I’m a Mémé!

My grand­ba­by has arrived! So we’re short on sleep, but long on love and joy!

Mov­ing up here, the new baby and asso­ci­at­ed sleep loss, change in gen­er­al — they all lead to increased pain. I don’t take any nar­cot­ic pain med­ica­tions any more because the opi­ates just did­n’t pro­vide enough relief to be worth the has­sle of the side effects. I’m still tak­ing Lyri­ca and Cym­bal­ta and they cer­tain­ly help. But for the most part, I have to rely on reduc­ing aggra­vat­ing fac­tors in hopes of avoid­ing flares. That isn’t easy, and it was impos­si­ble with the move and now the new baby. But I do have cop­ing strate­gies that make every­thing bet­ter! What does that look like?

I love my job, but it’s fair­ly stress­ful, which leads to increased pain and oth­er prob­lems. I had to take some time off work. I know that I’m priv­i­leged to be able to do that, even if it is a sac­ri­fice.

My bed­room is set up as my sanc­tu­ary. I have a real­ly great mat­tress, which is impor­tant, with lots of good pil­lows. I’m away from any noise, and I have black­out cur­tains over the win­dows. I have a fan set up to give me just the right amount of air­flow, but I can switch it off from my bed if I need to do so. I also have a good, qui­et air clean­er in the room.

I’ve been care­ful to keep up my vit­a­mins and med­ica­tions. I find that set­ting them up once a week in a good med­i­cine box helps a great deal with keep­ing every­thing straight.

Stay­ing hydrat­ed is also impor­tant. My Apple water bot­tle is always with me! If you don’t like the taste of water, con­sid­er try­ing some of the drops that give a lit­tle bit of fla­vor with­out adding any calo­ries.

I’m not at the com­put­er as much as I am when I’m work­ing, but I use a few util­i­ties to make the expe­ri­ence health­i­er when I am. The first is f.lux, which changes the light from your com­put­er mon­i­tor to match the sun (or to be warm at night, instead of bright like the sun). It makes your com­put­er mon­i­tor look bet­ter and makes it health­i­er for you to use it. It’ll also remind you of when you should get off the com­put­er and go to bed, if you set that part up. The sec­ond is Break­time, which blacks out my Mac’s screen at pre­de­ter­mined inter­vals, forc­ing me to take a break. It’s avail­able for iOS (iPhones, iPods and iPads) too! Time Out is anoth­er alter­na­tive for Macs. If you’re a PC user, try WorkRave (Windows/Linux).

Yoga helps keep me mov­ing. I’m a fan of Curvy Yoga, and have three of Anna Guest-Jel­ley’s DVDs that I enjoy using. Any­one can do her exer­cis­es!

Final­ly, med­i­ta­tion has become an impor­tant part of my over­all health plan. I like guid­ed med­i­ta­tions, and have found some good apps for iOS that give me a vari­ety to choose from. I’m sure that there are sim­i­lar apps avail­able in the Play Store for Android users. If you’re new to med­i­ta­tion, I’ve heard many good things about Head­space, which is avail­able for both plat­forms. (I real­ly love their Get Some/Give Some pol­i­cy, too.)

How are you cop­ing with your fibrant life late­ly?

 

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!

Hope for Pain Relief

I’ve known of mind­ful­ness prac­tices for sev­er­al years, and read Full Cat­a­stro­phe Liv­ing: Using the Wis­dom of Your Body and Mind to Face Stress, Pain, and Ill­ness by Jon Kabat-Zinn sev­er­al years ago. It is one of the books I’ve rec­om­mend­ed on this blog in the past.

I have only recent­ly, though, tru­ly com­mit­ted myself to using the prac­tices. I have to say that I was shocked to find that when I give myself over to the spir­it of some guid­ed med­i­ta­tions, the pain is gone. I am still on my med­ica­tions, but I’m going down on dosages and using no break­through pain med­ica­tion these days.

