Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, August 29, 2012

Video Explains How to Use Heart Rate Monitor to Avoid Post Exertional Malaise in ME/CFS

This excellent recent webinar, which has been uploaded to YouTube, explains how to avoid crashes from post exertional malaise (PEM).  It was hosted by the CFIDS Association of America and includes three panelists from the Pacific Fatigue Lab at the University of the Pacific in Sacramento, California.  All three of the panelists appear to be highly regarded researchers in the field.

The total run time of the video is approximately an hour and 40 minutes.  The first hour features the panel answering 10 frequently asked questions about PEM.  The remainder features questions from the online audience.  For those who don't have the time or mental energy to watch the whole video, I'd like to suggest skipping to a couple key highlights.

Question #6 - 25:30 to 29:30

This brief 4 minute segment explains what kinds of life events typically cause a crash, and emphasizes how the threshold is usually much lower than patients expect it to be.  This might be a good segment to show to family and friends who have a hard time understanding why you need to avoid even relatively low key activities.  

Question #7 - 30:24 to 42:30

This 12 minute segment explains how to use a heart rate monitor (HRM) to avoid crashing and to get off of the push/crash cycle.  The best advice was to set your heart rate monitor's alarm to sound when your heart rate reaches 10 bpms below your anaerobic threshold (AT). When you hear the alarm go off, you're supposed to stop what you're doing until your heart rate goes down.  The panelists say that one can control the frequency of crashes if they remain disciplined with this approach.   

Somewhat frustratingly, the panelists make every effort to avoid suggesting a formula for determining one's AT.  (Such formulas, however, are widely available in other places, such as here in Sue Jackson's blog).  Rather, they emphasize that one can only determine his/her AT through careful trial and error with a HRM.  They also state that a person's AT varies from day to day depending on whether the person is crashed.  While that may be true, it's nice to use an AT formula as a starting point.

When pressed for a more specific answer later in the presentation, one of the panelists stated that most PWMEs have an AT between 90 and 115.  She said it is rare for a PWME to have an AT above 115, but a few are in the 115 to 120 range.  (See video at 128:00)

Other Notable Segments    

44:40 - Patients can raise their AT over time if they are careful and avoid the push/crash cycle.  

45:00 - How to prepare an exercise plan that stays within your limits.

47:50 - Standing requires 25% more energy than sitting.  Any activity that can be done sitting should be done sitting.  PWMEs need to save whatever energy they can and bank it for later. 

49:30 - One panelists suggests that PWMEs should "use the power of blue" and obtain a handicapped parking pass.  Even the evergy saved by walking 20 or 30 fewer yards is critical for PWMEs.  The panelist notes that many PWMEs don't like to think of themselves as handicapped, but the objective data from exercise fitness tests shows that they are functioning at a lower level than people with severe heart conditions.

106:00 - There are no reliable studies that show that CoQ10 supplementation helps avoid or recover from PEM crashes.

132:00 - The only "treatment" the panelists believe may aid recovery from PEM, besides rest, is drinking water, particularly with small amounts of salt.  

Tuesday, August 28, 2012

Baby Calvin's Birthday Party

I'm trying to get back to regularly posting summaries of my internet research on various treatments, but I've been busy and crashed lately, so we'll have to stick to personal updates for now.

We hosted my daughter's first birthday party over the weekend with thirty guests at our house.  The party featured all the usual amusing scenes of an infant's birthday party, including the obligatory photo-op of baby covered head to foot in cake frosting, and baby's interest in wrapping paper over the actual presents.  Naturally, my daughter was bewildered by the whole event at first, but seemed to relish the attention by the end.

I crashed again after the party.  I, of course, knew that I would crash, but made a calculated decision to enjoy the party and pay the price later.  I'm still on a bit of a mental high from the social aspect, which eases the frustration of the physical crash slightly.  At least this time, the guests all came to me, and not vice versa.

August has been a bad month for grandparents.  I started the month with 3 still living and am ending the month with just one.  On top of losing my paternal grandfather earlier in the month, I lost my maternal grandmother last week.  Ostensibly, this would require yet another out of town trip to the funeral - this time a one hour flight to San Jose on Saturday.  So far this summer, I've kept up with all of my family obligations and dutifully paid the price afterwards.  However, this might be the occasion where I finally say "no" and do what I need to do to get off of this push/crash least for a while.

