Feeds:
Posts
Comments

Archive for April, 2008

if you have fibromyalgia you have wrestled with your mental acuity and cognitive functions but probably have been told that “what you’re going through is just normal” or maybe “you’re hypersensitive” and you feel like you’re going crazy!  well this research piece from the national fibromyalgia association may help you feel validated…people with FMS do experience loss of cognitive function…

Cognitive Function & Fibromyalgia

by Jennifer Glass, Ph.D. and Denise Park, Ph.D., The University of Michigan

“I can deal with the pain, but the memory and thinking problems really worry me.”  “The physical symptoms weren’t as frightening as the memory problems.”  “The most devastating effect for me has been the cognitive impairment.”

If you have fibromyalgia (FM), then these quotes may describe what you have felt as well. Many FM patients complain of cognitive (or mental) symptoms such as memory failures (both long-term and short-term), difficulties with attention, and with finding the right words. Our research focuses on these cognitive problems in FM patients.

Our research shows that there really is cognitive dysfunction in FM patients.  read the article: http://www.fmaware.org/site/News2?page=NewsArticle&id=5280

ABOUT NFA: About NFA I NFA History I Contact Us I Executive Board of Directors I Medical Advisory Board I Staff I Donate to the NFA
FIBROMYALGIA: Fibromyalgia I What is Fibromyalgia? I Who is Affected? I What are the Symptoms? I How is Fibromyalgia Diagnosed? I What Causes Fibromyalgia? I Science of Fibromyalgia I How is Fibromyalgia Treated? I What is the Prognosis? I An Overview for the Newly Diagnosed Patient I Clinical Trials I Public Service Announcement
FM COMMUNITY: FM Community I Support Group Information I FM Community Events I Leaders Against Pain I Advocacy I Awareness Day I Membership I Member Spotlight I Patient Stories
RESOURCES: Resources I Resource Directory I Glossary of Terms and Definitions I Sponsors I Featured Advertisers I AWARE Magazine I FM Online Newsletter I Clinical Trials I eCards
TOPICS A-Z: Topics A-Z I Español
STORE: Store I Jewelry I Educational I Goodies I Awareness I Apparel
HEALTH PROVIDERS: Health Providers I Research Abstracts I Continuing Medical Education
MEDIA: Media I Fact Sheets I Press Releases
RESEARCH: Research I Abstracts I Listing of Current Clinical Trials I Glossary of Terms and Definitions I Research Overview

Read Full Post »

my counselor and i began discussing polarity therapy…energy work. i wanted to read more about what exactly it was. i’m very familiar with a variety of yoga, meditation and have had reiki, massage and acupuncture work done…but i wanted to know more about polarity therapy because this is just another area that  can use improvement when one is trying to work towards a healthy lifestyle. so here’s a good, straight forward article, from the american polarity therapy association, on what polarity work is: http://www.polaritytherapy.org/page.asp?PageID=24

an interesting book that my counselor gave me by caroline myss, phd, called “why people don’t heal and how they can” (also wrote “anatomy of the spirit”) deals with incorporating energy work into a holistic mind, body, spirit approach to healing. now i know the title might put you off, but i’ve been following other works that deal with “road blocks” in healing and this is a positive and good read if you’re experiencing “being stuck”.

http://www.amazon.com/exec/obidos/ASIN/0609802240/interactiveda936-20

i’ve been at this “wellness” gig for over 20 years. i began searching out many spiritual and nutrition based approaches as a teenager. initially i was concerned with the usual teenage issues like acne and weight but what i discovered, worked, so i stuck with it. as i was digging around that community, which was very small back then, i met a lot of people and was turned on to a variety of readings and experiences. i was learning about ways to heal some deep inner pains that i was already wrestling with, and having some horrible consequences from very bad, maladaptive behaviour and personality issues. i became a devout buddhhist in my early twenties and the search continued. but i am convinced from the many positive experiences that i’ve had, that this whole arena of mind, body, spirit healing is key for living well.

