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Posts Tagged ‘nutrition’

since fibromyalgia is a complex disorder that requires a multi-disciplined approach in its treatment. there is no one correct, end-all, be-all approach for all people. in the beginning (before ’01) i had gained a lot of weight (i am typically pretty small) and my ability to exercise and manage much of anything had disappeared. not exactly the person you meet today. but from the beginning i had been advised by every doctor i saw to push through the fatigue and pain. it seemed overwhelming and i could not understand why they would ask me to do that. but i did a endless hours of research over the years and began to do what my docs and the research were telling me. i discovered focus on relaxation and exercise is many fold and is supported by all major research and medical foundations such as the arthritis foundation and mayo clinic. it seemed to me that people who were getting better  were the ones who’d found relief when they have adopted a routine including exercise, relaxation, healthy sleeping habit and other life management skills. this adaptation was not easy and i was faced with it before i had a diagnosis. i am not more motivated or have less pain than anyone else. i’m a fairly average person. so, i’ve felt hurt when people look at me and say “you’re just stronger” or “well your pain’s not that bad”. but not every day is good and fatigue drags me down to a halt during flairs.
the person you meet (on a good day) today, is not the person i had become years back. it took major attitude adjustments (2×4’s to the head, knees, legs, feet…) and learning…trying things and failing…to find some relief from the most disturbing aspects of this disorder. but first i had to become open minded and willing. the pain was in my body, but as i’ve seen with so many others in some horrible chronic situations…it’s all about the attitude! that’s no small thing. i fought everyone and didn’t think they knew what they were asking me to do! i was angry all the time. i couldn’t understand and i thought my doctors were quacks and incompetent. now, my song is changing as i’ve changed. they’ve become my partners in trying to make it through this maze. but i still get tired and the pain flairs…i still have days that i feel i can’t do anything. i have bad attitude days…and that can be expected. i have to remind myself that i didn’t make myself sick, but with help, i can get myself muchbetter. slowly i’m noticing progress. but it’s progress not perfection!
 
regarding exercise, i learned it must be geared towards the person with fibromyalgia. “regular” exercise classes are often too strenuous and fibro patients leave because they do not benefit from those. exercise done incorrectly (for a fibro patient) can, in fact, exacerbate the pain and fatigue. the gentle exercise outlined by the arthritis foundation and others will work, but it takes time and doing and must be done as regularly as possible. that coupled with correcting sleep disorders (the gentle exercise goes a long way to do that by reducing pain, raising serotonin, releasing endorphins and helping us to be tired at night…avoiding sleep during the day) because lack of sleep compounds and results in most of the symptoms fibro patients deal with, when healthy sleep patterns are restored most symptoms improve or disappear via that channel as well.
 
for me, my fibro seemed beyond debilitating…my life as i knew it stopped. for years things got worse until i couldn’t take it. it was either end this life or try this option…(yes i’ve become totally despondent and hoped for death rather than living like this). the medications never helped and any other passivetreatment i tried…didn’t help. from all research i had gathered, and on line support networks i had participated in, this is the one of the best medicines that seems to have been offered, not only to me but far too many others who i’ve communicated with or read their stories. it can sound disheartening to leave a doctor’s office with the advice being go and exercise and get better sleep (god i came to you for help and you tell me to go help myself?), but there is a reason for that. for one dr.s and research do not have a clear enough picture of what fibro is…and believe it or not…this is not the only disorder that the person with the job description of “doctor” has to deal with. with still foggy descriptions of what fibro might be and how it mightbe treated…they all do their best. the ground rules are somewhat clearer, but still, not exact or complete. rheumatologists are, at this time, the recognized specialists for fibro…at this time. that is where the major advancements are being made in treatment and diagnosis.
 
at this time there is no pill or treatment that has the long term, wide reaching benefits that countless research efforts have shown with the exercise, sleep and stress management protocols. combined, they do work if we let them. a doctor can’t do that for us…i believe that we are personally responsible for our care. i found that when i stopped being angry at the medical community and started helping myself…i improved. the reasons for that, again are multi-fold. that shift resulted in self-empowerment and knowledge which goes a long way to helping us feel better and regain a foothold in a life that has…slipped away. we regain a sense of self and self-esteem that we lost to criticism and doubt. when no one could seem to help us our self-esteem shattered as people questioned “why can’t you just pull it together and stop spending all of your time in dr.s’ offices?”…like that’s what you really wanted…but true…you were going to have to start paying rent at your dr.s’ appointments.
 
we never like to hear that “it’s all in our heads”. all chronically ill people fight that stigma at different stages of their process. but the most significant change for the better in our treatment does happen in our minds. when our outlook and attitude changes…our prognosis improves. this is true of any chronic illness or situation. fibromyalgia is not unique that way. and if you’ve read my blogg you know that i’ve dealt with a few chronic illnesses.
 
