I’m alive! How about you?

It’s been an insane­ly long time since I gave this site its due. I sup­pose the real prob­lem with blog­ging about health prob­lems is that the peo­ple who know them best, by def­i­n­i­tion, have health prob­lems. I’d love to find some­one with whom to co-write this thing, so we could cov­er for each other!

Any­way, I had an insane­ly long bad peri­od but I’m feel­ing bet­ter now. One fac­tor in the improve­ment was stop­ping Effex­or XR, which I’d tak­en for years. I did­n’t actu­al­ly do that on purpose—It was due to an insane­ly irre­spon­si­ble doc­tor who refused to see me because of a screw-up in his office’s pro­ce­dures, not any­thing I’d done wrong. I had to just stop tak­ing it, cold turkey, which led to seizures and oth­er prob­lems. On the plus side, though, I’ve been far less drowsy and don’t need near­ly as many hours of sleep as I did before. (I’m actu­al­ly expe­ri­enc­ing some insom­nia, which isn’t good, but it’s a change.)

Any­way, my Social Secu­ri­ty dis­abil­i­ty claim was final­ly approved after over five years of wait­ing. They haven’t start­ed pay­ing any­thing yet, but that’s sup­posed to hap­pen Real Soon Now. I have to tell you, though—the Medicare thing is a con­fus­ing maze of choic­es, obvi­ous­ly designed by bureau­crats. You almost need to become a Medicare expert just to know what ben­e­fits are avail­able and how to get them!

For now, here’s a link to an arti­cle I found interesting:
Do Fibromyal­gia Pain Killers Make You a Like­ly Crime Victim?

I don’t agree with all of the advice. Peo­ple in Geor­gia have been arrest­ed for hav­ing legit­i­mate­ly pre­scribed med­ica­tions because the med­ica­tions weren’t in pre­scrip­tion con­tain­ers. It’s a real nui­sance to car­ry the bot­tles instead of just what you need, and it prob­a­bly does put us at greater risk for crime—but is it worth being arrest­ed? That’s a Catch-22.

Why Can’t We Think Well When We’re Sick?

This isn’t specif­i­cal­ly about CFS/ME or FMS, but I found it inter­est­ing, and I think it makes sense.

Why Men­tal Lethar­gy When Sick

Dur­ing an infec­tion, humans typ­i­cal­ly expe­ri­ence a set of phys­i­o­log­i­cal and psy­cho­log­i­cal symp­toms, includ­ing fever, con­fu­sion, decreased moti­va­tion, depres­sion and anx­i­ety that are accom­pa­nied by a slow­ing of movements.

These changes, col­lec­tive­ly known as “sick­ness behav­ior,” are the body’s way of con­serv­ing ener­gy dur­ing ill­ness so that an effec­tive immune response can be launched. This new study helps researchers fur­ther under­stand how cytokines com­mu­ni­cate between the immune sys­tem and the brain to pro­mote sick­ness behavior.

Since many peo­ple with CFS/ME have chron­ic fevers and oth­er symp­toms sim­i­lar to those of infec­tious ill­ness­es, I have to won­der if the results of this study will be exam­ined with regards to CFS/ME.

Cortisol and FMS and CFS/ME?

There’s been a lot of buzz over the past week about a study pub­lished in the Jour­nal of Chron­ic Fatigue Syn­drome that sug­gests treat­ing fibromyal­gia and ME/CFS with cor­ti­sol (a steroid), based on the fact that most patients have low cor­ti­sol lev­els. I do not have access to that pub­li­ca­tion, but would like to point out some concerns.

First, most of the reports are not clear about the fact that this was a lit­er­a­ture study, rather than a con­trolled clin­i­cal study.

Sec­ond, while at least one sto­ry did claim that the lit­er­a­ture study was fol­lowed up with an “obser­va­tion­al study” in which all of the FMS/CFS/ME patients in a par­tic­u­lar clin­ic were giv­en cor­ti­sol. That does not meet the stan­dards of a con­trolled, clin­i­cal study, which would require an untreat­ed con­trol group and a group receiv­ing place­bos instead of cortisol.

There have been mul­ti­ple clin­i­cal stud­ies of the effects of steroids on FMS/CFS/ME. I found records of stud­ies of pred­nisone and hydro­cor­ti­sone, in par­tic­u­lar. Those stud­ies did not find any pos­i­tive effects from treat­ment com­pared to place­bos, and in some cas­es there were sig­nif­i­cant prob­lems result­ing from the treat­ments. I did not find a study specif­i­cal­ly involv­ing cor­ti­sol, but I don’t know if that’s because there has­n’t been one or because I don’t have access to the appro­pri­ate data­bas­es. (I’m sure there are more stud­ies out there, but I don’t have access to Medline.)

I’d strong­ly sug­gest wait­ing for the results of repeat­able, con­trolled clin­i­cal tests of cor­ti­sol before try­ing steroid treat­ment. Steroids have seri­ous side effects, and should not be tak­en lightly.

