FMS at PostSecret">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!

March 23, 2008 · cyn · 3 Comments
Tags: , ,  · Posted in: Chronic Fatigue Syndrome, Fibromyalgia, Pain

FMS and 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.

March 22, 2008 · cyn · 5 Comments
Tags: , , , , , , , ,  · Posted in: Chronic Fatigue Syndrome, Fibromyalgia, From the news

Free Screen Magnifier Software

This isn’t where I usu­al­ly get geeky, but I think this util­i­ty might be use­ful to many read­ers.

I get notices from the Give­away of the Day and Game Give­away Of the Day sites each day as to what they have avail­able that day. They make arrange­ments with var­i­ous soft­ware pub­lish­ers to dis­trib­ute com­mer­cial soft­ware absolute­ly free in return for adver­tis­ing. The catch is that the soft­ware must be down­loaded and installed with­in the 24-hour peri­od of the give­away.

I’ve been watch­ing the site for a year or so, I think, and have down­loaded and tried quite a few pieces of soft­ware. I’ve nev­er found any mal­ware in any of them, although I believe I’ve read men­tion of peo­ple get­ting unwant­ed soft­ware installed in a bun­dle because they didn’t pay enough atten­tion to what they were agree­ing to dur­ing an install.

Get­ting back to my point, today’s give­away is a nifty util­i­ty that will mag­ni­fy a por­tion of your computer’s screen, enabling you to bet­ter make out tiny print or small details. I didn’t have one of these installed on my machine until about nine months ago, and I wouldn’t want to live with­out it now. There is a free util­i­ty built in to Win­dows, but it isn’t quite as robust as some of the oth­er prod­ucts on the mar­ket. The descrip­tion for this one says:

Mag­ic Lens Max is a real-time, intu­itive and advanced screen mag­ni­fi­er and desk­top view­er to zoom, rotate, enhance, view and cap­ture any area of the screen dis­play. With built-in high­ly opti­mized resam­pling and enhanc­ing fil­ters, Mag­ic Lens Max quick­ly gen­er­ates high-qual­i­ty lens view with clar­i­ty in var­i­ous sit­u­a­tions. It also lets you view­ing in dif­fer­ent col­or mode or through sep­a­rat­ed col­or chan­nels.

As I type this, there’s anoth­er 22 hours and 55 min­utes left to down­load and install Mag­ic Lens Max. Why not give it a whirl?

(Yes, it’s a Win­dows app. Aren’t we the only ones who need such crutch­es?)

Oh — while I don’t find today’s free game offer­ing ter­ri­bly inter­est­ing, I have found some of the games to be very use­ful dis­trac­tions on days that involve too much pain to do any­thing and I can’t focus well enough to read. Pop­ping bub­bles or what­ev­er is a per­fect­ly mind­less pur­suit, and very con­ducive to zon­ing out and get my head away from the pain for a bit. I don’t do “twitch” games, or any­thing that requires a lot of dex­ter­i­ty or is com­plete­ly tied to speed. If I was that dex­trous and/or fast, I’d be doing some­thing more use­ful than play­ing com­put­er games.

February 23, 2008 · cyn · No Comments
Tags: , , ,  · Posted in: Resources, Technical

The Value of Education for Chronic Illness Patients

Paula Kamen, author of All In My Head, talks about the val­ue of edu­ca­tion in cop­ing with chron­ic ill­ness in an excel­lent edi­to­r­i­al in the New York Times.
Leav­ing the Rab­bit Hole. This pas­sage, in par­tic­u­lar, spoke to me:

The worst thing, to me, about hav­ing a non-stop mul­ti-year headache isn’t nec­es­sar­i­ly the pain. Or the way it tends to dis­rupt inti­mate rela­tion­ships, emp­ty all finan­cial reserves, and sab­o­tage the best-laid career plans. It’s not even the end­less bar­rage of (albeit well-mean­ing) sug­ges­tions for “cures” from every­one you meet, most of which you’ve already tried any­way (except for the colon cleans­ing and the Jews for Jesus con­ver­sion).

No, it’s the emo­tion­al suf­fer­ing – from all the guilt and the shame, of patients like me think­ing it’s our entire fault, and maybe all in our heads.

She also men­tions a good site for any­one who has prob­lems with migraines, Rob­bins Headache Clin­ic.

February 19, 2008 · cyn · One Comment
Tags: , , , , ,  · Posted in: Education, Pain, Resources

& Fibromyalgia: Lessons Learned and Other Random Thoughts">Excellent article: Pregnancy & Fibromyalgia: Lessons Learned and Other Random Thoughts

ButY­ouDont­Look­Sick has a mar­velous arti­cle up today: ButYouDontLookSick.com : Preg­nan­cy & Fibromyal­gia: Lessons Learned and Oth­er Ran­dom Thoughts.

I’m in the “0.08% chance of that hap­pen­ing” group, like the author. I was sick all the time through­out my one suc­cess­ful preg­nan­cy. Yes, all day, every day, from about a week after con­cep­tion ’til months after the deliv­ery, because it took that long before all the hor­mones set­tled back down. My tum­my hasn’t been the same since—I get sick to my stom­ach far more eas­i­ly now than I ever did pre-preg­nan­cy.

I also felt seri­ous­ly mis­led, as I’d heard about this “morn­ing sick­ness” thing, but all the time sick­ness? Nobody talks about that!

That was in 1990, and I wasn’t diag­nosed with FMS until 1993. I doubt my trou­ble had as much to do with fibromyal­gia as to the fact that I’ve had hor­mon­al prob­lems (PCOS, par­tic­u­lar­ly) since hit­ting puber­ty. My body just doesn’t like high hor­mone lev­els.

Any­way, head on over to ButY­ouDont­Look­Sick and com­ment. They’ll be hap­py 🙂

February 4, 2008 · cyn · No Comments
Posted in: Fibromyalgia

ME and FMS">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.

January 23, 2008 · cyn · 8 Comments
Tags: , , , , , , , , , , , , , , , ,  · Posted in: Blogroll

Working?

I’m work­ing on a new pod­cast episode. Real­ly!

And I’d like very much to hear from you. Are you work­ing? Have you had to change any­thing about work since devel­op­ing a chron­ic ill­ness? Have any of you gone back to work after tak­ing some time off? Any­body will­ing to be inter­viewed?

Thanks!

January 22, 2008 · cyn · 4 Comments
Tags: , , , , ,  · Posted in: disability, employment

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.

January 9, 2008 · cyn · 2 Comments
Tags: , , , , , , , ,  · Posted in: Chronic Fatigue Syndrome, Fibromyalgia, From the news, Pain

New Resource: Curehunter.com

Cure­hunter is an inter­est­ing addi­tion to our online tool­box. It’s a visu­al med­ical dic­tio­nary. Here’s part of what it gives me when I look up fibromyal­gia:

November 24, 2007 · cyn · No Comments
Tags: , , , ,  · Posted in: Fibromyalgia, Resources

Not Dead Yet!

I haven’t giv­en up on this blog, either. Or even the long-miss­ing pod­cast! I don’t know why I haven’t post­ed in so long, hon­est­ly. I’ve been in a very qui­et time, but it’s time to leave the shell.

I have had more health prob­lems, and I’m on more med­ica­tions now. I’ve added a wheel­chair to the walk­er and cane, and need an elec­tric chair or scoot­er.

At the same time, I’ve con­stant­ly read things and thought, “I should post that to Fibrant Liv­ing.”

So I am, now. I hope some of you are still read­ing!

November 24, 2007 · cyn · No Comments
Tags: , , ,  · Posted in: Communication, Fibromyalgia