I Found an Interesting Article

Joint Hypermobility and Joint Hypermobility Syndrome By Alan G. Pocinki, MD, PLLC

Once I read this, a few things clicked into place for me, diagnosis-wise.

It would appear that the digestion issues I've been experiencing could be due to high levels of adrenaline. The adrenaline cycle is a vicious one though.

          "Many of the autonomic nervous system problems associated with hypermobility are characterized by an "over-response" to physical and emotional stresses, which often leads to fluctuations in heart rate and blood pressure, as well as digestive and respiratory symptoms. Sickness, pain, emotional stress, and even fatigue itself can raise adrenaline levels, and acute stresses can trigger adrenaline surges, leaving you jittery, anxious and even more exhausted. Worse, such surges can trigger an excessive counter-response, causing nausea, sweating, lightheadedness, diarrhea, and of course, even more fatigue. Even sensory stimuli, such as bright lights or loud noises, can trigger an exaggerated or over-response, causing sensitivity to light and sound."

          "...when hypermobile people try to fall asleep, the stimulating effect of their extra adrenaline may keep them awake. If they are able to fall asleep, they may continue to make too much adrenaline overnight, giving them a shallow, dream-filled sleep, so that they wake feeling unrefreshed. Pain further stimulates adrenaline, making restful sleep even more difficult. When studied in the sleep lab, they often have a relative and sometimes complete lack of deep sleep, and/or increased number of sleep-disrupting "arousals." Poor sleep can cause irritability and fatigue, which in turn can trigger more adrenaline (to try to overcome the fatigue), which in turn can make sleep worse. This vicious cycle can eventually cause serious disability."

So, the fatigue, adrenaline, pain, adrenaline, fatigue cycle continues unabated until you burn out, or potentially damage your adrenal glands. It's a positive feedback loop (if you can remember high school chemistry), and the worse it is, the worse it will continue to get, until it is interrupted. Most doctors would first recommend changes to diet, exercise, and sleep patterns to see if that would help balance things out. Since a lot of EDSers have problems when they change their diet and exercise, and are mostly unable to get restful sleep, the next course of action would be some sort of beta blocker, in combination with a nighttime pain reliever, which will help to break the cycle starting with adrenaline, which should then allow for restful sleep, leaving you in less pain when you wake refreshed.

Now all of this may sound wonderful; start me on some beta blockers, and I should be fine, right? The hardest part will be to find a doctor willing to prescribe them to me. Also, finding a doctor willing to diagnose me with POTS (tilt table test). And have an upright MRI of my C-spine (to conclusively check for Chiari).

Ugh...

I can see the silver lining, but it is surrounding a very large, dark and ominous cloud.

My Doctor May or May Not Have Been Right...

My wonderful doctor said that 2 of my symptoms have nothing to do with the other symptom, which may or may not be due to an unidentified illness which I may or may not have; but here's a prescription for one of the symptoms. And the best part? It's only $70.00 for a month's supply! (I sweet-talked my favorite pharmacist into giving me a free trial sample [which he sweet-talked my doctor out of] to see if it would even help before I paid for the full prescription though).

So the symptom I was medicated for was excess acid production. He prescribed a really strong antacid, and told me that it would stop the pain when I ate. He was right about that one.

I still couldn't eat anything though, because of my other two symptoms; lack of appetite, and nausea. But luckily, I've been self-medicating for those two for quite a while. I frequently have to ingest marijuana for my all over body pain, and guess what? It gives you the munchies. Which sucks sometimes, but when you've been too nauseous to eat, and eating causes pain, and you have no appetite, smoking some MJ can really be beneficial. It's the only way I was able to eat anything last week.

After only 2 days on the antacid, the severe pain immediately after eating went away. Three days later, I found my appetite, and the nausea settled down. Now I'm back to having no appetite, but the nausea and pain are still gone, so I can force myself to eat at least.

This was a really weird illness... It felt like having a stomach flu, except I didn't have the fever, or excess body aches that would come along with it.

My body is confusing.

Still waiting for that G.I. appointment. Only about a year away now. Maybe as few as 4 or 5 months. So, hopefully I'll be able to find out if I have one major gastrointestinal issue, or if I have a couple different things going on, but hopefully the professional will have some answers... However unlikely it seems...

Tummy says "GRRRRRR"

My stupid tummy has decided that the only thing it wants is coffee.
And peanuts, which I'm allergic to.

And egg nog.

But everything else I put into my tummy just hurts, and makes me nauseous. Including ensure.

I've eaten less since Thursday last week than I would usually eat in a day. Which is already less than what "normal" people eat in a day. The coffee seems to be keeping me alive-ish for now, and I have been force-feeding myself every day, because apparently the people in my life care about me enough to want me to eat (even when it causes excruciating pain and nausea).

I tried to go to the doctor after work yesterday, and they recently changed their hours, only accepting walk-in patients until 5pm instead of 9pm. Which means, that by the time I get off work at 4:30, they've filled the spots, and are no longer accepting any more walk-ins. Let alone 5 minutes later when I arrive at the doctor's office.

Being impatient as I am, I proceeded to go to the next nearest walk-in clinic, which also just changed their hours to 5pm, and were already fully booked for the rest of the day.

I'll be taking some time this morning to go to the doctor.

I am not feeling any kind of hope that the doctor will actually DO SOMETHING. I'm pretty sure I'll just get the whole "there's nothing wrong with you, quit whining" that I've become accustomed to.

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Ooooh... I just went to the doctor's office, which has posted walk-in hours from 9:30 to 5:00. There's no doctor in the office. I signed in at 10:30. They said the doctor would be in in about 45 minutes. 5 minutes later they tell me the doctor won't be in until 1:15, as he's locked himself out of his house.