On the one hand, it's not fair to my mother and late grandmother that I made all of these other recent family obligations but might miss this one.  But on the other hand, it's just bad luck that my grandmother's funeral occurs last in a gauntlet of family obligations since the beginning of August:  funeral, wedding, birthday party, funeral.   I think my grandmother would understand...I hope.  At this moment, though, I'm still not sure what I'm going to do...

Finally, in recent weeks I purchased both a heart rate monitor and a far infrared sauna, and am enjoying some enlightening results from both.  I plan to write posts about both of them after I've had time to experiment further and draw more concrete conclusions.

Friday, August 24, 2012

Virus vs. Retrovirus (in cartoon)

I can't take credit for this one... just found it online.  Thought it was funny though.

Thursday, August 23, 2012

Pride in Small Accomplishments (The Black Ink on My Balance Sheet)

The other day, my wife came down with a moderate cold or flu.  Because it wasn't a severe illness, she went to work anyway.  Midway through the day, I received a text from her that said, "I have a new found respect for what you do.  Even simple tasks are tough when you're sick."

My wife's text validated a vague attitude I'd fostered since getting sick last year:  a sense of satisfaction in accomplishing tasks that I previously took for granted -- tasks like washing the dishes, making the bed, pulling a few weeds, going to work, or changing a diaper.  Fifteen months ago, these things were just mundane chores.  They barely registered on the satisfaction scale.  But somehow the addition of a little adversity in the form of ME/CFS rendered them 10 times more satisfactory.

I'm not sure exactly why these simple tasks bring more satisfaction, but I have a couple theories.  The simple explanation is that the amount of satisfaction in completing a task is proportional to its difficulty.  Since ME/CFS makes nearly any task more difficult, it also makes nearly every task more gratifying.  But I think there's more to it than that.  Perhaps it has something to do with the pleasure of defiance.  ME/CFS comes into your life and tries to dictate every aspect of it: what you can do, when you can do it, and for how long.  To the extent one can do so safely, it just feels good to fight back and regain some measure of control.

As someone who's often trying to find a the positives among ME/CFS' many negatives, I count this new sense of satisfaction as a significant offset.  Like most of the positives I find, it won't fully offset the negative, but it brings me partway back to whole.  If I were to assign a score to to it, I might say that the increased difficulty carries a score of -10 points, but the increased satisfaction gives +6 points back.  In the same way, I try to think of the other effects of ME/CFS on my life in terms of their net effect.  There's a tendency sometimes to only focus on the negative side of the balance sheet because it's often the most obvious.  I'm finding that with more time to reflect, the positives gradually materialize.  And when the positives and negatives are balanced out, the net effect of ME/CFS isn't as bad as I'd feared, say, 7 or 8 months ago.

A key caveat here is that, in trying to accomplish whatever I can with ME/CFS, I have to make sure I'm not hindering recovery.  There's no satisfaction in damaging my health, and admittedly, I'm still struggling to pinpoint where my crash threshhold is -- something I don't think I'll ever nail down perfectly.


Sunday, August 19, 2012

Hit by a new symptom: Costochondritis

What caused my unbearable chest pain?  Two theories:

Theory 1.  This is the onset of Fibromyalgia

Here are a couple of entries from the about the connection between costochondritis and FM.  (In the video, I mistakenly said they were from the New York Times blog).

Costochondritis in Fibromyalgia

Fibromyalgia & Costochondritis: Pain in the Chest & Ribs

This third article posits that the chest pain often seen in FMS patients is not costchondritis at all because it is not caused by inflammation, but rather by Myofascial Trigger Points (MTPs).

Theory 2.  Inflammation from Chronic Viral Infection in CFS

Typically, medical websites on Costochondritis say that it can be caused by two things: trauma and inflammation from chronic infection.  Trauma is ruled out for me -- I haven't done jack squat in a long time!  But to the extent that ME/CFS is sometimes suspected to have a chronic viral infection component due to weakened immune system, this may have caused inflammation.

Frankly, I'm not sure if these can really be considered two distinct theories, given the close connection between ME/CFS and FM.  I haven't yet bothered to research much about FM since pain was never a component of my ME/CFS until last Thursday.  Hopefully this is just a brief episode and I don't need to  learn more about FM.

