http://www.youtube.com/watch?v=xtrEN-YKLBM
Some music to listen to while you read. The lyrics are apt for how I've felt lately. (If you don't like the song, read the lyrics I'm going to post at the end.....please)
These first couple of posts....blogs....blurbs? may not be the most positive because I'm going to be venting. Fair warning. This too shall pass. I kind of feel like the Black Knight in the Monte Python movie in a way though. I'm not dead yet!
First off, people keep saying, or I should say, posting on Facebook (more about that in another post), "hope your better!" or "are you better yet?". Clarification for everyone. I have multiple, CHRONIC, LIFELONG diagnosis (diagnosii? is it like rhinocerii?). I'm not going to get over this. I'm not getting better. It's not going to go away. I'm not going to die from any of it, but I'm also not going to wake up and be better tomorrow. If I'm lucky, and I pray that I am, I'll find the right combination of doctors, therapies and medications that work and I can afford (KEY...that I can afford) that will manage my conditions and bring quality back into my life. Right now, I don't have it. "It's the terror of knowing what this world is about......"
I have been diagnosed with myofascial pain syndrome (severe), chronic fatigue syndrome (severe), fibromyalgia (severe), and IBS (severe). I've been told that I have neurally mediated hypotension, 99% certain, but until I can get the testing done I won't have a confirmed diagnosis. There are several other conditions that I don't remember the names of that have to do with how my system processes and metabolizes which accounts for the severely low vitamin D levels, and most likely may play into why I have trouble losing weight (not why I gained it!). (I've been on supplements for the Vitamin D for quite some time, so far there's been a slight increase in these levels). I'd have to pull out the paperwork for the other conditions - I admit I don't remember the names. Oh, chronic migraines have been in there for years, also severe (no shit sherlock there, huh.... *L*) I've had a couple low results from blood tests that my regular doctor is supposed to be looking into, however she's failing miserably at her job (don't have the time to go into THAT today!) that most likely is also factoring into all of this.
A lot of people have heard or read that fibromyalgia isn't a real condition....it's "all in your head". Bullshit. It's real. It's more than just an ache. There are some really good articles and websites out there - (I put a link to a good one where I wrote about what fibromyalgia entails.) (Here's one of those snarky comments that will go away with time, and it doesn't apply to all of you so for those of you who have done this, I'm sorry and it doesn't apply to you. When you find out that someone you love is diagnosed with something that you don't know anything about.. RESEARCH IT. Don't assume that they're ignoring people and subsequently ignore THEM. Don't ask them two months later what's going on. Use google! Go to the library! Call them THEN. Send a card. Send flowers. Do SOMETHING. But don't ignore them. They don't feel good. They're tired, they're sick, they're probably sleeping on the couch or in bed or curled up in a ball. They need comfort and support, and they need help and support. Guess what? Two months later? They STILL feel like crap, and still need help. The only difference? They have to drag their butt out of bed every day, get dressed and go to work. And the two people who have been calling them? They are soooo worn out from being the support system. The online friends, the half-dozen who they have never met that live 1000 miles away, or literally half a world away, can only do so much using Skype every other week because 20-hour time zone differences make it really hard to communicate. When a snarky comment like this is posted.....that person who is sick REALLY needs your help and support. OK, snarky comment done.)
I'm paraphrasing.... fibromyalgia is widespread musculoskeletal pain. It affects ligaments, tendons and muscles everywhere in the body. (For me, this includes the "hollow cavity" area, meaning the area below the diaphragm down to the pelvis. It was cramped, like a Charley horse kind of cramp. literally, for weeks at a time. Brilliant. But I digress.....) Fibromyalgia isn't classified as a disease, but a "condition" that causes many different symptoms. The symptoms affect all systems of the body. The name fibromyalgia comes from "fibro" meaning fibrous tissue (such as ligaments & tendons), "my" meaning muscles and "algia" meaning pain. (I find stuff like that really interesting....words fascinate me....I'm a dork *L*.)
Aside from the aches & pains that the majority of people with fibromyalgia have (muscle stiffness, soreness, burning, twitching,), it can often cause other associated symptoms such as sleep disorders, fatigue, morning stiffness or general stiffness that can last all day, irritable bowel syndrome, vision problems, nausea, cold and/or heat sensitivity, cognitive or memory impairment, anxiety, skin complaints, muscle twitches and/or weakness, depression, multiple chemical sensitivity syndromes, TMJ syndrome, memory loss and chest syndrome. These symptoms can overlap. (not an inclusive list, but a pretty complete one. NOT my list, that will come later!)
