Travel and ME/CFS

[Guest guest]

Dear Peggy

I have been wondering pretty much the same thing lately. From my own

experience of being sick almost 25 years I am well aware that if I overdo it

even slightly I will suffer for 7-10 days or longer, even a month or more.

If circumstances beyond my control force me to exceed my physical

limitations significantly I have lost permanent function ability - more than

once and never regained it. Now, I'm down near the bottom 10% of functional

ability - basically only getting out of bed to go to the bathroom once or

twice a day, and only cooking/eating something halfway decent every 2-3 days

or so... I'm lucky if I take a shower or bath every 7-10 days, sometimes

longer.

Trips to see docs out of state usually see me end up in the ER at least once

per trip for IV Solu-Medrol for acute episodes of adrenal failure that I

can't control w/oral steroids.

So, I too have been wondering what *breaks* when we overdo it and then can't

get back to our previous level of function.

Kendra

On Wed, Apr 28, 2010 at 3:32 PM, <Peggomatic@...> wrote:

> I know this is slightly off-topic, but perhaps not in the way I'm asking

> it. Many ME/CFS patients can't travel, and I have always had a difficult

> time explaining to people -- including other ME/CFS patients who *can*

> travel -- why this is so. For me, it has been purely experiential: when I

> first got sick, I began crashing for longer and longer periods of time from

> any trip by car, train, plane, you name it. It didn't matter who was

> driving, how well I blocked out noise or other stimulation, what medication

> or supplements I took, if I was lying down the whole time using supplemental

> oxygen, etc., the crashes became more catastrophic and irreversible.

> However, explaining the physiology of this has been difficult.

>

> In one interview, Hillenbrand talks about crashing for more than a

> decade from a simple road trip. To my knowledge, she never recovered.

>

> But what is the physiology of this, and why *can* some patients travel?

> That's the part that baffles me, why some patients seem to not crash

> *permanently* from attempts to see ME/CFS experts or even travel out of

> country to get treatments, etc. I have seen it explained in terms of

> hypovolemia, but I don't think that's the whole story.

>

> The infectious disease specialist who diagnosed me with ME/CFS seemed well

> aware of all of this, before I was. That was in the early years when I could

> travel without inducing permanent disability. About five or six months after

> traveling (travel was incredibly difficult then, but I did it), I saw her in

> her office, and said I didn't know why I was so much sicker. She calmly

> stated " you're still crashing from your trip many months ago. "

>

> From Dr. Myhill's mito testing and the metabolic analysis profile (MAP)

> test, I know I'm extremely mito-impaired. But again, I'm not sure that

> captures the picture of what travel does to me or to others with ME/CFS who

> can't travel.

>

> In my experience there are two groups of patients: those who crash but know

> their crashes won't result in additional permanent disability, and those who

> know additional permanent disability is the norm for pushing much out of

> bounds at all. But what physically separates us, as some in the former group

> are very sick?

>

> Peggy

>