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Introducing The Human Fibro Guinea Pig - Jane!

In the interest of science, I’m entering into the dangerous territory of human guinea pig - and it’s all for you, faithful Fibro Follies readers!

The Guinea Pig

What’s up: I’ve been inundated with hundreds of offers from various outlets - some spam, some not - offering the latest and greatest “fibro fix.” We all know that some of these offerings are just so much online quackery. (Clues: anything with “cure” in the title.) But some are actually built on sound principles - whether alternative or traditional or western-type medicine.

So how do you tell which is which? You can try them all yourself and hope for the best. Or you can let me do the dirty work, and write about what my experience with each product was like.

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Cure vs Control - What’s Possible With Fibromyalgia?

This post at a blog called “koo talks” bothers me, and I need to say something about it.

The author, attributed as Groshan Fabiola, writes:

Due to the fact that most medical treatments are unable to overcome fibromyalgia, the disorder is considered to be incurable. However, this belief is far from the truth. Although fibromyalgia is a serious disorder with a pronounced chronic character, there are actually effective means of treating it. Acupuncture has proved to be a very reliable form of therapy for fibromyalgia, providing symptomatic relief and preventing the recurrence of the disorder.

Then Fabiola goes on to discuss the particulars on acupuncture.

First point of contention: “incurable” and “effective means of treat[ment]” are not - repeat, NOT - opposites! These are two completely different concepts. I don’t know if this is a linguistic difference that results from a translation into English, or a confusion as to what the two concepts really mean. But here’s the fact: incurable means incapable of curing - of removing from the physical body completely. Treatment, on the other hand, means managing symptoms. The illness or syndrome of fibro doesn’t go away - it isn’t cured! - but it is managed.

The other difference? Cure isn’t here - yet! (though I believe wholeheartedly it will be one day) But there are many effective means of treating the symptoms.

The first step, I’d advocate, is to get to know those symptoms really, really well. And this is the hard part because - how do you do that, without treating them at the same time? And if you treat them, how do you “learn” the symptoms? They’d be masked by the treatment. If you can bear a week unmedicated, that will be best as far as figuring out where, when, and how much your symptoms flair up.

Another option is to treat one symptom at a time. Only when you have achieved a moderate level of wellbeing should you move on to holistic remedies. Remember, too, that sometimes what works for one symptom might be contraindicated for another. Do your research! Make sure you look up each and every potential treatment and its possible side effects and contraindications. Even herbal supplements can interfere with some medications.

As for acupuncture - well, I’ll share my thoughts on that in a separate post.

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A Medical School Advocating Herbal Supplements for Fibro? Yep!

No kidding. It surprised me, too!

But here it is, at the University of Maryland Medical Center website - a listing of the following herbs and supplements recommended for fibro management:

The links will take you to pages on UM’s site that give more information about each. I admit, I’ve tried a lot of supplements in my own treatment searches but I don’t think I’ve ever hit on one that had a measurable impact. Right now, though, I am using Magnesium along with 5-HTP in addition to my daily medication (tramadol). I’d love to find a supplement combination that would allow me to reduce or even eliminate the tramadol usage.

Have you tried supplements? What works for you?

Welcome to The Fibro Follies!

The Fibro Follies is a new blog and website designed to serve as a portal and a place to share stories for those living with the condition known as fibromyalgia. We hope it will be not only a place to get new information, catch up on the latest research, and learn coping tips and strategies for daily life, but also a gathering spot of sorts - a portal into the world of “fibro on the web.”

A Bit of Background

This site is privately owned and maintained by a writer and blogger who lives with fibro herself. Funding will eventually come from ad revenue and affiliate links placed on the site. But in order to keep the site up and running, we will depend on donations from readers who find value here - people, in short, like you. Servers cost money, and there are other expenses involved in this project as well. Eventually, we hope the traffic to this site will lead to ad revenues that are more than sufficient to cover the costs, and perhaps generate additional funds for our writer’s time.

But until that happens, we need donations. If you like what you read here, please consider making a donation to keep this site up and running. Details can be found in the sidebar and at the bottom of every post as well.

And from day one, until the day this blog shuts down (hopefully, that will only happen on the day they find the cure!), we pledge this: we will donate all net profits from whatever source - donation, ad revenue, affiliate programs, or other source - to fibromyalgia research. What that means is that anything over and above our expenses, including compensation for our blogger and fact finders (but excluding volunteers), will go to a research program or facility, which has yet to be identified. (If you have suggestions, please drop us a line at fibrofollies at gmail dot com.)

