The Syndrome Syndrome

My good­ness. I think some­body over at Home on the Strange might have encoun­tered one of those peo­ple who makes life so hard for those of us who really have invis­i­ble dis­abil­i­ties! Go on over and read the comic. I don’t want to spoil the surprise!

April 4, 2007   Posted in: Attitude, Chronic Fatigue Syndrome, Education, Fibromyalgia  4 Comments

7,000 deaths a year due to bad handwriting? Save yours!

Well, Time Mag­a­zine reports that the National Acad­e­mies of Science’s Insti­tute of Med­i­cine says that’s the fig­ure, any­way.

Doc­tors’ sloppy hand­writ­ing kills more than 7,000 peo­ple annu­ally. It’s a shock­ing sta­tis­tic, and, accord­ing to a July 2006 report from the National Acad­e­mies of Science’s Insti­tute of Med­i­cine (IOM), pre­ventable med­ica­tion mis­takes also injure more than 1.5 mil­lion Amer­i­cans annu­ally. Many such errors result from unclear abbre­vi­a­tions and dosage indi­ca­tions and illeg­i­ble writ­ing on some of the 3.2 bil­lion pre­scrip­tions writ­ten in the U.S. every year.

The cure, accord­ing to the sources cited in the arti­cle, is auto­mated pre­scrib­ing. Physi­cians would use a web-enabled phone to select med­ica­tions and dosages from menus, so names and num­bers wouldn’t be mis­writ­ten or mis­heard (mis-selected is always pos­si­ble, but you can’t removed all pos­si­bil­ity of error). Most of the money for the sys­tems will come from health insur­ers, so I don’t know how all this will work for peo­ple who pay for their own prescriptions.

The whole arti­cle left me with many ques­tions, in fact, about choice, and prod­uct posi­tion­ing — will doc­tors even be able to pre­scribe med­ica­tions that aren’t in the “for­mu­lary” when they know that some­thing else will work bet­ter? Will they be able to select some­thing out­side the stan­dard range of doses? What about com­pounded prescriptions?

This lit­tle sta­tis­tic sur­prised me, but there’s no source cited, so I’m not sure I trust it.

Sure­Scripts CEO Kevin Hutchin­son says one key to reduc­ing med­ica­tion errors is to get the most pro­lific pre­scribers to tran­si­tion to elec­tronic pro­cess­ing. “Not a lot of peo­ple under­stand that 15% of physi­cians in the U.S. write 50% of the pre­scrip­tion vol­ume,” Hutchin­son says. “And 30% of them write 80%. So it’s not about get­ting 100% of physi­cians to e-prescribe. It’s about get­ting those key 30% who pre­scribe the most. Then you’ve auto­mated the process.”

Unfor­tu­nately, Time doesn’t bother to give any sug­ges­tions as to how to save lives until this utopian sys­tem to con­trol those wild and wooly scrib­blers is in place. I guess I’ll have to give it a go.

Please remem­ber that when I say “you,” I mean you or your advocate.

First, be sure that you always know what your doc­tor is pre­scrib­ing for you, and why. Take notes. Write down both the name and the dosage of every med­ica­tion, and what it’s for. If you’re unclear on the spelling, as the doc­tor or his staff to spell it out or write it down for you.

If your doc­tor is giv­ing you refills on your nor­mal med­ica­tions, look at the refill pre­scrip­tions. Do they seem to say what you expect them to say? If not, ask about them. Be sure. He might have mis­re­mem­bered or writ­ten down the wrong thing. Doc­tors are not infal­li­ble. It has hap­pened to me! If you’ve already left the office, con­tact his staff. It’s bet­ter to be safe than sorry!

Com­pare your notes to the pre­scrip­tion bot­tle before you leave the phar­macy. If the pre­scrip­tion has been filled with a generic and your doc­tor gave you a brand name, dou­ble check with the phar­ma­cist (not just a clerk) to be sure that they really are the same med­ica­tion. If your doc­tor said you were to take the med­ica­tion twice a day and you’ve only got 30 pills to last 60 days, don’t leave the pharmacy.

Read the infor­ma­tion included with your pre­scrip­tion. Make sure that it agrees with what­ever the doc­tor told you, or makes sense con­sid­er­ing why the doc­tor pre­scribed this med­ica­tion for you. If you don’t under­stand, again, call the doctor’s office, or at least the phar­macy. “I have fibromyal­gia, and my doc­tor pre­scribed this med­ica­tion, but the insert just talks about depres­sion. Why?” It’s a per­fectly valid ques­tion. If the doc­tor already explained that to your sat­is­fac­tion, of course, you needn’t call—but do call if any­thing doesn’t make sense.

