How do you feel when you return home at the end of the day?

fractured reality/grace under pain

The NaBloPo­Mo prompt for today:
How do you feel when you return home at the end of the day?

I’m not sure I should have answered this one, as I doubt that my answer will be in sync with the intent of the ques­tion. I don’t leave home every day to go to work, or leave home every day, peri­od.

How­ev­er, when I do leave home, how I feel when I return depends on many fac­tors. How did I feel before leav­ing? How long was I gone, and how much phys­i­cal, intel­lec­tu­al, and emo­tion­al ener­gy did I have to expend while I was out? Did I have to deal with any­thing unex­pect­ed, good or bad? How many peo­ple was I around? Were they strangers or peo­ple known to me? Did I encounter them all at once, or in small groups of one or two at a time? Was Sam with me as a buffer? fHow’s my blood sug­ar? Am I well hydrat­ed? What was the weath­er like? Did I remem­ber to take my reg­u­lar med­ica­tions? What about tak­ing break­through pain med­ica­tion, anx­i­ety med­ica­tion, or a mus­cle relax­ant before I found myself in a state where they would­n’t work very well? Did I use my scoot­er if there was much walk­ing? How noisy was the envi­ron­ment? Was it drafty, or over­ly hot or cold? Did I have to dri­ve? Was I out to do some­thing I want­ed to do, or was I doing some­thing I had to do?

Fre­quent­ly, I’m so dog-tired that I can bare­ly drag myself in the door. I have actu­al­ly fall­en asleep sit­ting in the car, in the dri­ver’s seat, more than once. (There are plen­ty of rea­sons that I do not dri­ve much any more.) Deal­ing with the secu­ri­ty sys­tem seems an intel­lec­tu­al chal­lenge designed for Ein­stein. I’m eas­i­ly con­fused and my mem­o­ry is beyond poor. Even if I am dehy­drat­ed or I need to eat, I’m too tired to be inter­est­ed in food or even water. If I was out for too long, or if it was a par­tic­u­lar­ly stress­ful peri­od, I get a fever and my body reacts as if I’m in shock. I feel like I’m freez­ing, no mat­ter what the actu­al tem­per­a­ture around me is, and I start shak­ing bad­ly.

So that’s how I feel most days when I return home at the end of the day, if I’ve had to leave home. I think that should go a long way towards explain­ing why I’m such a home­body these days! I am for­tu­nate in that I have Sam, Katie, and oth­ers in my life, so I am able to have a ful­fill­ing life with­out being very adven­tur­ous.

Whoops! Yesterday was FMS/CFW Awareness Day!

I intend­ed to post and maybe even try to get a pod­cast out, but end­ed up using my ener­gy to do an inter­view with a reporter. I don’t know when the piece will come out (it was­n’t for aware­ness day–that was just an amus­ing coin­ci­dence), but I’ll let you know when/if I hear any­thing.

She also inter­viewed Sam, since the top­ic was “fibromyal­gia and inti­ma­cy.” He’s so won­der­ful!

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.

Responses to various comments about ME and FMS

Some of the com­ments are pret­ty old by now, but there are cer­tain themes that come back, over and over again. I’ve decid­ed to answer them once, and that’s it.

ME and FMS are not “lifestyle” dis­eases. Researchers have found genet­ic, neu­ro­log­i­cal and car­di­o­log­i­cal anom­alies, so get off that blame-the-vic­tim bull­shit. We know bet­ter. We’ve done the diet and exer­cise dance. We’ve tried air-clean­ers and remov­ing tox­ins and nat­ur­al cleansers and vit­a­mins and health foods, and while some of them are nicer than the alter­na­tives, they can­not cure chron­ic fatigue syn­drome or fibromyal­gia because they are not part of the cause.

While we’re at it, no, alien abduc­tions don’t cause FMS, either. I know you’re laugh­ing, but there real­ly is site out there that makes such claims. No, I won’t link to it. It’s bad enough that it exists!