all though by no means is “exercise” the only protocol i’veused, as many disciplines are necessary to reboot a life that has been halted by fibromyalgia, hopefully the group (a new support group in town) can bring ways of implementing various protocols that are tailored to the person with fibromyalgia. while we hope for other medical progress to be made in bring relief for the major symptoms of pain and fatigue, etc, that may still be long in coming and this is the “best practice” at this time. chances are that this will always be a standard protocol as it is and has been for decades, for so many chronic disorders and well…just living well.
i will share that i take lyrica…i think it helps some but i’m not fond of the side effects. i’ve taken it regularly for several months and was on neurontin for years before it. i hope that some of the protocols i’m following might allow me to get off the lyrica too, but in time…one thing at a time.
some good fibro links:
national fibromyalgia research association: http://www.nfra.net/nfra-resource.htm
fibromyalgia network http://www.fmnetnews.com/
national fibromyalgia network: http://www.fmaware.org/site/PageServer
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well…i haven’t written or really been on line for the last few days. i’m a bit rushed this morning but, i guess when you get to feeling better for a bit, things get busy as you paddle to catch up. and there’s just the catching up inspite of not feeling great. the darn fibro alone simply wears on me, trying to make all my appointments and obligations. when i get home i can barely focus to read, let alone write.

i still maintain that getting off the benzos is a good thing…it’s means so much to be completely clean and then, “on top” of what is going into my body and how it’s affecting me.  while i want to rush and just dump this last .25 mgs, i will have to try to be patient…this weekend i’ll cut to about .13mgs, then i will be off the benzo/klonopin by the next weekend. there will be “aftershocks” even after the final dose…but i’m familiar with that route. being a recovering alcoholic who was addicted to pain meds for years as well, has offered me many “benefits” in this arena…my personal experience and mostly those of my peers!

i have several friends who’ve successfully detoxed off pmeds and are living good lives now. they inspire me.

i will be off all of my meds when i take that last klonopin in less than 2 weeks! that means no more: lamictal, wellbutrin, neurontin and klonopin as well as a mix of other prn meds.

geesh…the docs were all too willing to get me dosed up for over a decade…well two…but where did they go when i wanted help getting off an addicting benzodiazapine that was only being maintained…really…to avoid going through withdrawal. after the first couple of months the benzo was no longer providing the desired effect at 2-3mgs! i was hanging in some suspended place all of those years…the dose simply being like a “space holder”. attempts to go off did reveal symptoms…OF WITHDRAWAL! but the doc and all, had me convinced that those symptoms were from my “illness”, i needed to stay on the klonopin…and no one…NOT ONE professional ever suggested, strongly enough, that prolonged use of a benzo could be causing the chronic depression and fatigue i had succumbed to after a the first couple of years of adhering to my doctors orders with my meds! granted i was wresting with the fibro too…but all the more reason to get clean!

i know i may be moving fast compared to the schedule many others maintain. there are many who do agree with my approach and have done a similar program. but, i have no physician or practioner supporting and guiding what i’m doing (not by choice). the side effects roll in like the waves in the ocean…but there would be side effects if i went slow and i can’t see dealing with this discomfort for a year if i can bear with it all for about a total of no more than 12 weeks. yes that’s me sticking to a schedule even if it’s rough on my body. but staying on this drug is more damaging than getting off could ever be.

i take a lot of supportive measures with nutrition, meditation, exercise, laughter and friends. for me, i have to try to be on track by june to hopefully start back to classes

yes, our bodys do tend to follow their own schedule but…if i followed this darn body around i don’t know where i’d be! probably where i am, because that’s what i’ve been doing!

…so i rush…at this point no set of symptoms can trump what i deal with, having fibromyalgia, and thus set me back to changing my approach to my taper schedule. as i see it…if i back off my schedule…maintain or up the klonopin dsg to way-lay symptoms…i’m prolonging the inevitable. i’m already sick and draging, so what’s a little more if i can have this over with in as timely a maner as possible. i’ve lost so many years and time is precious.

 it’s been a rough and bumpy ride. the days are unpredictable packages of fog, fritz, fatigue and pain, punctuated with a clarity that motivates me to get clean. i’m so grateful to be able to detox…

many won’t have the chance to detox for a variety of reasons.

rough as detox is…it is a gift.

there is no pain-free, side effect free, way to withdraw from anything! i know this from experience…mine and other’s.

i have had many good hours but few completely good days. when i feel good i have a habit of “binging” on my available energy and lack of pain. of course the flip side is that i get wiped out, and feel the “hurt” of my fibro. i think the lyrica is being helpful, the most severe pain symptoms have abated, but i fight the fog and jittery feelings (which can be debilitating).

i don’t want to mess with the lyrica right now because the only thing i’m changing for now, is the decreasing doses of klonopin. a few weeks after the klonopin is gone i’ll work with my physician to tweek the lyrica and make decisions about managing my fibro. with the flood of symptoms i have from detox it’s hard to weed out which symptom is attributed to detox and which belongs to the fibro. oh, lest we forget this issue of bipolar… so one thing at a time.

my driving reason for wanting off all of my pmeds was the crazy overlap and layering of drugs that led me to where i just couldn’t tell what emotions and situations were me or my meds!

from now on the motto is to “keep it very simple and stay the course”.

and for now,

peace out!

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