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, May 29, 2013

Six types of ME/CFS crashes

Part of the reason that it is so incredibly difficult to control and predict ME/CFS crashes is that there are at least six different types of crashesprobably moreeach with it's own cause.

A Little Background

About a year ago, I began an ambitious and naive effort to solve the mystery of my crashes.  I added three new columns to my daily health chart, one for "Activity level," one for "stress level," and one which assigned a binary numerical value (1 or 0) to whether or not the day was a work day.  In addition, I was already keeping track of my daily health rating and my "big three symptoms": flu, shortness of breath, and flank pain.  

The plan was this: after a year of tracking all three of these potential causes, I would use the spreadsheet's automatic graphing feature to create graphs showing the relationships between those three potential causes and my daily health rating (the effect).  This would, in theory, show me what caused crashes, what my crash threshold is, and any lag time between cause and crash.  

Well, after 8 months of tracking the three potential causes (ending in January), I figured I had enough data and made the graphs.  What did I find?  Nothing.  Absolutely no patterns emerged whatsoever.  Usually if you're really looking for a pattern, you can find one, even if there's no actual cause/effect relationship.  But the data defied all attempts to make sense of it.  Sometimes a particularly "active" day would be followed by a crash, but other times, not.  The same went for a particularly stressful day or a work day.

I came away from this experiment resigned to the fact that crashes (and their causes) are simply too complicated to hope to gain much, if any, control over.  Since then I've spent more time thinking about why my experiment failed, and I've come to believe that it's because there are too many different types of crashes.  As an example, the six that are most prominent in my life are:

The Dirty Half-Dozen

1.  Post Exertional Malaise:  This is the kind of crash that seems to get the most ink on ME/CFS forums and blogs.  It's where the patient surpasses his/her anaerobic threshold (AT) for too long or too often in a given day.  The crash sets in 2 to 3 days later as the body attempts to clear out the excess oxidization created by crossing the AT.  It feels exactly like the name suggests - utter and complete malaise of a type that only a PWME can understand.  Then your AT becomes even lower.  Suddenly your heart rate spikes with even the mildest of efforts.  People sometimes try to avoid these crashes by wearing a heart rate monitor.

2.  PEM - the other kind:  Crashing doesn't always require crossing one's AT, does it?  I wish it were that simple.  For those of us who are lucky enough to be able to stand and walk without surpassing our AT, we know that even if we stay under our AT and don't do anything that raises our heart rate too much, we can still crash from simply standing too long, or walking too long.  For those with bad POTS symptoms, even sitting upright for too long will do it.  And for others, mental strain will do it as well.  The feeling of this type of crash is similar to the first type of PEM - utter malaise.

3.  Bugs:  We encounter a whole slew of viruses and bacteria every single day.  People with healthy immune systems fight off the vast majority of these invaders before the person ever feels the slightest symptom.  For us, it's different.  In the bodies of PWMEs, otherwise weak pathogens find a place where they can hang out for a while and spar with our weak T-cells and B-cells.  I don't know if it's the pathogens themselves or the immune system's reaction that makes us feel so awful, but I recognize this type of crash by its symptoms.  These crashes come with sniffles and coughs, sore throats, respiratory issues and other traditional cough and cold symptoms.  

4.  Herx.  Ah, the mysterious and possibly mythical Herxheimer reaction, also known as the "die off" effect.  Supposedly this means that whatever medicine or supplement regimen you embarked on is working.  The problem is, few if any can really distinguish between a Herx reaction and a plain ol' bad reaction.  Some say they can tell the difference, but there's no consensus on exactly what that feels like.  The only thing I know for sure about Herx is that, if you're feeling blue about a crash, you can often convince yourself that it is actually a good sign.  This is almost never the case, but it feels good to think it anyway.

5.   Adverse reaction:  Different from Herx, this is when you simply didn't react well to a new treatment.  This can feel like anything, it just depends on the treatment and your body chemistry.  Maybe you added a new supplement that started a reaction which stripped your body of another critical nutrient.  If you're lucky, you can trace it back to a supplement you started the day before.  But sometimes it can take months for your body's reserves of a particular nutrient to be depleted, and good luck tracing that back to its origin.  I hope you like pouring through 86 page threads on Phoenix Rising, looking for a few nuggets of scientific truth among mountains of speculation.  About half the new treatments I try end this way.  For some people I know, it's more like 100%.   