“Chron­ic Fatigue Syn­drome” is a total­ly inad­e­quate name for a dis­or­der whose suf­fer­ers expe­ri­ence far, far, more than a lit­tle tired­ness. That’s why we have a new and bet­ter name for CFS, as of Jan­u­ary 2007: ME/CFS, or myal­gic encephalopathy/chronic fatigue syn­drome. The dis­ease has been known as ME all along in the rest of the world, although some­times the acronym was used for myal­gic encephalomyelitis. Per­son­al­ly, I pre­ferred one of the oth­er sug­ges­tions, chron­ic neu­roen­docrineim­mune dys­func­tion syn­drome (CNDS), but I was­n’t on the com­mit­tee.

I would hap­pi­ly rename fibromyal­gia “you don’t want to be me” or “betray­al by entire body, tak­ing your mind with it,” but I don’t think any­body is sug­gest­ing that it be renamed. The name just does­n’t seem ade­quate to its impact, though it’s a lit­tle bet­ter than some of the old­er names, like “rheuma­tism.”

To oth­ers who have said “pre­ven­tion is bet­ter than cure.” Well, yes, and “a stitch in time saves 9.” Yup. I’ve got plen­ty of apho­risms, too. Tell me, pray, how one “pre­vents” dis­or­ders whose ori­gin is unclear? As I said above, researchers have iden­ti­fied genet­ic anom­alies. We have fair­ly good evi­dence that fibromyal­gia, at least, has a genet­ic com­po­nent. We’ve got brain scans show­ing that fibromites’ brains react dif­fer­ent­ly to painful stim­uli, and oth­er tests show­ing that our spinal flu­id has much high­er lev­els of a neu­ropep­tide involved in trans­mit­ting pain impuls­es than non-fibromites.

With that in mind, how would you go about “pre­vent­ing” fibromyal­gia? Advis­ing us not to breed? Many of us have already done so by the time we’re diagnosed—and, of course, that can’t help us when we’ve already got the dis­ease. We can use our own diag­noses as warn­ings that our own chil­dren may have a sus­cep­ti­bil­i­ty to fibromyal­gia, but what then? Smoth­er them in cot­ton bat­ting, to keep them from expe­ri­ence any stres­sors in life that might set off the FMS bomb in their genes?

Being fat does­n’t cause ME or FMS, either, although it’s com­mon to gain weight after devel­op­ing either dis­or­der. I don’t know any­one who is able to main­tain the lev­el of activ­i­ty he or she did before falling ill, and many of the drugs used to treat the symp­toms of these dis­or­ders cause weight gain. Los­ing weight is even more dif­fi­cult for us than for oth­er peo­ple. Telling us that we’d feel bet­ter if we lost weight is not help­ful in the least. I’ve nev­er once heard of any­one who was “cured” of FMS or ME because he or she lost weight—and if it were hap­pen­ing, I would know it, because I pay a lot of atten­tion to these things.

Even if I thought weight loss offered a “cure,” or even ame­lio­ra­tion of symp­toms, I see no rea­son to dis­cuss drugs like Xeni­cal at any length. Any drug or pro­ce­dure promis­ing weight loss will has an easy time get­ting approved because of our soci­ety’s hatred of fat peo­ple. Fen-phen, any­one? “Oh, the drug will kill some patients, or leave them with per­ma­nent heart dam­age? Hell, it’s worth it if there’s a chance of los­ing weight!” The weight-lossself-hatred indus­try has more than enough mon­ey and pow­er to lube their way past any flim­sy lit­tle reg­u­la­tions stand­ing in their way.

Diet and sports and their rela­tion to weight are anoth­er thing all togeth­er, and beyond the scope of this blog. I rec­om­mend you to peruse the worlds of the delight­ful Sandy Szwarc over at Junk­food Sci­ence, who does cov­er that top­ic, fre­quent­ly, thor­ough­ly, and well.

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.