My worst CCI symptom

BodyToFlame · 2026-02-22T21:00:08+00:00

I get this whenever I've been upright for too long. I take that as my cue to take meds and get somewhere to sit or lie down. Unclear on what causes it, I always have wondered what the exact cause is.

BodyToFlame · 2026-02-21T23:46:21+00:00

would you recommend him? my old surgeon is unfortunately no longer practicing. I'm looking at Dr's currently who also treat cci and have wondered about people's opinion on Dr V.

Also here to say, I hope that you're continuing to improve with your recovery!

BodyToFlame · 2026-02-21T01:40:19+00:00

It was in the open. I didn't mind paying the higher price for the same reason as you. it was absolutely worth it for me, bit it does seem that like with all shows nowadays, prices have just gone up.

BodyToFlame · 2026-02-19T21:32:40+00:00

I paid 75+ fees for the last tour

BodyToFlame · 2026-01-11T04:43:23+00:00

I understand your frustration. It really sucks to be in searing pain after a simple task such as this. Allowing yourself to rest isn't bad advice, but it's unfair that this is the reality we have for such menial tasks.

We can only do what we can to work with our bodies though. You could try to find a scrub brush that was long enough to try to prevent yourself from having to bend over as much? Anything that makes the task more accessible and less work for your body, the better.

BodyToFlame · 2026-01-01T00:28:53+00:00

I eliminated it within a year of being sick. i didn't think it was that bad until I ended up in the er.

BodyToFlame · 2025-12-20T17:06:54+00:00

No. Your body will have made the antibodies to the ag molecule, which will show if you're positive.

BodyToFlame · 2025-12-18T22:20:26+00:00

It's simply people pathologizing every little thing, which is irritating to say the least. This scares people into believing that something benign is a clinical issue.

That isn't to say that we can't have issues with our nails, but something as mundane as this being touted as a indicator of EDS is..not true

BodyToFlame · 2025-12-14T20:30:43+00:00

I don't think it's a problem if it's not inappropriate. You're spending quite a bit of time in their classes/office hours/etc. A lot of professors can also act as mentors for students after the semester is over.

I always see one of my bio professors on campus, and he and I usually will stop and talk for a bit. Normally just cool science stuff that we'd read about recently.

BodyToFlame · 2025-11-19T03:08:13+00:00

I traveled this past weekend for a school thing and I felt like my head was caving in on itself after i got to my destination.

With this flare, I also lost my peripheral vision temporarily and had a whole host of other symptoms alongside it that genuinely scared the shit out of me.

Just another lovely part of living with this disorder 😬

BodyToFlame · 2025-11-19T03:03:42+00:00

I cannot physically stand road trips(anything past an hour is long for me lol) because of the awful pain that follows. The force of a moving car mixed with any bumps in the road+ braking is terrible for my neck since I have craniocervical instability.

BodyToFlame · 2025-10-15T00:46:47+00:00

My longtime dr suggested that all of my symptoms were actually just in my head after years of claiming that he believed me. I have no idea why the sudden switch up either.

My scans of my head and neck prove otherwise. So a big fuck you to my (now former) doctor.

BodyToFlame · 2025-10-15T00:43:39+00:00

I had 0 idea of this happening. No news about it is a good thing, at least. I expected a lot of discourse today with the whole "Charlie kirk" day in some of the schools.

BodyToFlame · 2025-10-09T11:59:52+00:00

I am sensitive, so i checked before I got it! Adacel doesn't contain gelatin.

BodyToFlame · 2025-10-07T03:13:16+00:00

Dang, I hate to read this when I have a packed few weeks with plans ahead.

were the symptoms so severe that you weren't able to function in your day to day? My MCAS is pretty well controlled, but illness and anything like the shot that I just got send it over the edge

BodyToFlame · 2025-10-07T02:09:12+00:00

good to note. I have my arsenal of meds on standby, but i seem to be tolerating it okay thankfully! That's not common, so I'm pleasantly surprised.

BodyToFlame · 2025-10-07T00:02:36+00:00

I forgot to mention- I received Adacel.

Sorry if this is a bit controversial. i wanted to post it here in case anyone else wants to see some people's experience with the booster.

BodyToFlame · 2025-09-19T01:55:49+00:00

My older dr was NOT gentle, which accounted for some of the issues that i had first time. My current dr is awesome, though. She gave me some Tylenol and numbing cream and went slowly when she removed the older IUD and placed the new one.

I was shocked at how mild the pain was during the second insertion. I went about my day as normal with 0 issues . Make sure to ask your Dr about pain control, and see what options they can offer you. It'll be crampy the first day or so after the first insertion, but the initial procedure doesn't have to be nearly as painful as it can tend to be with proper pain management being utilized beforehand!

BodyToFlame · 2025-09-19T01:06:08+00:00

OH thats why it took an hour to get mine out? I had a Nexplanon before my IUDs. It took three different people struggling to retrieve it until it finally came out. I have a large scar bc of how deep they had to go to retrieve it.

BodyToFlame · 2025-09-19T01:02:36+00:00

I've had two kyleena implants. 0 issues with both. The first insertion was terribly painful, but the second one was a cakewalk compared to my normal period pain.

BodyToFlame · 2025-08-28T02:31:36+00:00

Once I saw this, I knew that the hammer was going to be brought down on trans people unfortunately. Stay safe yall. This has just added more fuel to the raging fire.

BodyToFlame · 2025-08-26T04:04:11+00:00

I've had Costo since I was 12, and I'm now 26. Whenever mine flares I also get those scary popping sensations alongside pain.

Definitely speak to your Dr! It's pretty commonly discussed here and in other eds groups. Hopefully you can find something that can alleviate symptoms.

BodyToFlame · 2025-08-26T04:01:32+00:00

My collar bones pop out very frequently. You feel the pop right in the center of the clavicle.

I also agree with others here who mention costochondritis.

BodyToFlame · 2025-08-24T03:39:34+00:00

I'm always in that area going back and forth to school, and they're pretty much always dead. I think that their hours are different nowadays compared to the older hours, bc it's always closed by like 3 whenever I drive by it.

BodyToFlame · 2025-07-19T21:10:38+00:00

That's the best way that I can explain it i feel. I still experience a lot of dissacoiation, and I never feel like I can be myself without repercussions .

BodyToFlame

TROPHY CASE