Kabat-Zinn has pub­lished many oth­er prod­ucts, includ­ing a CD of med­i­ta­tions enti­tled Mind­ful­ness Med­i­ta­tion for Pain Relief: Guid­ed Prac­tices for Reclaim­ing Your Body and Your Life. I’m so impressed with the qual­i­ty of his work on The Mind­ful Way through Depres­sion: Free­ing Your­self from Chron­ic Unhap­pi­ness and the oth­er books I’ve men­tioned that I have no hes­i­ta­tion in rec­om­mend­ing that record­ing. I’d love to hear from oth­ers who are using mind­ful­ness prac­tices in their recov­ery, too!

Long term opiate use safe; One woman’s experience with Savella

There are two great arti­cles from Karen Lee Richards in Health­Cen­tral’s Chron­ic Pain Con­nec­tion newslet­ter today.

The first, Long-Term Opi­oid Ther­a­py – What Are the Effects?, brings us the results of Dr. For­est Ten­nan­t’s ground-break­ing study. He eval­u­at­ed 24 chron­ic pain patients from 30 to 79 years old who had been using opi­oids for 10 to 35 years, and “con­clud­ed that the sig­nif­i­cant improve­ments in qual­i­ty of life and phys­i­cal func­tion­ing from opi­oid ther­a­py are so pos­i­tive they out­weigh any neg­a­tive com­pli­ca­tions, which can be eas­i­ly man­aged.”

Almost all of the patients (22 of 24) said their pain had per­ma­nent­ly decreased over time. And the vast major­i­ty (20 of 24) felt their opi­oids still pro­vid­ed the same relief as when they start­ed treat­ment. All of the patients report­ed one or more func­tions or activ­i­ties they can do now that they could­n’t do pri­or to begin­ning opi­oid ther­a­py (i.e., get out of bed every­day, take walks, shop or vis­it friends).

The arti­cle details the patients’ diag­noses and gives fur­ther infor­ma­tion, and I encour­age you to read the rest of it. While the study was small and obvi­ous­ly needs to be repeat­ed with a larg­er group, this is mar­velous news, and I for one am very grate­ful for Dr. Ten­nan­t’s work and the par­tic­i­pa­tion of his sub­jects.

I have to say that I find Health­Cen­tral’s sites to be gen­er­aly decent, but the Chron­ic Pain Con­nec­tion is out­stand­ing. I encour­age you to vis­it and sub­scribe to the newslet­ter.

Next, in One Patien­t’s Expe­ri­ence with Savel­la for Fibromyal­gia, Richards brings us detailed feed­back from one of her con­tacts, Bren­da, who has been tak­ing the new drug for sev­en weeks. Many of us have heard of Savel­la, but so few have had an oppor­tu­ni­ty to try it or know any­one who have that this arti­cle is very help­ful in mak­ing a deci­sion as to whether or not to ask our physi­cians for it. After read­ing about Bren­da’s advice regard­ing insur­ance expe­ri­ences, deal­ing with side effects, and pos­i­tive results, I for one will be talk­ing to my neu­rol­o­gist about a tri­al pack.

Abortion is NOT related to FMS!

I detest igno­rant big­ots. And I absolute­ly con­sid­er the fol­low­ing hate speech:

So like an HPV diag­no­sis in some­one would almost guar­an­tee that oth­ers would know the per­son­’s poten­tial morals or lack there of, and HIV almost always denotes a gay man, a diag­no­sis of fibromyal­gia could poten­tial­ly indi­cate a woman who has abort­ed a child. Just a thought.

Gosh — so all those males who have fibromyal­gia were actu­al­ly born as women, and had abor­tions before they had sex changes and devel­oped FMS? Every­body who is HIV+ because of blood trans­fu­sions or oth­er issues is a gay man?

I’ve nev­er even con­sid­ered hav­ing an abor­tion. My child cer­tain­ly has­n’t had one, and she devel­oped FMS when she was nine years old!

I did com­ment at the blog­ger’s site, giv­ing her infor­ma­tion on all the proof that FMS does exist and that our pain is real. I don’t believe she’ll ever approve the com­ment, because she does­n’t care about the truth–she just wants to spread her nasty pro­pa­gan­da.

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!