Pain cures for women; Migraines from low-energy light bulbs

I’ve had these two sto­ries book­marked to post here for a bit, so it seems past time for me to actu­al­ly do it.

The best new pain cures, with a focus on women

Many women have a tough time find­ing the right kind of relief for their pain –and for good rea­son: Until recent­ly, experts had­n’t actu­al­ly stud­ied wom­en’s pain specif­i­cal­ly, and most research was­n’t con­duct­ed with a wom­an’s hor­mones and physique in mind. All that’s chang­ing, though.

Docs now know that to ban­ish our aches, they must devel­op treat­ments for­mu­lat­ed for wom­en’s bod­ies. What’s more, researchers are also look­ing for — and find­ing — ways to head pain off at the pass, so those of us with chron­ic trou­bles such as migraine, fibromyal­gia, or back­ache don’t have to be hob­bled by pain on a dai­ly basis. Here, how the new research will help you live an (almost) pain-free life. Health.com: Smart ways to ban­ish pain

It’s def­i­nite­ly good news that they’re doing the research, at least! There’s good infor­ma­tion here on how estro­gen and oth­er hor­mones affect the cen­tral ner­vous sys­tem. The arti­cle specif­i­cal­ly men­tions treat­ment for migraines and oth­er headaches, fibromyal­gia, and chron­ic fatigue syndrome.

There’s a def­i­nite anti-painkiller bias in the arti­cle, unfor­tu­nate­ly. The author does­n’t seem to grasp the fact that ibupro­fen isn’t enough “pre­ven­tive med­i­cine” for some of us, but if you can look past that it’s a decent article.

Low-ener­gy bulbs ’cause migraine’

I’ve had con­cerns about this issue myself. Flu­o­res­cent bulbs have always been a prob­lem for me, and the “low-ener­gy” bulbs that are so pop­u­lar now are flu­o­res­cent. The flick­er­ing of flu­o­res­cent bulbs can also trig­ger seizures in epilep­tics. While man­u­fac­tur­ers claim that the new bulbs don’t flick­er, they still cause prob­lems for some peo­ple. Eye strain from the low-inten­si­ty light is cit­ed, but some of us do per­ceive flickering. 

The U.K. plans to ban the sale of con­ven­tion­al (incan­des­cent) bulbs with­in the next four years. Patients’ asso­ci­a­tions are ask­ing that the old­er bulbs remain avail­able for those who have issues with the new­er ones.

This arti­cle did­n’t hap­pen to men­tion anoth­er prob­lem with the dis­pos­al of the bulbs: they con­tain mer­cury. You can’t just toss them in the trash, and if one breaks you have an envi­ron­men­tal haz­ard. That cost is sel­dom men­tioned when peo­ple talk about how much can be saved by switch­ing to those bulbs. When I looked for legal ways to dis­pose of the bulbs here in Atlanta1, all of the results involved pay­ing $1 or more per bulb. How many peo­ple are going to do that? Not many, which means that the bulbs will go into land­fills, releas­ing the mercury.

In look­ing for a cita­tion regard­ing the dis­pos­al prob­lems, I came across anoth­er arti­cle that states that the flu­o­res­cent bulbs also cause skin heal­ing prob­lems for those who are pho­to­sen­si­tive due to lupus, eczema, or oth­er conditions.

I think we’ll keep buy­ing the full-spec­trum incan­des­cent bulbs for now.

1 I used Earth911, an excel­lent site for any­one in the U.S.

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.

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

Stress during pregnancy may lead to increased risk of fibromyalgia for baby girls

From a Uni­ver­si­ty of Pitts­burgh School of Med­i­cine Press Release about find­ings being pre­sent­ed at the Inter­na­tion­al Con­gress of Neu­roen­docrinol­o­gy June 19–22, 2006:

Stress­ful or trau­mat­ic events expe­ri­enced dur­ing preg­nan­cy can have long-last­ing effects on the fetus, yet these effects may not become appar­ent until many years lat­er, accord­ing to a study sug­gest­ing that girls born of such preg­nan­cies may be at greater risk for devel­op­ing a painful mus­cle con­di­tion called fibromyal­gia as adults.

The details sound very much like recent find­ings regard­ing abnor­mal­i­ties in reac­tions to stres­sors in chron­ic fatique suf­fer­ers. That could lend cre­dence to those who believe fibromyal­gia and chron­ic fatigue syn­drome are relat­ed conditions.

Music ‘can reduce chronic pain’

From BBC News via the Net-Gold list:

Research has con­firmed lis­ten­ing to music can have a sig­nif­i­cant pos­i­tive impact on per­cep­tion of chron­ic pain.

US researchers test­ed the effect of music on 60 patients who had endured years of chron­ic pain.

Those who lis­tened to music report­ed a cut in pain lev­els of up to 21%, and in asso­ci­at­ed depres­sion of up to 25%, com­pared to those who did not listen. 

While I doubt the IRS is going to let us claim iPods as med­ical equip­ment for tax deduc­tions any time soon, it’s well worth exper­i­ment­ing to see what music soothes each of us.