Tuesday, August 14, 2012

ME proves unpredictable once again

I've been back from New York since Sunday and so crash.  How is it that a day trip to the beach can sometimes lead to a soul-crushing crash, yet this 6,000 mile cross-country trip seems not to have affected me at all?  Again ME is determined to run counter to my expectations.  Maybe I should start expecting the opposite of what I expect!

I also felt relatively well during the trip, which allowed me to truly enjoy the wedding and our free day in Manhattan, not just survive them.  Don't get me wrong, ME was right there with me the whole time, but it wasn't a dominant presence.  I still had to sit throughout most of the cocktail hour while everyone else stood and mingled.  And of course, I was one of the first ones to leave.  But the point is, I made it.  And I got to enjoy the speeches, the vows and connect with my extended family.  After my wife and I returned to the hotel, I fell asleep feeling grateful for having survived the night without a crash - something I would have taken for granted  14 months ago.

The day after the wedding, our "free day," I considered staying at the hotel and recharging my battery for the flight home the following day.  But then I figured, "who knows when I'll be back in New York.  I'll probably crash when I return home anyway, so I might as well go for it."

So I went for it.

I accompanied my wife and daughter to the Central Park Zoo, where we met with old friends and their new baby.  Of course, I had to sit frequently, sometimes slowing the group's pace, but I tried to compensate by adopting the role of event photographer for the day, which I could accomplish well enough from various benches and chairs.

That night, the wife, baby, and I decided to ventured out to a restaurant near our hotel.  I'd asked the concierge to direct us someplace casual, where a baby wouldn't disturb others.  He sent us to Dos Caminos, which turned out to be a Mexican dining experience as only New York can do it.  (The food was terrible, by the way.  I truly believe that most East Coasters have no idea what good Mexican food tastes like.)

But back to the restaurant experience:  I wasn't sure if we were in an eatery or a night club, but it was anything but casual.  The main dining room pulsed with the sounds of a live DJ spinning club music.  Most of the other patrons were dressed for a big night on the town.  Most appeared to be on dates.  And then there was us: the rag-tag Californians in flip-flops...with a baby...and an enormous a quasi night club.  I loved every minute of it.

It just felt good to be out in "the scene" cheesy as that sounds.  I discovered that New York's vibrancy can be absorbed passively, but enjoyed nonetheless.  I don't know how or why I somehow managed to avoid a crash this time, but I'm not going to over think it.  I'll just be thankful.

P.S.  I didn't end up wearing the nasal filters on the airplane because I'd forgotten them when I packed.  But after reading Baffled's comment to my last post, I'm glad.  It sounds like they would have been useless against viruses and bacteria.

Tuesday, August 7, 2012

Empire State of Mind

I survived the trip to Catalina Island for my grandfather's funeral.  In fact, my recovery from last Thursday's crash, before the trip, was unprecedented in its speed.  I'd never before risen 25% on my health rating scale from one day to the next, but it happened just in time to get me through that funeral and the rest of the two-day trip to Catalina.  

I've been told by other PWMEs that sometimes "adrenaline kicks in" to get one through an outing like this.  Frankly, I'd been skeptical of these claims because I couldn't understand what adrenaline has to do with viruses, methylation, and other issues associated with ME/CFS.  But I'm a little more open to that possibility now, especially since I immediately crashed back down after the trip.

As I mentioned in last Thursday's post, the Catalina trip was only one of two out-of-town family obligations I was scheduled to attend on back-to-back weekends.  The other is a wedding in New York, scheduled for this weekend.

Since returning home from Catalina and finding myself in a crash once again, I carefully considered whether to cancel the New York trip.  But in the end, I've decided to power through it as best I can.  This may seem like a reckless decision, but I think it's defensible.

I simply need to give this trip a try and see what happens.  As of now, I have no reference point for cross-country air travel.  Since becoming sick, I've only traveled on an airplane twice, and both were one-hour hops to San Francisco.  One of those trips caused a crash and the other didn't.  So I have no idea what will happen after two 5+ hour flights in four days.