Who is lucky enough to have fibromyalgia? It can affect people of all ages, races, and backgrounds. It affects more women than men, especially during child-bearing years. (That really sucks....) The elderly and children can also be affected.
The symptoms I have that affect me daily are muscle pains, aches, stiffness & soreness, burning, morning stiffness (sometimes all day), evening stiffness, vision problems, fatigue (this is different from the chronic fatigue that I've been diagnosed with, believe it or don't *L*), nausea (yea for random vomiting!), sleep disorders, weight disorders (I've lost 40+ pounds since February), chronic headaches (not migraines...when I don't have a migraine headache, I have a generic headache), chemical sensitivity (perfumes and scents make me sneeze up a storm and my eyes itch, much more than they used to), cognitive/memory impairment, anxiety, depression, muscle twitches & weakness (drop stuff all the time, have a hard time opening windows, noticing a LOT of this. Goal ...pick up weights at the store and hopefully build some strength back up?), cold and heat sensitivity and memory loss. I think that's all..... They count the things like the needle sensations, or feeling like someone is prying my kneecaps off with a spoon as "widespread pains".
I posted the stuff about fibromyalgia first because it's the condition that most people have heard of, and it's the one that is causing the most widespread pain. http://www.fibromyalgia-symptoms.org This is a great webpage that I found. I used it for myself - I went through pretty much every page. You don't need to do that, but you might want to look at the pages for symptoms. I used it as a reference when I was writing the bits posted above.
Chronic fatigue is well......being tired. *L* A lot. "Severe, continued tiredness that is not relieved by rest and is not directly caused by other medical conditions." Again I'm paraphrasing the rest. It's severe enough to keep you from participating in other activities (like....leaving the house to get toilet paper >.> ), not relieved by bed rest (eg. sleeping), extremely tired for more than 24 hours after exercise/activities that would normally be considered easy (a day at work?), forgetfulness, confusion, concentration problems, joint pain but no swelling or redness, irritability (I HATE this one, really...I do.), muscle aches (how do I decide if it's an ache from this or the fibro? I toss a dice *G*), muscle weakness all over or in multiple locations not explained by any other disorder (OK....maybe this is to blame for suddenly having trouble opening the windows? cause really....they were easy to open two weeks ago and EVERYTHING can't be from the fibro....) and sore lymph nodes. I have all of these.
IBS = Irritable Bowel Syndrome. I said I won't go into details on this. It's severe. I ran out of TP yesterday. We'll leave it at that. O.o
The myofascial pain syndrome has a lot of overlap to both the fibromyalgia AND the chronic fatigue. The part that differs is that, for me, my jaw and neck (and what feels like the back of my head) muscles are always rigid and taut. I have limited range of motion in my jaw and neck joints. It causes popping and clicking (LOUD) in all of my joints, especially the neck. I've noticed that I need to "pop" my neck and upper back - like they're out of alignment, a lot. I don't know if this is related, the feeling like it's out of alignment - I see a "regular" physician who specializes in these conditions in October. I plan on asking then. I'm guessing it is related.
The one that's the most annoying to me, and probably of the most concern is the neurally mediated hypotension. ( http://brendashue.tripod.com/nmh2.html) If I understand it correctly, my brain isn't talking to my heart much anymore so my blood pressure isn't being regulated as it should be. The hypotension causes the dizziness that I'm experiencing, and the feeling that I'm going to faint (and the potential that I CAN faint). I'm supposed to drink a lot of fluid and have a high sodium diet. The foods in the high sodium diet are exactly the foods that I'm not supposed to have because of the migraines. Until I get the tilt table test, my regular doctor won't prescribe anything. She put off figuring out where to get the tilt table test for weeks - I had to raise a stink over the phone. I have the appointment with the cardiologist on October 10th, and she decides if I get the tilt table. Then I go back to my regular doctor, who doesn't know what she's doing.
Under Pressure - David Bowie & Queen
Pressure pushing down on me
Pressing down on you no man ask for
Under pressure - that burns a building down
Splits a family in two
Puts people on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - gets me higher
Pressure on people - people on streets
She been around
Kicked my brains round the floor
These are the days it rains but it never pours
People on streets
People on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - high higher
Turned away from it all like a blind man
Sat on a fence but it don't work
Keep coming up with love but it's so slashed and torn
Why - Ooooh
Insanity laughs under pressure we're cracking
Can't we give ourselves one more chance
Why can't we give love that one more chance
Why can't we give love
Give love give love give love give love
Give love give love give love
Love's such an old fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure
Pressure
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