Fight Brain Fog!

Or, at the very least, give your­self more resources to fight it!

Cog­ni­tive abil­i­ties are like mus­cles, in that they have to be devel­oped and exer­cised reg­u­lar­ly, even stretched to keep them flex­i­ble. We can’t nec­es­sar­i­ly avoid the cog­ni­tive deficits that come with some of our ill­ness­es, or as a side effect of our med­ica­tions. What we can do is improve our fac­ul­ties, giv­ing us a bet­ter lev­el of over­all func­tion­ing despite those deficits.


Ways to Improve Your Men­tal Fit­ness
is an excel­lent arti­cle on the sub­ject. I rec­om­mend read­ing it and not­ing some new things to try.

Per­son­al­ly, I find that doing things like a Sudoku or cross­word puz­zle or a cou­ple of rounds of soli­taire Mahjongg each day help me “wake up” my brain and think bet­ter. I’ve long wished I had access to the Nin­ten­do brain train­ing game (Brain Age? some­thing like that), as it sounds like just the thing.

I real­ly wor­ried about tak­ing col­lege cours­es, because I know that if I had to take an IQ test these days, my score would be marked­ly low­er than it was pre-FMS. Hap­pi­ly, I found that tak­ing the cours­es helped me to regain some men­tal agili­ty. I still have mem­o­ry prob­lems, and all bets are off dur­ing a bad flare—but I def­i­nite­ly feel that I’m cop­ing bet­ter on a day to day basis.

Now that I’m not in school for­mal­ly, I’ve been learn­ing to pro­gram. It’s anoth­er kind of think­ing, and one I’ve thought about acquir­ing for years. It has­n’t been easy, but I’m doing it, and it cer­tain­ly is stretch­ing my men­tal mus­cles.

Mak­ing music is anoth­er thing that works for me. I’ve been re-learn­ing to play the ukulele, some­thing I orig­i­nal­ly learned in the sec­ond grade. I used to know how to play piano, flute, and oth­er instru­ments

I’ve always been a singer, pri­mar­i­ly, though

, and I’m sur­prised at how much I’ve for­got­ten about read­ing music. I “know” the notes, but I’m so slow that I have to stop and think, “Now, wait, that’s two lines below the bass clef, so…” when it used to be as easy as read­ing any Eng­lish text. The more I work with it, though, the more I find the exer­cise of think­ing in anoth­er lan­guage to be use­ful as an exer­cise.

What are you doing to stay sharp? Have you tried any of the activ­i­ties rec­om­mend­ed in the arti­cle?

Canaries Are Us

Have you ever heard of how min­ers used to use canaries to test the air in mines? The birds would get ill, or even die, from bad air much more quick­ly than humans would real­ize that the air was bad, allow­ing the humans to get out of the mine.

Those of us who have seri­ous cas­es of FMS and CFS/ME are human canaries. We often react far more sen­si­tive­ly to EVERYTHING — med­ica­tions, weath­er changes, tem­per­a­ture changes, drafts, out­gassing from new uphol­stery or car­pets, VOCs in fresh paint, clean­ing chem­i­cals, pes­ti­cides, air pol­lu­tion, preser­v­a­tives — you name it. Any­thing which puts any kind of stress on your body or your psy­che can pro­voke a flare. Most of us react by try­ing to avoid stres­sors as a main strat­e­gy.

We can’t avoid all stres­sors. We can’t man­date that every­one at the gro­cery store refrain from using fra­granced prod­ucts. I’m find­ing that we can’t always count on vital parts of our sup­port net­work stay­ing in place, because peo­ple change. We can’t avoid the weath­er and its effects on us.

And some­times we need some­thing, like radi­a­tion ther­a­py or chemother­a­py, to treat anoth­er con­di­tion, and we know that it will be a major stres­sor. There is no guar­an­tee as to whether or not you’ll have a flare pro­voked by radi­a­tion ther­a­py, of course. If your oncol­o­gist says that you need that in order to treat can­cer, it prob­a­bly isn’t wise to refuse it. 1 How­ev­er, what you should do is make sure that you take real­ly good care of your­self oth­er­wise, and reduce your body’s over­all stress load.