But, I do have an appointment now for 1:30.

Optometrist

Over the last few weeks, I've been having problems with my left eye, such as blurry vision, eyelid twitching, dryness, increased light sensitivity, and such. It got to the point where I was concerned there might be a real problem, so I made an appointment with an optometrist.

He was a cute young guy, and actually knew what I was talking about when I told him I have EDS. It was truly refreshing. Due to the EDS, he recommended a full work-up, and dilated my pupils, and did the yellow dye drops to check for scratches, and shone really bright lights into my eyes at all angles, and then again, because he thought he might have seen something.

Apparently the puff of air they blow in your eye to check for pressure showed that I have a bit higher pressure than they like to see, and he wants me to come back in the next few weeks for another test.

The test he wants me to take is a baseline test to check for the development of glaucoma. So that's fun. I do not have glaucoma at present, but I do apparently have enough of a warning sign that he wants a baseline test, to check for any progressive, yet slow, changes.

The blurriness is apparently due to a clogged tear duct, and I should add more omega-3's to my diet, and use eye drops. The other thing he found that could be attributing to the dryness and blurriness is that my left eye doesn't close all the way when I blink. Kinda weird.

Cold Season, As Usual

I've been sick for about 3 weeks. Not anything too bad, but energy-sucking nonetheless. It's been cold-type body aches, chest tightness, coughing, can't get to seep, etc. and I've had enough of it.

I would prefer the types of colds I got as a kid. The ones where you're really sick for 3-5 days, you take those days off, lay in bed, eat some soup, then you feel better. Not this really mild, but horribly exhausting blah that I've been getting the last few years.

Also, I have a new twitch in my left eye, which seems to have developed along with pretty bad light sensitivity and dryness.

It turns out that my suspected dislocated rib/sternum, was in fact 2 dislocated ribs at the sternum. They have since gone back in, and popped back out, and gone back in again. The shoulder twitching is not getting better, and my joints seem to be getting looser and looser.

I've been dislocating both shoulders every night while I'm asleep, along with my left collar bone, ribs at my sternum, and at my spine, both hips, jaw... There is no position I can sleep in without dislocating something. I've been piling my bed with pillows, and comforters, and blankets, and nothing seems to help. Even going to bed heavily medicated doesn't do it. It feels like so many things would be so much better if I could just sleep.

I spent my entire allotment of spoons this weekend on making stew and cleaning the dishes. The rest of the time I spent flopping around like a fish out of water trying to get comfortable, and snoozing on and off.

It's time to start mattress shopping. I need to go lay on about 100 different mattresses for a bit to see if aything is comfortable.

I'm a Dumb@$$

Just thought you all should know, my spiffy toe shoes made me cocky, and I had the brilliant idea that I could run... Turns out, I can run. I just shouldn't run. Ever again. Because holymotherofgod it hurts like hell.

So I ran on Sunday night, about half a block, because I was on my way to work to supervise an after-hours lot move. I was doing the nice thing, having a vehicle re-parked so it wouldn't block our gate on Monday morning when all the cars come in. My hubby had our car, so I had to walk to work, and it took me longer than I thought it would, so when I was about 3 blocks away, I decided to run for it, because I didn't want the tow truck to leave without moving the vehicle.

You know, the old saying "no good deed goes unpunished," is pretty accurate.

Also, it astounds me how utterly, utterly stupid I can be some days.

New injuries: possible dislocated/subluxed sternum; or one of the ribs dislocated where it attaches to the sternum. Either way, extremely painful, and it has me slightly worried. At first I thought it was just the pressure of my stupid bra between my boobs, but I looked, and it wasn't red, or bruised looking. It is just extremely sensitive to pressure right now, and it feels like there might be a lump there that wasn't before (but for now I'm just assuming it's either the end of a rib, or swollen tissue).

I had a great few minutes laying in bed with both hips, both shoulders, an ankle, and a collar bone dislocated or subluxed. That was kinda painful...

I spent all day yesterday pretty drugged up on pain killers. And my drug-induced haze only brought my pain down to about a 5 or 6. Hooray for medications that work! *Rolling my eyes* Grrr...

But the good news is: that really annoying vertebra I haven't been able to crack in forever - finally cracked when I was trying to manoeuvre my sternum and ribs back to where they're supposed to be.

Can't Sleep... Clown Will Eat Me...

Not quite, but between the lovely ghost, and the psychotic cat, and the two babies that live downstairs, and scream at the top of their lungs 24/7, I haven't been getting the rest I need.

Also, my bed is too hard, and 3 layers of down comforter are not enough softness.

The ghost, in the last few weeks, has broken many things electronic, including 2 laptops, 1 desktop, a DVD player, and a something... Brain fog will not permit me to tell you... The ghost has also stolen my dad's book... which is really not nice.

Then there's the mysteriously opening, and closing of doors, the human voices which could only be coming from within my house (when I know for a fact that I'm alone), as I would not hear them otherwise, etc.

My hips and knees are still adjusting to my awesome shoes, but I haven't had to use my cane, and the pain seems to be the good-muscle-building type, instead of the bad-injured-something type.

I seem to have done something to my neck, but damned if I know what it is, or how to fix it. Hot, cold, and massage don't seem to have done anything, and the muscles are hard as rocks. I also have a vertebra in my spine which is not aligned correctly... So I'll have to call my chiropractor and set up an appointment sometime in the near-ish future.

It seems like that's all for updates, and interesting stuff... Really annoying, as every time I have a blog post idea, I'm not around a computer, and all the little notes I make just go *poof* and are eaten by gremlins.