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.

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.

Oxygen for CFS?

A research abstract from Dr. Paul Cheney offers an inter­est­ing con­clu­sion.
Oxy­gen Tox­i­c­i­ty as a Locus of Con­trol for Chron­ic Fatigue Syn­drome
“We con­clude that CFS is an oxy­gen tox­ic state and that oxy­gen tox­i­c­i­ty sta­tus appears to deter­mine out­come in ther­a­peu­tic tri­als and is there­fore, a locus of con­trol in chron­ic fatigue syn­drome.”

The pos­si­bil­i­ty of an effi­ca­cious treat­ment for CFS is excit­ing. I’ll be watch­ing the news for more infor­ma­tion on this angle.

Fibromyalgia or Depression?

There are many peo­ple, espe­cial­ly doc­tors, who claim that fibromyal­gia is just a symp­tom of depres­sion. I’ve had both, and I know the dif­fer­ence quite well. They are very, very dif­fer­ent.

Being in pain all the time can cer­tain­ly lead to depres­sion. That’s just log­i­cal. There are, how­ev­er, peo­ple who have fibromyal­gia who are not clin­i­cal­ly depressed. Depres­sion can also man­i­fest as phys­i­cal pain, but it is does not meet the cri­te­ria for fibromyal­gia.

I was treat­ed for depres­sion for years before I devel­oped FMS, though, and I tru­ly believe that if I’d got­ten prop­er treat­ment for men­tal health issues in my child­hood (post-trau­mat­ic stress dis­or­der and all the com­pli­ca­tions it brought, includ­ing major depres­sive dis­or­der) I prob­a­bly would­n’t have devel­oped FMS.

I nev­er have trou­ble dis­tin­guish­ing between the two, or between either of them and CFS/ME, which I also have. They’re all quite dif­fer­ent.

With FMS, the pain caus­es fatigue, and togeth­er they can (but don’t always) have an affect on your emo­tions. You may feel like doing some­thing, but your body absolute­ly will not coop­er­ate. There have been times when I’ve been feel­ing great, gone out to do some­thing I was SO look­ing for­ward to–and near­ly col­lapsed in the mid­dle of every­thing when my body said, “All right, that’s it, no more. Done. Where’s the bed?” (We’ve joked that if I ever man­age to get a scoot­er or elec­tric wheel­chair, it will have to have a remote con­trol fea­ture so that Sam can steer me on home when I’ve passed out.)

But seri­ous clin­i­cal depression…it does­n’t mat­ter whether you’ve got the phys­i­cal ener­gy or not. Log­ic does­n’t mat­ter. Know­ing that you’d feel bet­ter for hav­ing a nice, hot show­er is utter­ly irrel­e­vant. The fact that the tele­phone ring­ing is con­tribut­ing to your headache, and you could make it stop by mere­ly lift­ing up your arm up push­ing a but­ton, is irrel­e­vant, because lift­ing your arm would take too much damned effort. Yes, some­where, on some lev­el, you may know that you’ll lose yet more func­tion for not get­ting up and doing your exer­cis­es, but it’s less impor­tant than star­ing at the ceil­ing, or the pil­low, or what­ev­er is in front of your face right now. Not that you real­ly make any kind of con­scious val­ue judg­ment or any­thing, but the star­ing has iner­tia going for it. Even if noth­ing IS hurt­ing, even if you have all the ener­gy in the world and you could do any­thing you just don’t care.

Remem­ber that, the next time you hear some­one claim­ing that FMS and depres­sion are the same.

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!

I hope all of you had a great day 🙂

FMS at PostSecret

Did any­one else see this at Post­Se­cret today?

safer.jpg

I was made aware of it by a post to .1 Reac­tions there are fair­ly neg­a­tive, because so many of us have had bad expe­ri­ences with peo­ple who think we’re malin­ger­ing.

I have mixed feel­ings, though. I don’t exact­ly share the sen­ti­ments expressed in the piece, but I do think it’s good art. I can relate to feel­ing like pain has been my entire life. It’s famil­iar. I can’t remem­ber any­thing else, hon­est­ly.

I don’t think I’m “scared to feel bet­ter,” though, because I real­ly resent the pain, the fatigue, and espe­cial­ly the brain fog. I’ve tried every treat­ment to which I’ve been able to get access, with­out much relief. Pain man­age­ment is all that helps in any way now.

I have, how­ev­er, got­ten very anx­ious about try­ing many things. Too many falls, fol­lowed by increased pain and dis­abil­i­ty, have made me incred­i­bly cau­tious. Unfor­tu­nate­ly, I know that leads to more loss of mus­cle mass and endurance. I’m work­ing on get­ting past it. Know­ing is half the bat­tle, right?

Talk to me. What do you think about the art­work?


1 I can’t read Post­Se­cret reg­u­lar­ly. It’s too fas­ci­nat­ing, and a big time sink!

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.