The best way to deal with being a canary is to take good care of your­self. Take care of the basics by doing all of those things you know you should do any­way.

  • Estab­lish a reg­u­lar sleep sched­ule that ensures that you get plen­ty of qual­i­ty sleep, and stick to it. You may need reg­u­lar naps as part of your sleep sched­ule. My rheuma­tol­o­gist pre­scribed brief hourly naps for me at one time. Do what you need to do.
  • Eat enough of the right kinds of foods to nour­ish your body and spir­it, and make sure that they’re of good qual­i­ty, as fresh and free of chem­i­cals as pos­si­ble. Many peo­ple find it bet­ter to eat mul­ti­ple small meals through­out the day rather than to have three larg­er meals sep­a­rat­ed by many hours of noth­ing.
  • Make sure that you have a safe, qui­et retreat that is clean, free of pol­lu­tants, and qui­et. If you’re prone to migraines or oth­er­wise sen­si­tive to light, put in black­out cur­tains so that you can con­trol the light in your safe space.
  • Get enough light. Your body needs it to pro­duce vit­a­min D. If you don’t get out in the sun­shine very often, use a light box. There are some very good, inex­pen­sive ones avail­able now.
  • Get in touch with nature if at all pos­si­ble. Even if you only go out­side for five min­utes a day, you’ll feel more ground­ed and refreshed for that time.
  • Move. Be gen­tle with your­self, but get up and move at least once every hour. Stretch your mus­cles and get your blood mov­ing. It will help.

1 This isn’t the­o­ret­i­cal, but a response to a read­er.

Getting Better

I’ve been very busy over the last six months and had some major changes in my life that have been very stress­ful. As I’ve said else­where, my main strat­e­gy in deal­ing with fibromyal­gia has been to reduce stress in my life as much as pos­si­ble.

Unfor­tu­nate­ly, the main source of stress in my life over the last year was my rela­tion­ship with my life part­ner. That end­ed in Jan­u­ary, which led to a brief peri­od of great­ly increased stress—moving house, major lifestyle changes, etc. I end­ed up in the hos­pi­tal for a brief time due to depres­sion, which is one of my biggest health issues.

How­ev­er, I had begun mak­ing some big changes a few months ear­li­er. I had start­ed on Weight Watch­ers, stick­ing to most­ly fresh, local food. I had re-com­mit­ted myself to exer­cis­ing, join­ing the YMCA and get­ting seri­ous about fit­ness. I had also found a good ther­a­pist and begun Dialec­ti­cal Behav­ioral Ther­a­py, which com­bines mind­ful­ness tech­niques with cog­ni­tive behav­ioral ther­a­peu­tic basics.

I believe those changes allowed me to avoid a total col­lapse despite the major cri­sis that struck in Jan­u­ary. I’ve also lost weight, although that isn’t the pri­ma­ry goal of the changes. My total pain lev­els have been reduced and I’ve been able to reduce the dosage of one of my med­ica­tions and stop tak­ing two oth­ers. At this point, I’m hop­ing that I can return to work before too long.

I’m not always able to get to the Y when I like, and weight-bear­ing exer­cise is still painful (I have degen­er­a­tive disc dis­ease and arthri­tis), so I’ve had to be cre­ative in find­ing ways to be active at home. It’s pos­si­ble to do so, though.

As lit­tle as five min­utes of activ­i­ty at a time through­out the day can make a major dif­fer­ence in pain lev­els, believe me. I’m for­tu­nate enough to have access to a pool in the neigh­bor­hood, but if you don’t, you can stop and stretch for a few min­utes. Or hope about some light yoga? I found some free yoga videos that are acces­si­ble to any­one with a net con­nec­tion on YouTube and var­i­ous web sites. There are even chair exer­cis­es for those who aren’t able to get up and move around. Any­thing will help.

Remem­ber to stay hydrat­ed, before, dur­ing, and after your move­ment peri­ods. It’s sum­mer in my half of the world, so heat that requires more hydra­tion all by itself.

Let me know how gen­tly and grad­u­al­ly increas­ing your activ­i­ty lev­els works for you, please. I’m inter­est­ed in hear­ing from you!

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.