If it causes a major crash, at least I'll have something to point to in the future when I need to make tough decisions.  At least my future decisions will be based on more than rank speculation.  Besides, if I skipped this trip without ever having tried it, I'd always be left wondering if I could have handled it.  So this will be an important litmus test.  I'm prepared to accept the consequences if it turns into a bad crash.

To reduce my odds of a crash, I plan to wear personal nasal filters like the ones linked here, which were recommended to me by a poster on HealKick.  The idea is to protect my weakened immune system from the germ-y airplane cabin air.  Except, my vanity won't allow me to walk around with the little bridge that connects the two filters hanging off the bottom of my nose.  So I've cut the bridge off with scissors, making the filters completely invisible once inserted.  Even so, the filters still contort the shape of my nose to the point where I don't look like myself, but at least I won't have people staring at this funny thing hanging off the bottom of my nose.

I have no idea if these filters will be effective, or if they're just a silly gimmick, but I'm willing to take a chance.

I leave on Thursday and return Sunday.  I'll try to update from New York if I can.  Wish me luck!

Thursday, August 2, 2012

Updated monthly average chart - July

My July monthly rating is in, so I'm updating my monthly average chart below.  I was surprised to see that July was my second best month of all.  Perhaps I am slowly improving.  It's so hard to tell.  

Month         Avg. Rating.     Notes             
Sept.          72.34                             
Oct.           77.16                  
Nov.           75.85               Started D-Ribose, Co-Q10, Acetyl-l carnitine, Vit. D3, and 
                                          vitamin powder
Dec.           80.39               Officially diagnosed; changed diet to low carb; added  
                                          ImmunoStim, NT 
                                          Factor, and pro-biotics
Jan.            79.07               Added T3 thyroid, pregnenolone, and magnesium
Feb.           72.73               Added methylation protocol; crashed twice due to low   
                                          potassium and flu
Mar.           77.94               Added Famvir (antiviral) and Nystatin (for Candida); briefly 
                                          tried LDN
Apr.            75.50      
May            82.03              Started Equilibrant, titrating from 2 - 4 tablets per day.
June           78.52              Upped Equilibrant dosage to 5 tab/day; got a cold early in   
                                         month; ImmunoStim ran out and is on back order.
July            81.12              Upped Equilibrant dosage to 6 tab/day, plus back on 

The Perfect S--t Storm

I lost my grandfather on Sunday--as in, he passed away.  It wasn't unexpected, as he'd been in bad shape for a while and we knew that he could pass at any time.  Still, as much as I thought I was prepared for it, it's a shock when it happens.  Preparation is one thing, but grieving is another, and I hadn't started the grieving process until he actually passed on.

I'm almost reluctant to dovetail this topic into a discussion of ME for fear of appearing to have my priorities misplaced.  But this blog is, after all, about ME, so I'll set aside my grief for a moment and talk about how it has affected my health.

It's a double-jeopardy situation.  First, there's the emotional stress.  More experienced PWMEs tell me that emotional stress can cause crashes.  This is my first go-around so I'll have to take their word for it.  It certainly hasn't helped.

Then there's the unplanned, last minute trip to the funeral.  Missing this funeral is simply not an option unless I, myself, am dead.

My grandfather happened to live on Santa Catalina Island, which lies about 26 miles off the California coast.  So that's where the funeral is.  This means we're making last minute ferry reservations and last minute hotel reservations. It also means travelling with an infant and probably 100 pounds of luggage, mostly baby equipment.  That trip begins tomorrow.  Sounds like a crash in the making, right?  As the late Billy Mays would say, "but wait, there's more!"

Yesterday I woke with a sore throat.  By late afternoon, it was clear that a pretty serious crash was building.  The body aches and heavy fatigue were setting in and my body temperature had dropped to 96.7, as happens sometimes when I crash.  By this morning, my nose was stuffed and it was clear that this crash would be among my worst.  I'm certain that this is a "sick on top of sick" situation, meaning I caught a virus that precipitated the crash.  

I'm in survival mode right now.  I just need to get through this weekend somehow.

Making matters worse is that we're supposed to travel across country next weekend for my cousin's wedding in New York.  We'll see how this crash progresses, but I may have to back out of that trip.  I just need to do whatever it takes to get back on my feet, so long as "whatever it takes" doesn't mean missing this funeral.