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, January 13, 2016

I now know what's causing my shortness of breath

I've been writing recently about my efforts to figure out what's causing my debilitating air hunger, which is always accompanied by post nasal drip (PND).  (Here and here.)  It comes and goes, but over the last two months or so, I've noticed that it has become more permanent.  I no longer get any days off -- it is there every day.  Now its only a question of severity.

I know now what's causing it: inflammatory cytokines.  I'm reasonably certain of that.

The pulmonologist found no problems with my lungs or heart.  I'm still pending an allergy evaluation (next week), but I doubt that will find anything.

Here's what I know:

Things that make it worse:

Exertion - Even walking now seems to trigger it.  A flight of stairs: definitely.

Coffee and other stimulants - The strange thing is, even decaffeinated coffee triggers it.  I believe that even the small amount of caffeine in decaf coffee is sufficient to make it worse.  Much worse actually.

My car - This is the one that doesn't quite fit with the others.  My first thought was, maybe I'm reacting to something in my car, particularly in the ventilation system.  Other times I've thought, maybe it's simply because every time I'm in my car, my presence there was preceded by exertion: gathering my things and walking to the car.  But I don't think that's the explanation.

Things that make it better:  

Nothing, except avoiding the things that make it worse.  I've tried Monolukast, inhalers, tea, mold and chemical avoidance, diet, anti-inflammatory drugs, Azelastine, and Flonase.  None of that makes a difference.


My conclusion is: This has to be inflammation triggered by cytokines.  We've ruled out nearly everything else.  Exertion and stimulants are two factors known to trigger an inflammatory response in people with ME/CFS. The car as a trigger is less easy to explain, but I feel there may be an environmental trigger to the inflammation as well.

I've been ill with ME/CFS for 4.5 years, generally the time frame when, as studies have shown, a person's cytokine profile changes.

Shortness of breath was a major symptom of my acute phase in 2011, but then it went away for the most part, for the next 3 years.  During that time, it was only sporadic, fairly rare, and not too severe when it did come.  It was not accompanied by PND like now.  I enjoyed a higher than average exertion tolerance compared to some other patients during that period.  Basically, I was able to do most day-to-day activities without fear of triggering a major crash.  (I dealt with a host of other problems, but hair-trigger SOB wasn't one of them.)  I wasn't like a normal person who could go running or play basketball, but I could climb a flight of stairs and feel OK generally.  That may be changing now.

Some people say that SOB in ME/CFS is not a matter of lung function or blood oxygen levels (my blood oxygen levels are fine) but rather the body's inability to use the oxygen efficiently.  I don't think that's the problem in my case because the SOB always gets better and worse in lock step with PND.  It makes more sense to me that inflammatory cytokines would be causing lung inflammation and at the same time, causing my sinuses to produce mucous.  The inefficient use of oxygen theory doesn't explain the PND.


  1. I think you're probably on the right track. My guess is specifically something like histamine, which could cause bronchoconstriction and sinus congestion. I think in longer term patients the type of inflammation is more in line with what is released by granulocytes like mast cells and eosinophils. This seems to be upregulated while inflammatory th1 cytokines seem to be downregulated.

    For what it's worth my shortness of breath increases quite a bit while in the car. My heart rate also increases. The only thing that has improved my shortness of breath is Epivir.

    1. Very interesting Weyland. Do you have any idea why your SOB increases in the car? I cant make much sense of it.

  2. A reader emailed me with some interesting information that I'd like to pass along (with permission): "have you ever had the 2 day CPET done? This will show that there is a "metabolic impairment". It will objectively show that we have difficulty with oxygen consumption. This basically means we have cellular hypoxia (lack of oxygen) so our organs, tissues, and cells are not getting enough oxygen. Our blood is oxygenated.....but something metabolically is causing dysfunction to cells, organs, tissues.

    Thus why physical or mental energy demands are not being met.....our bodies are unable to produce "aerobic" energy like a normal, healthy person. Our "aerobic system" is basically broken! It is oxygen deprivation to our bodies."

  3. Has anyone mentioned the possibility of mold toxic exposure? That was a huge element of my CFS, once we realized we had leaking pipes and a 7 month remediation later, my tachycardia, air hunger, and palpitations decreased significantly. Digestion improved, sleep improved. I am not out of the woods yet but that was a major factor. Something to include in the analysis anyway.