pain is a 4 letter word

pain is probably the one thing i really gloss over the most. it is hard for me to explain what goes on with chronic pain- it is different than acute pain. chronic pain is defined by doctors as pain that lasts longer than 6months. the last time i had a pain free day, i was 15yrs old- i'll be 33 in october. my relationship to the way i experience pain is totally different than the average person. and because i've had chronic pain for so long, i experience acute pain differently now too.

for the record, i do not enjoy pain. it is not something i seek out, or get off on in anyway. but just something i had to figure out how to deal with at an early age. i do consider myself lucky that i had to figure it out early- if i was whopped with all this now, i don't think i'd be as tolerable. also- it has been brought to my attention over the years that i have quite a pain tolerance (again, i don't enjoy it- i just have a large capacity to "ignore" it). this gets me into situations with doctors sometimes. when i was 15 they decided that i "was not acting like i was in pain" and i was sent to an adolescent psychiatric unit for because they figured i was faking it. that didn't go very well- having people tell me this very real pain i was in was just in my head & getting doped up on medications i didn't need to be on ended up in me being suicidal & transferred to the chronic pain unit after only 18days. looking back, i am probably the only person that can say she was released from a psychiatric unit for being suicidal. but that is another story all together.

so why am i in pain? well, each of the diagnosis i have contributes its own little part. to start: when discussing pain it is usually "measured" on a scale of 0-10. 0 being no pain, 10 being the worst possible pain you can imagine. these days, my average overall pain level is about a 6- which quite frankly is awesome. at 15 i was at a 9.

Reflex Sympathetic Dystrophy (also known as Complex Regional Pain Syndrome) is where the chronic pain started. EDS had given me some joint pain, but nothing like the day-in-day-out smack upside the head that RSD started. it began after i had a minor surgery on my left foot- they removed a benign fatty tissue tumor called a deep granuloma annularae (good luck finding info on those, they are different then surface granuloma annularae & had to be sent to a Naval base for identification- where the samples still are held if you'd like to look at them.) basically, these little fatty tissue tumors were developing on pressure points- the ones in my feet needed to be removed because it was like walking on a rock all the time. i was awake for one of the surgeries & saw one- it looked like this little clump of mashed potatoes, but it had a hard center. in total i've had 7 surgeries to remove these. so the surgery that started the RSD, was to remove one of the lumps- however as it had grown it had tangled up in the nerves & tendons which they had to cut to get it out. i'll go more into RSD later- for now just the pain issue about it... the pain started at the surgery site, well after it should have been gone. it spread across my foot, then up my leg. currently, my left leg hurts 24-7 in a range from a 6-9 in this very achey sometimes on fire burning pain. it hurts from the tip of my toes, up past my hip. RSD also effects my right arm, from a 3-6 range.

Ehlers Danlos Syndrome- again more on the other bits of it later, EDS causes my joints to hurt. not 24-7, but randomly. they dislocate easily, which is painful (both popping out & popping them back in) mostly these days they just sublux (partial dislocation). i can often feel bone on bone as the cartilage is worn down- mostly in my hips. and when i say joint- i mean EVERY joint in my entire body. all the little bones in my hands & feet not just "big joints" like knees & shoulders. joint pain ranges from a 2-9, and each joint is different every day so it is really hard to put a number on those. most of the time they ache & feel creaky, or sometimes it is this really sharp stabbing pain.

Fibromyalgia/Hyperadrenergic Postural Orthostatic Tachycardia Syndrome aka POTS- i'm grouping these two, as they are both caused by sympathetic nervous system agitation (as is RSD). there is a lot of overlap in symptoms with these, and one doctor has also hypothesised that they are actually the same disorder- just different ends of the spectrum. the fibro end of it mostly effects my muscles. you know when you over work a muscle & it is sore the next day, to over simplify it- that is fibromyalgia. except overdoing it might just mean going to the grocery store. also, it isn't just over doing it, i end up with increased muscle pain if i am still for too long- which can just be the length of a movie. and also different from when you exercise- it isn't just one muscle. it is every muscle- even the ones on my scalp. fibro/pots has also really effected my tender spots- fibro gets diagnosed by a doctor touching these specific spots on your body & asking if it hurts, i am at a point now where touching me anywhere hurts. and it isn't just a little ouch... because the pain signals are all screwy, it doesn't only hurt more than a little bump should- it keeps hurting- long after the touch has gone away. so when someone bumps their cart into me at the grocery store or i stub my toe, it isn't a few minutes that it hurts- it can be a few hours. now some of you are smart... you are all of a sudden realize that you touch me & hug me all the time. well, actually yes that does hurt. but don't stop hugging me! just be aware of it & don't smack me hard on the back. also, touch that i can "prepare" for (i kind of tense up a bit) goes easier than unexpected touch. fibro/pots also makes my nervous system a little wonky- and some of this stuff gets really hard to describe- an entire limb will fall asleep while i am walking/sitting- and not just a little, like POW, the whole limb goes to that entirely numb but painful asleep feeling that you get when you've been sitting in one position for too long but it happened in seconds. i also get these waves of sensation, kind of like the chills. but it is deep in the muscle. sometimes my muscles will actually just start twitching for no reason. but the waves are really uncomfortable. they often go along my entire back for hours or days. also, loud noises can be physically painful- again, the unexpected ones are worse. it is kind of like my body stopped filtering out the unnecessary reactions to external stimulus- it can be fluorescent light or obnoxious perfume that lingers in a parking lot. i don't just notice it & move on, my entire body reacts to it. fibro/pots pain ranges from 4-8 & is all the time. i have been in a bit of a flare up since friday night, so 7-8 & those waves have been on constant. this makes sleeping difficult (or rather more difficult, sleeping could be its own post) which of course lack of sleep makes everything worse.

but what about those wires... don't they help with pain? well, they aren't working at the moment. and this post is long enough so i'll get to that later.