Hi, Megan. You've suffered through so very much. Yet you keep going. You are most likely the most courageous person I've ever seen here. It must have been exhausting to even write out your long and very detailed post.
Maybe we can figure some ways to halt the progression or even reduce the severity. Most everything seems inflammation related, of course. You've got it everywhere. I bet your ESR and CRP will be very high.
"In my teenage years I dealt with quite a bit of joint pain in my knees and hands..."
That could be 'reactive arthritis'. Do you recall if you had a very bad cold, or stomach bug, or other infection before everything started?
"Fluctuating between chronic constipation and diarrhea also constant bloating and abdominal pain."
Problems with gut microbes can drive bodywide inflammation. Bad microbes can produce harmful biochemicals. They can also lead to 'leaky gut', which is increased intestinal permeability... which means that molecules which shouldn't get into the bloodstream do get into the blood, leading to immune reactions.
"My left foot is often swollen and it turns dark purple. I usually notice this when I am cold."
As in Raynaud's.
"I am itchy. So itchy in fact that it sometimes drives me completely mental."
Likely that's from histamine made by mast cells (powerful immune cells that can create many many bad effects when they go haywire). Aberrant mast cells might also possibly create connective tissue disorders, which can result in joint problems.
"I take a lot of Advil and Tylenol"
Ibuprofen can create leaky gut, yet you maybe need it for now. Hopefully, the Lyrica will mean you can cut back on the ibuprofen.
"I get a raised red rash on my cheeks and across my nose."
Lupus? If so, that can cause so many many many symptoms. It's called the disease with a thousand faces.
That's for starters. Are you familiar with these concepts?
"By 2017 I woke up one morning with this feeling that something was stuck in my throat. I have not had one day since that I had any relief from this."
Possibly Eosinophilic Esophagitis.
"I trip over my words"
"constant throbbing in my left buttock"
Pyriformis syndrome? Or is it located at the greater trochanter?
"mentally I needed to stay active"
Absorbing all of this might suffice :)
All of that childhood info is very relevant, Megan.
What do you say to trying the following? Let's try to lessen the Piriformis Syndrome greatly and so we can have an early victory.
One time, I was ramping up exercise and I developed PS. I thought I would just tough my way through it. That made it get much worse, to where upon standing I would get enough pain to make my whole body break out in a sweat. Sound familiar about the standing?
Eventually I learned that exercise was out. So was stretching, which just inflamed the nerve more. What worked was the tennis ball, then days later a Lacrosse ball - though done very intelligently rather than according to some rigid instructions. I would do the ball for literally hours per day while reading. The best coach on this is Goldilocks :) I would also stand up very very slowly. I would eat standing, and so on.
Getting severe pain while using the ball means you are just inflaming things worse. I have seen advice which says to actually sit on the ball, which seems insane to me. You can try icing.
You can exercise your whole body, but not the left leg at all.
Willing to try?
Note that you will in most things have more inflammation, even with PS, because you are you. Any advice you see amongst normals probably doesn't apply to you. Always keep that in mind.
"...my left Pyriformis... I guess I can't be certain where the pain is actually stemming from"
Put a phonebook on the bed, then the ball, then you. There will be no mistaking the center of the pain, if it is indeed PS. You don't have to necessarily use the ball on the center of the pain if it hurts too much at first, though that is the eventual goal. Goldilocks knows that the aim is not to show how tough you are, but instead how smart you are :)
Stretching is bad while the syndrome is ongoing, though it can and probably should be used afterwards in order to help prevent recurrence.
"I am assuming my treadmill is still ok?"
I don't think so.
"Some of my core exercises really flare that side up as well, I think maybe there is a few things I should back off of for awhile."
Yep, back off. And please never make yourself nauseous by pushing things.
"I also use my foam rolls, should I stay away from rolling out that left side?"
I would guess that wouldn't help the PS anyway.
"I usually just do my IT bands..."
Are you generally inflexible? If so, there might be a connective tissue disorder, which goes along with a certain autoinflammatory condition. Just as being hyperflexible does.
"Ill keep you posted :)"
I sure hope you do :)
Only you can know what causes bad pain at the PS location. Rocky is a bad coach, Goldy is good :) "No pain, no gain" is wrong.
"I am definitely a bit of an overdo-er, always have been."
Good, let's channel that into absorbing knowledge until your head almost explodes :) Almost.
"I also had Mono in early high school which my mom said, put me on my ass for weeks. I do vaguely remember the lymph nodes in the back of my head were so big and sore I could not lay down."
I believe that signals that you have an overactive immune system.
Do you react very badly to bee stings? Do you get flushing/blushing episodes?
"I suppose I do get episodes of flushing, yes. Sometimes out of no where I do get a low grade fever as well."
Megan, are you familiar with MCAS, the mast cell disorder? I'm thinking you might be, since you say you had wondered about bee stings.
"I used to be flexible, when I was younger."
Then I suppose we can write off another immune mystery condition, called Ehlers Danlos Syndrome.
"Since my late 20’s I am not flexible at all. Everything just feels soo tight."
So that is muscular and not from the joints?
"My skin is sensitive. A simple scratch or bump causes so much pain it takes my breath away."
Let' try a simple one: can you write on your sternum with your fingernail? (dermographia)
Dermographia aka dermatographism would most likely be from Mast Cells in your skin releasing too much histamine, too easily. MCs manufacture and release more than 200 biochemicals (called mediators), and they can create lots of varied problems when being overactive. We can try using "mast cell stabilizers" to stop MCs from going off too easily. MC stabilizers can be drugs, or plant extracts like quercetin.
MCs also have have over 100 different types of receptors in their surface, which are something like sensors. So we can try using blockers (like H1 and H2 antihistamines), which occupy the receptors but don't set them off - like jamming a fake key into a lock so that a real key can't come along and operate the lock.
MC disorders are autoinflammatory, not autoimmune, btw.
Here is a photo:
What about topical antihistamines for skin itch?
Then also trying topical cortisone.
"I do not feel or see any raised areas"
It doesn't have to be raised, just redness.
Did you also try H2 blockers, which are the antacids like Pepcid?
"I keep a wellness journal along with documentation of everything I consume food, drink and supplements day to day looking for links."
Remember that it can also be a component of food, like histamine or salicylates. There are several lists around of hi/lo histamine contents in food.