6.  New symptom:  Sometimes a new symptom just hits you out of the clear blue sky.  You have no idea where it came from or why it chose that particular day to reveal itself.  You know it's somehow related to ME/CFS because you never suffered such random attacks before ME/CFS. But you don't have the faintest clue how it fits into 'the big scheme of things.'  You figure you won't even bother telling your doctor about this one because she won't have the faintest clue either.  Sometimes it goes away in a few days, as mysteriously as it appeared.  Sometimes it becomes a new recurring symptom and now it's not a crash anymore.  Congratulations, it's your new baseline.  

I'm sure that there are other types of crashes that I am forgetting, or that I haven't experienced...yet.  I know others have spoken about stressful life events leading to crashes.  I can't speak to that yet, but some day I just might.  Hopefully not.

My Conclusion

Of these six types of crashes, the only one that I feel I have the slightest modicum of control over is the first one: traditional post exertional malaise.  To a lesser extent, I may have some control over 2 and 5, but I'm unwilling to stop tinkering with treatments and I'm not going to shut down all activity unless/until I ever get to the point where I'm housebound.

I'm usually pretty good at managing my lifestyle and avoiding PEM crashes, yet I still crash all the time.  It's because there are still 5 other types of crashes waiting to come up on the ME/CFS wheel of fortune.  For me, number 3 ("Bugs") is by far the most common type of crash I experience.  So, like most of us, I do the best I can to minimize my chances of crashing while still accepting that most crashes are beyond my control.  And somewhere in the margin are a handful of #1 & #2 crashes to whom I say: bring it on.  It's worth it. 


  1. Have you tried using a Fitbit? This records every step you take... (every move you make ;-) ) and gives a much more accurate record of your daily exertion than anything else I've found.

    It also graphs everything on line and gives you an indication of how long you have spent each day being: inactive, lightly active, fairly active and very active. I aim to have zero very active, and less than 20mins fairly active daily. This is MUCH easier than using a HR monitor which is uncomfortable and my HR is too erratic to see what's happening anyway.

    Using the fitbit I have reduced my flares substantially and am finding it much easier to keep clear headed. However, I need to stick to a very low stepcount, and I use a mobility scooter when leaving the house. Check out - it's designed for folk who are trying to increase their workouts - but works equally well for us. There is even a group on there of folk using it for ME/CFS and it has about 25 members.

    I agree about the other triggers, some are easy to see like an infection or a big emotional meeting (loosing my job to my illhealth was one) but for me the major dilemma is keeping my activities low enough. PEM can be triggered either by a big day OR a series of days where I do just a tiny bit more than normal... this might not be detectable without the fitbit.

    Anyway - I enjoy reading your thoughts... hope mine have helped you. :)

    PS I wrote a little about ME on my blog and have started another about trying to do my sport of dog agility from a mobility scooter: Happy for other meeps to check them out!

    1. Thanks for sharing your experiences fitbit and crashes in general. So fitbit is a watch or something you clip to your belt?

      I know for other people the PEM type of crash is much more of an issue than it is for me. I don't know why that is. I guess we all have different triggers?

    2. Mine clips onto clothing or I put it in my jeans pocket. There is a new one out that is worn like a watch. It does seem that each of us suffers this illness in our own unique way.... ;-)

  2. Brilliant Patrick. I was just thinking yesterday how in the past 2.75 years in dealing with this, how other health issues have affected me that previously were never present. I seem to get stomach issues every so often, like I am sensitive to some foods now. Bloating to be exact, and the discomfort that brings. Obviously our body's system to regulate what was normal activity is comprimised. Say, have you ever thought more about Vyvanse at all? I take 30 mg of this 4-5x/week (5 months now) and I put that in the list of "things that work" for me. This is considered a small dose, but it does give me some energy (not a hyped-up energy, just subtle) and clears me head (which I greatly need at my job). But overall, when crashed hit you out of the blue, it does to show you that something other than ourselves is in control, and that can be really disconcerting.

    1. Hi Bret. I have not heard of Vyvanse other then when you mentioned it in another comment - not even sure what type of drug it is. I will look into it and ask my doctor about it next time I see him. Thanks for that tip.

      It's odd how these other seemingly unrelated symptoms start popping up after you get ME/CFS, isn't it? I've heard people opine that it's a function of the theorized auto-immune aspect of ME/CFS; that the overactive side of our immune system begins attacking healthy tissue - in your case in the gut. That's one theory anyway. Who knows?

