There’s a lot of people writing me emails wondering how I’m doing, that I haven’t been writing back to. I just am overwhelmed with life, and illness, and trying to cope with the day to day stuff, that I don’t have the energy to keep up with my correspondences. It’s been a rough weekend symptom wise.

It’s scary not knowing what is wrong with your body, but knowing things are definitely wrong. I’m pretty sure I don’t have anything deathly, and I’m dealing with something along the lines of fibromyalgia. I have so many things wrong with me, and I get so many weird symptoms that come and go. It’s enough to make you think you’re either already crazy or going to head there fast.

I get pain in places that I haven’t had pains before, and they stay sometimes a few seconds, sometimes a few minutes, sometimes a few hours, sometimes a few days. I’ve been getting a lot of pain in around my lower ribcage and lungs… can’t tell if it’s muscle, or connective tissue or what, it’s odd and achy, and has been coming and going a lot. I had one little burst of skin/nerve surface pain over my elbows the other day, I was rubbing them lightly because I was cold. I feel cold a lot now. And all of sudden it was like I was rubbing hot pepper oil in paper cuts on my elbows, and then it was gone as fast as it arrived. Those are just the most recent or uniquer aches and pains.. but I always have something, or most things hurting and/or stiff, or something going on in the body somewhere.

Sometimes I wake up with aches somewhere, and reposition, fall back asleep, and they’re gone.

Sometimes pain is triggered from doing something like pushing off the sauna bench, and the pressure on my wrist triggering pain and inflammation. An action that used to not stress that area, all of a sudden being a no no… sometimes I can take my body weight on my wrists being bent, like doing a push-up, but other times, just a little weight on the joint, and wham.. sore.

I get cold spells that I can’t get warm from, tonight I had the little space heater blowing on me full blast from 3 feet away, pre-illness it would feel almost burning hot. Tonight I was freezing, the temperature in the house was set high, at 22. I was wearing two sweaters, heavy pants, socks, and two thick blankets on top of me, with the heater blowing on the whole thing… I should be cooking, and I was shivering. I felt cold all the way through. It upset me deeply for a moment and I pulled the blankets over my head and had a short cry. Just remembering it now has me teared up again. It seems when I get heavy physical symptoms, like this weekend, I also get heavy emotional symptoms.

I don’t think it’s just the natural reaction to being ill and not knowing just exactly what’s wrong, I believe it’s partly biochemical, that whatever is ‘off’ in my body is effecting all systems, including neurology, which plays havoc with mood.

It’s one of the things that makes me suspect I have fibromyalgia. The reading I’ve done shows that there are some strong links to other illnesses and fibromyalgia. Major depression, is one of them. So is IBS (Irritable bowel syndrome) something else I have. So is a form of cystitis - where you get urinary symptoms, irritation, etc, that can feel like a bladder infection without infection being present. I have a history of bladder infections, though many of them have turned out not to be infections. I always assumed that things must have cleared up by the time tests were done, or didn’t think anything of it. I also have a history of other mysterious pain ailments in my life. I had about a year where I had horrible debilitating shoulder pain that would come and go sending me to the emergency, it never was diagnosed. I also remember having ‘growing pains’ as a kid in my legs. Something that is common in people with fibromyalgia. I had so much fatigue and loss of energy with and before my depression that I associated with being a symptom of the depression that I now suspect is more likely chronic fatigue, clustered in with all the rest in the neat little bundle of illnesses that tend to go together in people with fibromyalgia.

I haven’t seen anything linking these cold spells I get though with fibromyalgia. I don’t know what that is about.

My body is like a weird foreign place, that I am daily experiencing culture shock in. It’s disturbing to feel cold and not get warm, to feel all the aches and pains and weird feelings I feel in my body. I sometimes, well, often, feel itchy in places, or feel like something is scratching me, like a clothes label… when there’s nothing there to do it. I’ve had little blisters appear under my nose.. they’ve gone now. Though for a few days last week I had a few little blisters come up on the backs of my fingers… they’ve gone now.

It’s frustrating, to not know really what’s wrong, even if they hang the label fibromyalgia on it, what does that mean really? It doesn’t seem to be really understood yet what causes it, why it happens, what it’s really all about. It’s a sucky diagnosis. But those are my options, no diagnosis, which is frustrating, or a selection of really crappy partially understood medical conditions I may have.

I want to be well. But I have no diagnosis, so of course.. no prognosis, no idea where my health is heading into the future. I’m frantically trying to control all the factors I can. Eating a really clean diet, strictly controlling what goes in, trying to control what comes out. No more pain killers, the only ones that work are the narcotics, and they constipate me, something I can’t have because with my IBS I’m constipated to begin with. In order to keep things ‘regular’ I’m now eating a phenomenal amount of high fiber fruits and vegetables. I juice natural laxative foods, like beats, and drink tons of organic home juiced vegetable juice, and then… eat a lot of the pulp to make sure I get the fiber too. I have hardly any appetite, so it’s not hard to eat healthy, I rarely ‘crave’ anything. I’ve cut out wheat again, but it seems dairy isn’t constipating me, at least not the organic goat dairy I’ve been using… goat yogurt. I’m losing weight steadily, as I’m only eating between 1000-1500 calories a day most days, and I usually swim a few hours a week.

What I’m using instead of anti-inflammatory meds is ginger, lots of ginger, candied, fresh juiced, in tea…

This all seems familiar, have I blogged all this before? probably.. but my memory is craptacular along with everything else, and I don’t care if I say the same things over and over again. That’s what my blog is for, saying what I need to say, as much as I need to say it.

I’m tired

I’m sick

I’m frustrated

I’m scared

I hurt

I don’t trust my body

I’m trying to ‘control’ everything I can, strict diet, exercise…

but I feel like I have no control

That living in my body is like living in a foreign country.

Maybe a country that’s deep in civil war, my body attacking itself.

I just want some peace, and familiarity, and comfort, and warmth.

But, this is what I’ve got, and I’ve got no where else to live… so suck it up princess.

This entry was posted on Sunday, December 2nd, 2007 at 11:30 pm and is filed under General. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.