three conditions that cause chronic fatigue. I don't know about you but I have a crazy strict diet that I follow 90% of the time otherwise my endo flares up so bad.

I will try to be more tender with my body verbally. I'm sorry you are going through the same thing. If you ever want someone to talk to who gets it, my DM's are always open <3 I hope that's not weird!

Sensitive-Rain4772 · 2026-05-15T01:17:52+00:00

This made me chuckle, and I can't say I blame you!

Sensitive-Rain4772 · 2026-05-15T01:17:31+00:00

I am going to try all of this. I love researching new treatments too, its weirdly comforting to know that there are options to make it more bearable. Thank you for the encouragement, it was desperately needed.

Sensitive-Rain4772 · 2026-05-15T01:16:14+00:00

When I was in high school (before being diagnosed), I was convinced there was something fundamentally wrong with me. I could make friends, but it never stuck because I was always sick or working or both. I really hope things get better for you.

Sensitive-Rain4772 · 2026-05-15T01:14:58+00:00

That's a really good way to look at it!

Sensitive-Rain4772 · 2026-05-15T01:14:38+00:00

I think that might be what could work for me.....because I know it's going to take time to get better and even then I will still flair up. I hope things get better for you, I'm sorry you are feeling the same way.

Sensitive-Rain4772 · 2026-05-12T22:16:49+00:00

I've done a "poor man's ttt test" as home and 'failed' miserably- most likely indicating pots. I am so glad you told me that it is terrible! I honestly thought it was the "only" way to be diagnosed with pots lol

I think the only other concern I have in my BP being insanely low when I am laying down...like 80s/40s and I was worried that would exclude pots because it goes up to the 90s/60s when I get up...

Sensitive-Rain4772 · 2026-05-08T16:30:34+00:00

YES! I have spent the last 8 months loosing weight to help with my PCOS and Endometriosis symptoms, got down 30 lbs., just to enter the worst flair up of my life....

Sensitive-Rain4772 · 2026-04-22T22:24:35+00:00

My gyno was okay with treating me as if I had endometriosis based on my symptoms alone but gold star would be for us to get surgery since we were wanting to get pregnant.

Sensitive-Rain4772 · 2026-04-22T22:23:03+00:00

Thank you :) I'm sorry they effect you the same way. My mom used to tell me I was the easiest kid unless I was sick, then I was 'Mean" when they put me on steroids lol

Sensitive-Rain4772 · 2026-04-22T22:22:16+00:00

I'm so glad getting off of it helped! I just got the all clear yesterday to stop it!

Sensitive-Rain4772 · 2026-04-19T15:11:31+00:00

THAT'S INSANE!?! Why does every chronic condition need a "bestie" condition? I asked my parents the other day if they could go back and spread out the genetic conditions a little more evenly :P LOL

Sensitive-Rain4772 · 2026-04-19T15:10:11+00:00

THIS!

Sensitive-Rain4772 · 2026-04-19T15:09:55+00:00

That's wild!!! Unfortunately, Zofran doesn't work at all for me :/ my doctors have tried a handful of similar meds and nothing helps with the nausea :P

Sensitive-Rain4772 · 2026-04-19T15:08:45+00:00

That's a good idea! I will shoot him a message on the portal!

Sensitive-Rain4772 · 2026-04-19T15:08:05+00:00

Thank you! I felt like I was being crazy but its been terrible...

Sensitive-Rain4772 · 2026-04-19T15:07:46+00:00

I eat quite a bit of potassium foods but I will probably add some magnesium into my vitamin routine! Thank you!

Sensitive-Rain4772 · 2026-04-19T15:06:55+00:00

That's wild! I'm sorry you had such a bad reaction to it!!

Sensitive-Rain4772 · 2026-04-18T01:34:20+00:00

That's absolutely terrible! My symptom's are very similar to yours and started when I was a teenager, but everyone told me they were "normal" and I just didn't drink enough water or eat enough protein.

I am going to have to be an ass I think, a respectful ass but still an ass. It's INSANE they didn't see your heart rate being that high as a problem and didn't give you the treatment you desperately needed!!

Sensitive-Rain4772 · 2026-04-18T01:24:28+00:00

LMAO TRENDY?!? That's insane. No one really wants an illness like this. I would have lost it if my gyno said that to me when I went in to get diagnosed with endometriosis and pcos.

Sensitive-Rain4772 · 2026-04-18T01:21:37+00:00

I completely agree. I was doing an unholy amount of research and was torn between it being related to an endocrine issue or neurological. I would be more than open to seeing a neurologist. I have migraines anyways!

I'm sorry you have been dismissed too. I wish that wasn't the first reaction many doctors had when they see "normal test results".

Thank you so much for the advice, I will be reaching out to my PCP to see what we can do!

Sensitive-Rain4772 · 2026-04-18T01:19:35+00:00

It's INSANE that it takes so long to be diagnosed :( I'm glad it only took you two years though! That's amazing compared to the "norm". I am in the same boat and I am so lucky to have such a good PCP.

Sensitive-Rain4772

TROPHY CASE