      Good to hear from you. -Patrick

    2. Happy Friday Patrick. Vyvanse is the latest drug meant to treat add/adhd, and has an off lable use in CFS. Cort johnson's site has an article about a trial performed, and the positive results acheived. Again, this just treats symptoms, but lessening those can feel like some of th burden if off you. I just like the subtle energy boost versus something that feels too stimulating. In regard to testosterone, my doc thought anything over 700 would start to cause atrophy of the male glands down you-know-where, and could start changing ones personality to being a bit more aggressive. So far I have not noticed (or had anyone else comment to me)any change in my personality.....but if I need one I know where to turn!

    3. Atrophy of the WHAT?! There's no way I'm going above 700 then! Man, it's a good thing I talked to you. lol. If I ever punch a hole in the drywall just because my shoe came untied, I'll know to dial back the T a bit.

      Happy Friday to you too, sir. Thanks for the further information about Vyvanse. Now I am very intrigued...gonna have to check that out.

  3. Patrick-Happy Monday, I hope you are well. Say, just looking for some advice on the mental side of all this. I had one of those moments this morning that really put me in the dumps mentally, and reminded me of the limitations I now have. Talked to one of my co workers earlier, who was complaining on how tired she was because of her 40 mile bike ride yesterday. She is training for a triathlon. I don't know her all that well, so she has no idea of my health issue. She asked if I do many long rides on the bike, which put me in an awkward position.....what do I say? Do I say, I used to but can't now due to a health issue, and open that topic up? Or, lie and say I still do this and leave it at that? I just made more small talk, but just that short conversation reminded me of the loss in lifestyle this brings. I hope someday I can rejoin that lifestyle, but not now. And that really hurts sometimes, like this morning.

    1. Hi Brett, sorry to hear about that. It's a good question and one that I struggle with too. For me, I haven't come up with a rule as to who I talk to about my new limitation and how much detail I go into. I tend to decided on a case-by-case basis, depending on how well I know that person and how much I think they might actually *want* to know. And how much I feel like talking about it at when the situation arises. And what's the context: do we have time to talk? Are there others around who might overhear or interrupt?

      For most of my coworkers, I really don't think they want to know, so I usually don't go into much detail. Most often, when someone asks me if I've been surfing lately, I'll simply say that I haven't due to "health limitations," or due to "doctor's instructions." I leave it vague. That way if the person wants to ask follow up questions, they can. About half of people will ask, and the other half won't. Among those who don't ask, there are probably some who simply don't care, but in most cases, I believe they assume that if I had wanted to get more specific I would have.

      Sometimes when a person does ask follow up questions, it's actually *me* who doesn't feel like going into it. In that case, I have said "I'd rather not go into it." So I guess I'm all over the place in terms of how I handle that issue - no consistency. Just depends on my mood at the time and how I feel about the other person.

      I've been meaning to ask you a question about T shots. I do the shots in the front of my thigh - the quadricep muscle. A day later, I usually get a knot in the area of the muscle that's uncomfortable and borderline painful when something presses against it. Where do you inject? Do you get those knots, and if so, have you figured out a way to avoid them? I almost wonder if I'm doing the injections wrong. (Yes, I do push out any air bubbles prior to injection.)

  4. Thanks for the advice Patrick, it is situation-specific I know. I keep the dialogue on my ever changing health state to my inner circle, probably 5-6 people including my wife of course. I try not to have the topic dominate the at home conversations too much, only when I need to vent a bit to my understanding wife. To go through this solo would be much tougher. I inject in the belly fat, switching sides each injection. I do feel a bit of a hard spot where I ject, but it is located in an area where it doesn't cause much discomfort. You thigh obviously is an area where you are always using it when you walk. Curious why the thigh versus the belly fat. Let me know...

    1. I'm the same - probably only about 5 or 6 people who know what's truly going on with me and my health. It's hard because once you tell someone outside of your circle, you really don't know what they are going to say to other people or how it's going to get misconstrued as it gets relayed. I try to avoid that, but in some sense, it's inevitable. I have already seen the results of people's misconceptions relayed back to me several times.

      Thanks for the information about injection site. I'm going to ask my doc about belly fat.

  5. My crashes are becoming fewer and further in-between, and I'm recovering faster as well (though writing this will jinx me for sure). I just wrote a blog post this, and it basically boils down to focusing on natural, nutrient dense foods, no junk food or refined sugar, relaxation, and my go-to treatment for everything (or so it seems) - Castor Oil.