i still struggle with a lot. i’m not whining, but life just can never be normal for me. i keep stumbling across huge hurdles and crashing into brick walls. by now my problems must largely be due to brain damage from all of my collisions with life! but MRIs and other say that, anatomically, i seem “normal”. my gastro. dr came into the room a few days back, sat down and looked at me squarely and said “your tests are normal but…you are not!” and we laughed.

so, after over 11 years on a battery of psych meds for bipolar and spotty treatments for fibromyalgia, i felt i was not longer benefiting from the pharmaceuticals and was going broke in the pursuit of maintaining that. i guess i’m finding out that no matter which direction you go in…if you live out here…it’s not going to cheap and access to help is going to be limited. moving is not an option for me. so i have to work with what i   can  learn to do.

just what can i do from learning? i can maintain a healthy diet and exercise (walking, yoga, physical therapy). i can work on my spirituality (reading, AA, community). i have limited access to a counselor but she’s great and that’s what counts. books and videos are helpful. i have a good thing with my AA community and they do what they can (moral support and other help). there’s the phone, which can be my lifeline on days that i’m not doing well. the internet provides many opportunities to learn of up to date information on nutrition, techniques and therapies. while attending classes and having practitioners would be optimal…you do what you can. at best, things can get frustrating…very.  but when the rewards appear and even if they’re small, it’s great. you learn to appreciate the small things because healing from life long spiritual wounds and chronic issues is a slow process. i may rush with some things but i can’t afford to be down for long or maintain costly therapies that i have no funds for. but much of my process is about patience…the patient practices can be a long and lonely journeys some days and it’s easy to get despondent when you are just plain hurting and down. i’m not a monk…i’m just human…a sick human trying to heal.

while i’m off all of my “psych” meds i am still taking lyrica. i don’t think i’m fond of the lyrica? i take melatonin and it does help me  sleep very well and i wake up feeling good. i ran out of guaifenesin a couple days ago and found out just how much that was helping my fibromyalgia. i ran into the 4 corner town a few miles down the road to see if they just had something containing guaifenesin…i didn’t think they’d have what i take, but i found it…after half an hour i was feeling much more on track. gaufinesen an oddball therapy for fibro but it was in the book my dr. gave me and i thought i could try it…it seems to really help. (Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition) by Devin J. Starlanyl and Mary Ellen Copeland)  also a good article on guaifenesin therapy: http://www.fibromyalgiatreatment.com/Articles_HYSTERIA.htm for now, i’ll take any help, because simply being able to do anything but lay on the sofa is an improvement and i need to be able to be up, moving around and communicating. i’ve got a lot of writing to do and i’m just trying to avoid it right now!

Read Full Post »

well, i do have a bit of a bee in my bonnet. it’s about the accelerated taper schedule i needed to follow. i don’t harp about my life’s circumstances…the one thing that can drag me down faster than my illness, because it won’t help things and it’s not the topic i’m working with. but i’m sensing some bristling of hair regarding faster tapers. i fairly, thouroughly understand the multifasceted need for doing a slow, supervised taper. many people make sacrifices in order to manage their health. but when you have nothing  left to sacrifice…well, i think there is a great lack of empathy for the circumstances of some people needing to get off meds. this may be a hard concept to wrap your head around, but protracted withdrawal is a luxury  people take for granted. i’m sure you can throw a list of how you have been able to do lengthy tapers with limited resources…but do you live in rural appalachia? my county (s.e. ohio, west virginia) and the neighboring ones, make national news for joblessness, hunger and poverty all the time. my mother sends me the articles from the chicago tribune! we do have an extraordinary situation here. being poor in or near a large city is very different than being poor and living hours from a major city and living in a region not known for being “progressive”…we are not a hot spot or major destination for research and development. yes we have pockets of that if you’re looking at obesity, diabetes, COPD, etc…poverty isa major contributor to those things. it is easy to condemn what you don’t know…believe me, there are a lot of unknowns. being poor and new on the learning scale does not make one the enemy…we just need accommodations…so many of us give up the good fight because of the stigma. but if you’re diagnosed mentally ill and you’re dealing with income issues maybe you can begin to have some insight into what “stigma” means?