About Our Site

This site has several pages which can be accessed from the list at the top of the right-most sidebar. This page - the home page - is the blog. At “About,” you can read more about this site and our blogger, Jane. On the “Articles” page, you’ll find links to free articles written by our blogger/writer and others about fibromyalgia, including coping strategies, tips for relating to your medical professionals and to loved ones, and even help for your family members to better understand what you’re going through as a fibro patient. Finally, on the “Web Resources” page, you’ll find a more thorough listing of links to other web pages, including clinical sites, support groups, message boards, and other sites that might help you understand fibro and deal with it more easily.

You’ll also see, in that right-most sidebar, a list of links under various categories - Medical Information, Support Groups, and so on. This is our blogroll, divided up into various categories for your convenience. “Other Follies” is a list of other blogs that are about fibro in some respect. The other categories should be self-explanatory.

Finally, you’ll see a big, bright orange-and-white button underneath our header in the nearest sidebar, to the left of our list of Pages. This is the RSS button, and by clicking it, you’ll be able to subscribe to our feed in your RSS feed reader of choice. If that last sentence made you go “huh?!?” you might want to take a look at our “What The Heck Is RSS And Why Should I Care?” article, found here (it’s also linked to right underneath the RSS button).

Thrive, Not Survive

We want fibro to go away. Badly. But until it does, we hope you’ll find this site a helpful tool in your ongoing journey with this debilitating condition. We’re about thriving, not just surviving. We hope the content you find here helps you thrive.

Cymbalta Results In Fibro Patients Are Encouraging

UPDATE:  Looks like the traditional press are catching on - take a look at this article on CNNMoney.

At the recent 2007 Congress of the International MYOPAIN Society (a nonprofit organization of medical professionals dedicated to “the promotion of information about soft-tissue pain disorders like myofascial pain syndrome and fibromyalgia syndrome”), showed some promising results in a study that compared Cymbalta to placebo in fibro pain. Patients both with and without depression were included in the study, which (along with 4 others) prompted Cymbalta’s maker Eli Lilly to submit a supplemental application to the FDA for the use of Cymbalta in fibro treatments (click here for Eli Lilly’s press release on the subject).

Cymbalta is an antidepressant - specifically, it’s characterized as a “dual re-uptake inhibitor of serotonin and norepinephrine.” (See this page from Wikipedia for more information on the drug, generic name duloxetine.) This isn’t the first time Cymbalta’s been the subject of fibro treatment studies; this article from Medical News Today discusses a similar study from 2004 presented at an Annual Meeting of the American College of Rheumatology.

 

Articles on Fibromyalgia at Helium

Helium is a site that collects and publishes articles from writers all over the world, on every topic imaginable. As you can imagine, some of the quality of the articles can be questionable. But I’ve done the weeding out for you, and I can recommend the following articles on Helium as good resources for educating yourself or others about fibro - what it is, what it feels like, how it’s treated, and what the current state of research is.

Note: this isn’t meant to be an exhaustive list of the absolute “best” of all Helium articles on fibro - just four that I can ethically recommend to you of the ones that I’ve seen. They’re all collected under the general topic: Fibromyalgia: symptoms, treatment and associated conditions explained.

  1. I have pain all over. Advil and Tylenol don’t help very much …” so say the patients that come to author and doctor Erich Rosenberger, M.D..
  2. Linda Steinbiser’s daughter was diagnosed first, over ten years ago, which may have helped her daughter recognize the same symptoms in Linda. Here’s her article, complete with some good advice about dealing with the fallout fibro brings.
  3. Luelle Smith writes in this short article about her experience with conservative, non-pharmacological treatments for her fibro.
  4. This article was written by Judy Waller, who doesn’t have fibro but spastic cerebral palsy. However, a conversation with a friend with fibro led Judy to discover that the alternative treatments they were following had beneficial effect for both. Read about her regimen here.

A note of warning, however: remember that every body is different - literally. Your physical chemistry may not react well to some treatment regiment someone else swears by. Some so-called natural remedies can even do more harm than good. If you have a question about a treatment you’d like to try, do your research (on trusted sites only, please) and consider bringing it up to your doctor, if you have a good medical professional on your team who takes alternative treatments seriously and is willing to be open minded about new regimens.

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What Hearing the “F” Word Means to the Newly Diagnosed Fibro Patient

For those of you who’ve just been diagnosed with fibromyalgia (fibro for short), the world might look a little different to you right now. And you may well feel that a stranger has suddenly taken over your body, thanks to the sometimes off-the-wall reactions some of us have to finally hearing the diagnosis.