Tak­ing these pre­cau­tions should pro­tect you, whether your doc­tor scrib­bles, has beau­ti­ful pen­man­ship, or uses an auto­mated system.

January 19, 2007   Posted in: From the news  11 Comments

Will there be a cure?

I responded to a post in a friend’s Live­Jour­nal, in which she talked about a friend of hers who has just been diag­nosed with chronic fatigue syn­drome. Her friend was very upset that my friend didn’t believe there is a cure for fibromyal­gia or CFS (at least, there isn’t one right now). This is part of my response.

I think that the fact that there’s finally acknowl­edg­ment from the CDC and the like that CFS is real, and research prov­ing that FMS is real and show­ing a genetic link, is very promis­ing. That greatly increas­ing the prob­a­bil­ity of research being done that might find a cure, or at least decent treatments.

But no, I don’t really look for a “cure” for either dis­ease. I think the best we’re going to see for some time is bet­ter treat­ments for the symp­toms. I’m fairly cer­tain that both dis­eases will be found to be genetic weak­nesses trig­gered by envi­ron­men­tal con­di­tions that dam­age the ner­vous and/or immune sys­tems. Gene ther­apy may be able to repair some of that dam­age. Maybe. Germline ther­apy might offer our descen­dants the pos­si­bil­ity of not pass­ing the genetic weak­nesses on to their children.

But - not expect­ing a cure doesn’t mean that I don’t pay atten­tion to the research and the lat­est infor­ma­tion avail­able about treatments.

I think hop­ing for a cure, in some ways, can be a way of try­ing to shift respon­si­bil­ity for how we pro­ceed to the med­ical estab­lish­ment. If there isn’t one com­ing, the only improve­ment we’re going to expe­ri­ence is what we man­age with what’s avail­able now. The improve­ments we make in how we eat, move, sleep, inter­act, etc. are up to us, and they can make a huge dif­fer­ence. We can get some relief from cur­rently avail­able med­ica­tions by work­ing with our doc­tors. We can use var­i­ous tech­niques to improve our cog­ni­tive func­tion­ing or prop our­selves up despite fibro fog. And if we aren’t sit­ting around wait­ing for some­body else to hand us a cure, we’re more likely to do those things.

December 11, 2006   Posted in: Chronic Fatigue Syndrome, Fibromyalgia  14 Comments

Quote of the day: Laughter

“We are able to laugh when we achieve detach­ment, if only for a moment.“
–May Sar­ton

I do at least a dozen silly things every day, thanks in part to fibro fog. The sooner I let go of my anger and frus­tra­tion and laugh at myself, the sooner my stress lev­els go back down, allow­ing me to think more clearly again.

December 5, 2006   Posted in: Quotations, Relaxation  5 Comments

Researchers say pain from fibromyalgia is real

Not that it’s news to those of us who have it, but it’s good to be validated!

Fibromyal­gia often has been mis­di­ag­nosed as arthri­tis or even a psy­cho­log­i­cal issue. Increas­ingly, though, the sci­en­tific knowl­edge about fibromyal­gia is grow­ing, and a new paper from the Uni­ver­sity of Michi­gan Health Sys­tem says there are “over­whelm­ing data” that the con­di­tion is real, is char­ac­ter­ized by a lower pain thresh­old and is asso­ci­ated with genetic fac­tors that can make some peo­ple more likely to develop fibromyalgia. …

“It is time for us to move past the rhetoric about whether these con­di­tions are real, and take these patients seri­ously as we endeavor to learn more about the causes and most effec­tive treat­ments for these dis­or­ders,” says Richard E. Har­ris, Ph.D., research inves­ti­ga­tor in the Divi­sion of Rheuma­tol­ogy at the U-M Med­ical School’s Depart­ment of Inter­nal Med­i­cine and a researcher at the U-M Health System’s Chronic Pain and Fatigue Research Center.

The name of one of the authors of the paper, Dr. Daniel J. Clauw, will be famil­iar to many of you from other stud­ies on fibromyal­gia. He says that, “In peo­ple with­out pain, these struc­tures encode pain sen­sa­tions nor­mally. In peo­ple with fibromyal­gia, the neural activ­ity increased. These stud­ies indi­cate that fibromyal­gia patients have abnor­mal­i­ties within their cen­tral brain structures.”

Sci­enceDaily: Pain From Fibromyal­gia Is Real, Researchers Say

December 1, 2006   Posted in: Fibromyalgia, From the news, Neurology, Pain  11 Comments