u/Unable-Patience-530

The televangelist video came up for me again, and it made me think of my time raised in a Baptist church. There were some things that I didn’t even think about when I was younger, but looking back were totally freaky!

There’s the whole “acquire the fire” music festival, which used to have a heavy push on “fighting for Christ”… think “if someone had a g*n to your head, you should be ready to accept death and say you believe without hesitation”.

Then I was also reminded of what I used to think was a super popular haunted house, but it’s a very niche event. Judgment House, was a walk through event following sinners in hell, then the last room was always Jesus in heaven begging you to make the right choices in life. One year I went in high school, it was about a super depressed and bullied kid who lost his battle with depression, woke up in hell, and then met others (like a girl dressed in skimpy clothes)… it was a wild time, and I’d love to hear Papa’s reaction to things! It all seemed normal when I was in it, but now that I’m out it’s always fun to see people’s WTF reaction to the stories.

I’ve asked a couple of doctors I’ve had over the years about an issue I’ve been having with pain, and they either dismiss me or won’t even take my complaints seriously.

I (31F, 5’ even, ~150lb) have been having these painful episodes since I was in high school (5’ even, 98lb), but the past few years they’ve been feeling more and more debilitating. I struggle to explain them to my doctors in terms that they’ll take seriously, or that best describe what it feels like. Here’s more or less what I find explains my experience best.

Usually it will start with mild hypersensitivity of my skin and airway. Regardless of how warm it is where I’m at, this feels like walking outside in the winter when windchills are in single digits. It hurts and burns everywhere that moving air or loose fabric touches, and it feels like I can feel every branch in my lungs, so much it make its painful to take much more than a shallow breath. Then the aching starts, usually major joins/muscles (hips, back, neck, thighs), which spreads more to sinuses and near borderline migraines like pain. Finally chills set in, and I can’t stop shivering even though it hurts. The pain tends to settle between the bottom of my ribs and the top of my pelvis, with the worst being what I think is kidney area. The only way I can get through it is laying down, completely still and fully covered by a heavy blanket to block out any moving air. Things like Excedrine don’t even touch it. It feels like having a severe flu, without having the flu. My temperature never gets above 99.5, even after being fully cocooned in blankets for up to several hours. I try to stay as still as possible, because each little movement hurts so bad, to the point that I’m trying to judge if the pain of the position I’m in is worse than the pain to move… and normally it’s not, so I choose to keep the lesser pain. Once the worst passes, I’m left with sore muscles and joints, like I’ve been doing intense exercise.

There’s the kicker, it only lasts 12-24hrs from start to finish, with the worst part (as described above) lasting 1-3 hours. People used to tell me that if it felt like the flu then that’s probably what it was, except I never had any flu or cold symptoms other than the pain. Since at-home covid and flu tests have become available I’ve tested multiple times when I’ve had a flair, and they always come back negative for both covid and flu. I’ve also had doctors say I was just “stressed” and “holding on to tension”, but this happens regardless of what going on in my life, and other than it’s recurring nature, each flair is in no way chronic. I finally had a physician recently get annoyed that I was “complaining about nothing” and finally tested me for autoantibodies during a flair I just happened to have during an already scheduled appointment. Those tests came back negative.

I think they may be under the impression I’m trying to get pain meds, but I absolutely am not! Ive seen several family members go down that road and have no desire to follow. The only time I’ve taken any was when I had my wisdom teeth out, and they triggered my migraines, so I only took them the first day. I’m not looking for a solution for after it hits, I’m looking for an identification so I can maybe take preventative steps.

Current Meds/Conditions:

Diagnosed ADHD (unmedicated, because my GP thinks I just need to go on more walks to “quiet my mind”)

Depression (Sertraline 150mg)

General allergies (Xyzal 5mg)

Diagnosed Migraines (unmedicated, because walks apparently solve everything… OTC Excedrine Extra Strength: Acetaminophen 250mg, Asprin 250mg, Caffeine 65mg)

Past Medical Issues:

High Grade full bowel obstruction at ileum due to inflammation of unknown origin. Resolved with general antibiotics and anti inflammatories in hospital with NG tube. CT showed my small intestine were so inflamed and distended that they were close to my large intestine in diameter. I was kept on a surgical floor in case of rupture.

On a pain scale, I’d say that the obstruction was a 9, and the worst this pain gets is probably a 7.5 during the peak.

Please tell me I’m not just crazy…