i avoid this topic because going there…i can find myself feeling irritated….i’ve been butting up against it for too many years now. (i’m fortunate it hasn’t been my whole life. it may be harder because, for most of my life i was reasonably successful and i have a hard time understanding why i can’t pull myself up. but i’m understanding how people can “get stuck”. i just don’t want to stay stuck. i believe i can get out of this. but judgement and stigma can put more weight on you than almost anything…if you let it. i won’t so that’s why i’m writing instead of feeling hurt, defeated and just walking off. i don’t have a lot of love and support around me…except for AA where i let people in. i have no available, supporting, family or a spouse. my love and support has to come from with in and from god.

in an area where just day to day survival is a massive struggle…mental illness and surrounding issues are a luxury. that may be hard to swallow…but if one can’t understand that, then you are probably blissfully ignorant or naive! (check out mental illness in developing nations! my friend just came back from a 2 month visit with her family in kenya, after being in the US for over a decade. she was given diagnosis here but…that’s still another issue worthy of inspection so you don’t take for granted what you have here.) i am back in survival mode. i am not considered quite “poverty” and don’t have medicaid. i have medicare, but don’t have enough of an income to afford uninsured care (and most insured care). i can’t work right now, and often can barely manage a shower and making it to an AA meeting. thank god for AA because it’s free, but i have to be able to make the 25-30 minute drive to and from! but i don’t have a husband, family or really friends that support and understand withdrawal and fibromyalgia  issues. my friends and community are good people but this is not their gig. this is a rough spot to be in! i would have never understood it myself, if i hadn’t found myself in this position. living here over 11 years and i was ignorant and naive to this. being caught in the middle of the socioeconomic stratas is just that, caught. i’m not using the words ignorant or naive to be cruel or condescending…they are by definition, the appropriate words.

at least i can find some information that is helpful, but i have to be able to do it or it’s just “information”. i always thought that where there is a will there is a way.  but “way” requires money and access. and hey no money no access! even supplements are ungodly expensive. in the past i could afford them. so necessity is driving my schedule and my life now. some of us are…no all of us are doing our own personal best. and we all have our own personal necessities…i like to call it personal velocity.

this is largely uncharted area that we are going into. little is still really known, and much research is showing up about both withdrawal and fibromyalgia. we know more now, but we are still learning! each of us are pioneers in trying to deal with these health issues. i think we have to be supportive to everyone’s approach. there are many strong feelings and there will be in these fronts. but if we let our emotions and opinions divide us (even a very informed opinion is still…an opinion)  rather than showing support for the entire community we will greatly weaken our efforts to move forward. i have been fortunate to have been in AA for over 10 years. i have a lot of experience with diverse populations finding many paths to a common goal. it is the common goal that holds us alcoholics together, not our means. yes, we all practice the 12 steps, but even each take on the 12 steps can vary. if we scrawbled about the details, the AA support circle would shatter.

the common goal we in the “off meds” community share, is living drug free (or with minimal medication). we will get there if we maintain that focus. everyone has something valuable to contribute…for now we really only have each other. with love and room for growth…more people will join the ranks of being able to actively contribute and support others.

contempt prior to investigation…not cool. don’t pass uninformed judgement on the choices others have to make in their healthcare. we are not equally provided for or have equal access in that arena…not even in, god-bless-america. not even with information. we can not demand it becuase we have to do for ourselves…that recquires creativity and weighing options…assuming you’re fortunate enough to have them. PEOPLE DO NOT HAVE EQUAL ACCESS TO HEALTHCARE IN AMERICA…please understand this becuase it’s real and its now and it hurts.

big pharma would love to devide and concour us, but why bother if we do that to ourselves.

Read Full Post »

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

Read Full Post »

visit this site: http://www.genome.gov/24519851 to find the history of this act, including:

Legislative Chronology
Testimony
News
White House Support

Genetic Information Nondiscrimination Act: 2008

NHGRI Director Francis Collins testifies at a March 14th, 2007 House Ways and Means hearing. NewUpdate: On March 5, 2008, the U.S. House of Representatives passed the Genetic Nondiscrimination Act (GINA) as part of the Paul Wellstone Mental Health and Addiction Equity Act of 2007, introduced by Rep. Patrick Kennedy (D – RI), which would require health insurance companies to offer benefits for mental health and substance-related disorders under group health plans, by a vote of 264 – 148.