I’ve identified in my own research and in my conversations with other fibro patients roughly four “types” or “characters” that emerge unbidden from us when we finally get that “F” word from our doctor. Bear in mind this is in no way a scientific study, but a totally random creation of my own imaginative mind based purely on anecdotal evidence alone. You know - very trustworthy stuff.

You can never really tell which one of these characters will emerge when you get the “good news” from Dr. No, by the way. I’ve seen stoic, stodgy bankers burst out laughing, and the most airy artistic types turn into a Commander that would make Patton proud.

The Crier

The Crier does just that - she cries. She might cry a little or a lot; the tears may be stifled initially but let loose outside the doctor’s office on the way home, or maybe they’ll flow that night. Whatever the circumstance and whenever they may come, the tears will come, when the first reaction is an overwhelming sense of sadness. This type has a perspective of loss - she sees immediately what she’s lost or is losing or will lose: time with children, grandchildren; favorite physical activities; romantic relationships with people who aren’t capable of dealing with her illness; and worst of all, her dreams for her life that now (she feels) are completely trashed - gone up in little puffs of ethereal smoke. Marked by a growing agitation in her physical body that feels much like anxiety prior to the announcement of the diagnosis, The Crier will erupt and usually run its course in a day or two.

However, you should be wary if The Crier hangs out for more than that. Here’s the thing about The Crier: even while you’re letting The Crier have center stage, doing her dramatic, weepy thing, you know deep down that while she’s entitled to mourn the passing of a past perception of what your life was all about, any sense of doom is just nuts. You haven’t lost anything yet except your ignorance - now, you know what’s going on with you. You have gained some knowledge.

And that’s the real trick to dealing with her. You need to start gently encouraging the Crier inside to look at what remains, and even what you’ve gained (certainty, a plan…).

The Laugher

Believe it or not, some folks feel a deep sense of - if not glee, then deep-seated relief. These are The Laughers. They’re relieved to know that, at long last, there’s a name for the hell they’ve been going through. And they see a bit of humor in the whole thing, truth be told. I mean - an invisible illness, everyone thinks you look well, but you feel like you’ve been run over by a Mack truck? That’s honestly kind of funny if you think about it! Plus, there’s the overwhelming sense of relief that it isn’t something more serious - something fatal, perhaps? Or degenerative?

The Laugher should feel free to see the humor in her situation all she likes but might want to keep in the back of her mind a thought that if there does come a day or time that it doesn’t seem so funny after all, that it’s completely permissible to feel like not laughing - it’s even OK to get angry, or sad.

The Homer

No, not the Simpsons character. This “Homer” takes to the nest - her home - and doesn’t come out for a very long time. Home, with its sense of familiarity and safety, feels very good to the Homer who suddenly feels her entire world has come unglued and gravity is no longer working for her. To cope through the next few days, the Homer should take it very easy on herself - allow herself the luxury of nesting for a bit. But through it all, she should also attempt to maintain a sense of “what remains.” At some point, she’ll have to look at changes to be made, both psychologically and physically, but right now in the immediate aftermath, merely reminding herself that some things haven’t changed is good medicine.

This kind of response is pretty much just what the Homer needs, and she shouldn’t allow herself to feel pressured out in the world sooner than she’s ready. However, keep an eye on yourself - if a short nesting period turns into a habitual agoraphobia, you’ll want to get some help, pronto.

The Commander

Far and away the most impressive, outwardly, is the Commander. She takes it all in with the air of a general receiving briefings from advance scouts, and within short order has accumulated even further information, consolidated and processed it, refined it into a well-honed military strategy. Commander’s got plans to lay siege to fibro and eradicate its presence altogether. She reads all the latest research study descriptions, keeps up on all the latest literature, and she’s got a plan for treatment in place for the next six months or beyond.

That’s all well and good, Commander, but bear in mind - this is still an incurable disease. There will come a point that you can’t control, and that’s OK; be ready for it and know that you’ll need a different approach when that time comes.

Who’s Who?

You can’t really predict which one of these four types (or any of their supporting players) might make an appearance - that’s the fun of it, you could say. But I do believe this: whatever does come up for you unbidden - whichever of these characters makes her debut in your life post-diagnosis - she has something to say, and you’d do well to let her have her time on the stage. (Just don’t forget that you’re the director.)

Coming Soon - The Fibro Follies

Check back soon for our grand launch!