I don't think my family will ever say anything to my face (they will definitely talk behind my back, they are just like that) and most of my friends were colleagues, as I was too exhausted/feeling like hell to keep up w/ anyone outside of work/home as this started to progress over the years and now I've been home so long, I don't really see anyone.
This is going to sound crazy, but my mothers way of thinking is "yes! this means disability for life" which translates to "you never have to work again" and is enough to make me want to beat my head against a brick wall because I worked my whole life until a couple of years ago (when I was starting to get a lot worse & a back injury put me out) and I wanted nothing more than to hear that there was going to be a simple fix and I'd get back to normal one day.
My husband is the one that keeps in touch w/ people casually (he's run off his feet now), so people are always asking, but we had no real answers until now. He asked me today if it was ok to disclose the details to his employers who are always asking if we've had any updates. I broke down and didn't want him to :/
I know what people will think. I have thought those things about my own mother. I fought long and hard to stay at work, to keep up w/ my family, to find the answers and I don't deserve to be swept aside like a lying, conniving, junkie who just wants to milk the system.
I know that's what people think of conditions that require pain management and while it may be true in some cases, this time it's not fair.
Perhaps my experiences have led me down a road that is different to that of others on this particular feeling, but having worked in community health and social services for many yrs, I know people are crap about chronic illness (doctors included). I have seen/heard/experienced a lot in the system. Fibro is one of the conditions that are scrutinized because a) a large number of ppl either fake symptoms to get a 'script or the dr's are so jaded that that's what they assume/believe. I've been to the hospital where I was accused of looking for narcotics, so my husband and I had to blast them and walk out without care because of others ignorance. My old doctor thought it would be fun to play a game on me and prescribed a placebo to test the validity of my claims. My employer of 15yrs built a case against me and created an unbearable work environment while I was suffering this illness & illegally fired me while I was off on disability. These were the same ppl that spent years discussing the social determinants of health and how all of those things had an impact on health & wellness, but felt no way about leaving me broke/broken w/ 2 disabled kids whilst off with a chronic illness, shortly after dropping all of our savings into a side business venture which is destined to fail now and on and on and on.
Worst part about all of the above mentioned? My experiences w/ my mother's chronic illnesses and my assumptions about her addictions to pain medications etc have meant that I had no interest in narcotics and my body is hypersensitive (shaking from the inside out, nausea, gut rot etc) to anything more than a tylenol, so I would really rather not if I don't have to. I don't really want to risk liver problems from taking fistfuls of pills and since, no one could put their finger on what was happening to me, I have declined the use based on those things and had no idea that my symptoms were related to FM. So I have been suffering through without any relief for years.
Do I think I will be able to go forward w/o meds? Probably not, but now that we know what we are dealing w/ we can talk about treatment. I need something. I can barely function
They have asked me to start taking Cymbalta (Duloxetine). I have read bits and pcs around the internet and can see that it doesn't always work. I have been taking Vitamin D for yrs because it continues to test low. We eat a fairly clean/veg diet, but things are harder now so we were slipping up and eating convenience foods because I am struggling to keep up w/ anything any more and we've started ordering a meal service to help get us back on track and lessen the load.
No idea what other people are doing for natural/alternatives for this particular illness. Care to shed some light? I have seen naturopaths and a functional medicine specialist in the past, so do take other supplements and am mindful of what goes into the shopping cart.
I am open to suggestions and grateful for the support.
Still wading through the mess...
