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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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april 25, 2008…hopefully that will be the day i can say was the first day i went with out taking a benzodiazapine, klonopin. it would be tempting to say that today ends an 11+ year addiction and a several month struggle to safely  off the drug. no, today is really the beginning of this new chapter in my life. years of therapy, involvement in AA and a relatively brief withdrawal period have offered me many opportunities to develop life skills and tools for dealing with life.

the biggest problem i’m perceiving right now is sleep. the last couple of weeks have been filled with poor sleep patterns. poor sleep is also a part of the territory that comes with fibromyalgia (d/x, 2001)…so it’s a bit of a double whammy here. healthy sleep is not really negotiable (not even in a healthy person). getting a good night’s sleep can be a larger determining factor in how the next day will go, over about any other factors there may be! if something isn’t going well, it’s usually attributed to not sleeping. like this morning…my thinking is still cloudy, i’m just wiped out and the pain is “annoying”. yes, i’m taking 300mg of lyrica and the first two symptoms i mentioned can be side effects of that drug…but i’ve been taking lyrica for several weeks now, and those other issues always become more intense when i’m going through bouts of poor sleep.

as we all know well, by now, healthy sleep is kind of the human version of “rebooting”.  sleep supports our immune system, rebuilds and repairs our body, it helps with fatigue, pain, depression to name a few. even irritable bowel can improve when sleep is regulated (but flairs when sleep is poor).

an aside/rant: many of us prefer not to take drugs/meds to manage symptoms. i’m joined with that school of thought. i want to discover the root cause of my problems and find a way to improve my overall health. yes, modern medicine is obsessed (and rakes in the cash) with chasing symptoms. honestly, every med that i’ve been prescribed was given to simply manage a symptom but never was there any meaningful help in addressing the cause of my problems. ok, by my own admission, i’m a little nutty…i have had mental health issues…but my life is not simply composed of symptoms…my disorders are real. i have real disorders with real diagnosis. i hate being manged differently than non-mental health patients. but that’s a discrimination that is older than time, and honestly…i have problems with the same discrimination issues raising in my own mind when dealing with another mentally ill person. so, i understand where docs and others are coming from. but fact remains that efforts to get off addicting medicines and deal with disorders like fibromyalgia can require good medical support if a patient hopes to be successful in navigating.for the most part, many of us have waded through these waters with our own research and the support of our peers who are doing the same. in this information age, that’s not so bad. taking action to manage our own health care can help empower us and put us in the driver seat. that boost in self-esteem is a tremendous aid in dealing with any disorder.

now, achieving good sleep hygiene…there are sleep specialists everywhere, so many good articles and so much research done in this area, that it’s almost amazing that we, americans, have such tremendous struggles with this 1/3 of our daily cycle. but then you look at our whacked out lifestyles and it’s no surprise. we are a society geared toward promoting and supporting frantic, ADHD-like living! how can we possibly prioritize doing “nothing” for 8 hours!

you gotta look at your other 16 hours and evaluate them. how are you feeling, are you effective…the entire list. if those 16 hours, that you’ve now turned into 20, are not the greatest, then…you can probably optimize your original 16 into being more functional and productive than the 20 if, you give those silly 8 hours of, doing nothing but sleeping, a high priority. those 8 hours of sleep will do more to determine how the next 16 will go, than any efforts expended during those 16 hours, or almost any drug, relationship, meal…you name it. no, life can’t be all about sleeping…but it really is.  i believe we can only go apx. 5 days with out any sleep (more or less). we will become psychotic, our systems will shut down. i’ve read rats only live 2-3 weeks with out sleep…whatever the exact measures…fact is we can’t live without sleep.

personally i try to break my life down in to three 8 hour portions. my 8 hours of sleep must be done in the same slot…together. but my 8 hours that should be work and 8 hours of general living: transportation, chores, eating, socializing, personal care…they can often be shuffled a bit. but i find breaking things down this way, budgeting and scheduling, actually gives me more time. i find time i didn’t know i had.

so in using tactics like that, i find that i can safely set aside 8 hours to manage my sleep. it is do-able and essential. i have to think…i would not just not show upfor work or class, or decide to work only 3 hours out of an 8 hour day…i make meetings a “must do” priority…why can’t i do that with sleep? well…now…at 45, after being clobbered with illness, i would never try to cheat on the time i give to sleeping. i try very hard to avoid naps and try to keep to a regular schedule.  here is a  page on webmd that has a variety of articles about sleep: http://www.webmd.com/sleep-disorders/default.htm i needn’t go into extensive lists here.

i’m sure most of you have been down this research road many times, as sleep disorders effect all of us. when you have to deal with meds and chronic disorders…this issue becomes a fact of life…and dealing with it is nearly a life or death issue. i probably needn’t remind many of you, but i need to remind myself. i’m falling back into a horrible sleep tangle again and meds are not an option…i gotta do it through lifestyle.

so, tonight, i’m going to bed without any klonopin, and upping my melatonin. enjoy your precious 8 hours.

peace out

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