This subject is of great interest for me. My EM symptoms have progressively gone from annoying, to bad, to really bad and I honestly dread what is to come next.
I am an IT consultant and my business does as well as my health is doing. So if I have a good EM week (very rare anymore), then I am able to get out there and make money fine. If I have what has become a normal week (not good) then I struggle to do as much as I can to keep my clients happy but it's just not enough. Long story short, my business has shrunk the last several years because of EM preventing me from being able to help my clients. My clients have been exceptionally loyal, but how many times can they be expected to tolerate me having to cancel a meeting or leave early because i'm flaring up like a wicker man?
I tried the narcotic route that my doctors recommended and to put it bluntly, that SUCKED! I lost an entire summer of my life, i don't remember a thing about it. I have 5 kids and that just isn't cool. in total i spent 2 years taking morphine, norco, perco, etc... and sure, technically it helped with the pain.. but only because i was asleep most of the time. November of 2011 I decided that I was done with that little experiment and quit everything, spent 2 weeks curled up in the bathtub looking like a heroin addict getting clean. Talk about humbling/humiliating.
I now take aspirin and that's basically it, so there is no relief. I have two doctors at kaiser in roseville, ca and they are great supporters for me, they are willing to try anything we can come up with as a team to help and they contact me all the time checking in with me and talking about new research they stumbled across, etc. And I can honestly say that I love them, great people. BUT, i'm still in a lot of pain. I tried to explain it (for the millionth time) to my wife last night. It's like my hands, feet and face have acid poured on them, and that pain NEVER leaves, its with me when i wake up, its with me when i (try to) sleep. Then during a flare up, its like someone is taking needles made out of white hot lava and poking me all over my hands/feet/face and in a bad flare up arms, legs below the knee, side of the neck and a few spots on my shoulders. If that wasn't enough to drive a person to complete Poe-esque madness, the palms of my hands and the bottoms of my feet are extremely tender to any pressure at all. She is a great gal and understands as much as anyone who's never experienced it can possibly understand. So even tho I feel I have great doctors and I know I have a loving and amazing wife, at 2 am with half of ones body convinced its a 6 foot roman candle, it is impossible to not feel like I am in this alone. I'm so thrilled to have found this very active forum!
Work? Doing the things I WANT to do? What's THAT!? At this point in my journey down the lava road that is my life, my ability to work is so unpredictable and few and far between as to be nearly non-existent. i spend a vast majority of my day either in bed with my feet elevated or on a recliner with said traitorous feet elevated. Most of the time i have to also elevate my hands, typing is very painful, walking/standing is very painful, laying in bed is very painful, basically anything that involves me being awake is very painful.
To try to avoid the OMG WTF I'M GOING TO SCREAM kind of pain I use squirt bottles of water, never wear shoes, only sandles, take frequent cold bathes/showers, I absolutely have to have at least one fan blowing on me at all times, I also bought these things at costco called "cooling" towels, they work pretty decent to help keep me cool. That's about all i've learned so far and its far from enough. What i've noticed about myself is that even tho those things don't do nearly enough to aid in reducing the pain, they are actions that i can take to help me feel like i'm fighting this thing and that strengthens me a little bit emotionally. I also meditate, I pray (A LOT!!!), I am very lucky to be able to talk with my wife about anything i'm feeling and I know God is there.
Financially, I suck, my wife still makes good money so we get by, but we could be making much more and thus having more opportunities to do the things we'd like to do and more easily afford things that might prove helpful to me. I have no idea what to do this year and moving forward for work. Last year was horrendous, the year before as well. I'm virtually bringing home nothing and I am just not the type of person that would ever be ok with that, it weighs on me too hard that my wife has to bare the brunt of the financial needs of the family. I'm desperate for some advice on things that can implemented that work and are non-narcotic.
Thanks so much for reading this, I wasn't intending on writing a book here!! =]