Representative Louise Slaughter (D-NY) attached GINA to the Kennedy bill. Congresswoman Slaughter said that because “most mental health diseases are genetically linked, GINA is a natural addition.”

GINA has yet to be voted on in the Senate.

The progress of GINA’s passage through the legislative process can be tracked on this pag: http://www.genome.gov/24519851

Read Full Post »

this is an article from the “modern healthcare” site:

Congress appears to be nearing agreement on a bill that would prohibit health insurers from denying coverage to otherwise healthy individuals who have a genetic predisposition to develop a disease. A Senate vote on the Genetic Information Nondiscrimination Act could be held Thursday, congressional sources said.

The bill would also bar employers from using genetic information for hiring, firing, job placement or promotion decisions.

Sponsor Rep. Louise Slaughter (D-N.Y.) has been trying to get the bill through Congress for 13 years, although those attempts have been thwarted in both the House and Senate through various actions by Republican lawmakers.

“By prohibiting the improper use of genetic information, (the bill) encourages individuals to seek early treatment for genetic-based diseases and participate in the studies needed for the future medical breakthroughs of the 21st century,” Slaughter has said in written statements.

The House by a wide margin finally approved the bill last year. In a more recent action, provisions of it were also included in a mental health parity bill that cleared the House in March.

Changes were made to the Senate version, however, to address the concerns of Sen. Tom Coburn (R-Okla.), who has been exercising his authority as a senator to block the bill’s consideration. Coburn’s argument has been that the bill may pose unintended liability risks for insurers and employers.

Congressional sources said that Coburn’s concerns have been met under the amended version of the bill. — by Jennifer Lubell

What do you think? Post a comment on this article and share your opinion with other readers. Submit your comments to Modern Healthcare Online at mheditorial@crain.com. Please be sure to include your hometown and state, along with your organization and title.

Read Full Post »

from “fiercehealth”: like so many others, i have concerns about all of the genetic testing that seems to be swirling around us. i thoroughly understand what benefits there are from understanding our genetic coding and how that can help in developing new treatments. no doubt it’s an important research and treatment tool. however, with the “information age” becomming what it is, there must be concerns of how much information should be available, and to whom? where will the lines be drawn or moved? yes, bills like this, promising to protect our information, could help with genetic research (as many are fearful to be involved because of concerns about where their genetic information might go). well, this bill seems interesting but is a part of a much larger picture and continuation of a saga that…has far to go. because of all the implications this has with big insurers, big pharma…all the “bigs”…who can always know what move on the “chess board”, in the game of “big” vs the people, this is, but…there is always one detail, a loophole, or something i tend to miss…so if something is not kosher about this…let me know!

2. Genetic discrimination bill progressing in Congress
Comment | Forward to a friend

After more than a decade of attempts, it looks like Congress might finally pass a bill that would block health insurers from denying coverage to otherwise healthy persons based on their genetic predisposition to come down with a particular disease. The bill, the Genetic Information Nondiscrimination Act, also would bar employers from using genetic info as part of hiring, firing, job placement or promotions. The House approved the bill last year, and the Senate is expected to vote on it this week. The Senate version, however, attempts to make the bill easier on insurers. The changes are a concession to Sen. Tom Coburn (R-OK), who has blocked the bill, arguing that it could impose unintended liability risks.

If this bill passes, it could have important implications for the future of personalized medicine. Right now, some researchers studying gene-specific effects of treatments are finding that some subjects won’t participate due to fears that their data will be used in just the fashion proscribed by this legislation.

To learn more about the bill:
– read this Modern Healthcare piece (reg. req.)

Related Articles:
Genetic discrimination ban gains support
Fearing insurer backlash, patients avoid genetic tests

Genetic testing advances as insurers balk


Read Full Post »

Older Posts »