Flippy - I Rant, You Read
Saturday, March 14, 2009
early morning
Why some people can’t just exercise their problems away…
Following my rambly complaining is an italicized snippet from a new study on how exercise affects those with ME/CFS (CFS is often linked to FMS, and ME is what FMS is called overseas), and why they can exercise one day, but then don’t have the energy to keep going day after day. This, because I was told that I should be “exercising and not taking massive amounts of pain meds”. Because, as we all know, our families & friends are often much much more knowledgeable about our physical conditions than we are or our doctors are. This morning, I picked up a ton of poop in the yard (it was maybe four days’ worth) and while I was doing it, I felt kind of okay. It was nice outside and I like being able to do things. However, when I was done, I crashed for close to 18 hours, and all I have to show for my efforts is exhaustion and sciatica in both butt cheeks. Oh, and a clean yard. I feel like we owe our neighbors to do as much as we can to clean up the yard, not to mention, we don’t want Eli or Cricket to attempt to “clean up” the yard with their own grotesque methods.
Oh, and one more thing - I was told that I wouldn’t have had back surgery if I’d won MegaBucks, as if being rich would’ve made the bulging disk disappear, and that my herniated disk was something that was just a normal consequence of an athletic childhood and I could’ve worked through it, if I wasn’t so darned lazy. No, my sore knees from catching are a natural consequence of my childhood of sports. My knees bother me daily, but mostly it’s mild pain that I can ignore. Herniated disk pain is not only pain that you can’t ignore, it can cause permanent nerve damage if you wait too long to have surgery. My only regret about my back surgery is that I waited so long, trying more conservative treatments, while I was only getting worse and worse. The final catalyst that pushed me toward surgery was that I wasn’t just having pain & numbness in my left leg/foot, it started moving into my right foot. Leigh-Ann doesn’t drive, so my “driving foot” is our only link to the outside world, and having my right foot go numb (I’d already developed a limp from losing strength in my left leg, which is where most of my herniated disk symptoms manifested themselves - it started with excruciating pain across my left thigh, then moved down to my left calf, then to my left foot) was really scary. As soon as my right leg became involved, I scheduled the surgery. I should’ve had the surgery four months sooner, when my back surgeon suggested it, because the only thing that happened between December/January and April was that I had those stupidly expensive selective nerve root blocks that, at the very best, gave me a little bit of relief for a day or so. However, a friend of ours was able to avoid surgery because the nerve root blocks help her so much and for so long, so I figured I should give it a chance. Now, I know that since the first one wasn’t a miracle, there was no need for me to have the following two.
I do think it’s possible that if I was rich and didn’t have any financial worries, I might’ve been able avoid getting FMS. It’s thought to develop due to some sort of extreme stress on the body, and it could be either physical or emotional. The pain and surgery might’ve been enough to tip me over the edge, but maybe not if I hadn’t had to worry about the mortgage and medical bills and not being able to work. Regardless, I didn’t win MegaBucks, so it’s a moot point, all the stressors were there and these were the crapass cards I was dealt. The added stress of financial problems and people thinking I’m lying about being sick, only makes everything worse. So, living in the middle of nowhere (cheap nowhere) with just Leigh-Ann and the pets is very appealing. I’m pretty sick of being treated like I’ve made up my illness, that if I just got up and exercised and moved on with my life, I’d miraculously be cured. Yeah, some days I’m lucky to have enough energy to walk to the mailbox. Although, if I could get a job working from home (like the one I had for almost two years), that would relieve some of the financial stress and I know that would make me feel better. (employers, if you’re reading this, I can work fine from home, as long as I can work in the middle of the night, when I’m feeling my best)
In the “it would be funny if it wasn’t so sad” column - I’ve been accused of making up my FMS. I guess that Leigh-Ann’s pain and exhaustion looked like so much fun, that I decided to follow in her footsteps. It just took me 9 years to discover that that was my goal. Fibromyalgia is just like being gay - no one would choose either one, because of how other people treat you when they know. You’re either gross or a sinner for being gay and you’re a liar, lazy, or a drug seeker if you tell them you have FMS and take pain meds. Oooh boy, what fun!
Okay, here’s the snippet I promised you. If you have Fibromyalgia or Chronic Fatigue, you might want to go to the link I posted above, so you can read the whole study. For those of you who think that exercise is a magical cure for all of us, the snippet is enough.
A New Approach. The Pacific Fatigue Lab researchers realized, however, that while researchers may have been asking the right questions they were asking them in the wrong way. Many ME/CFS patients can, after all, get through a single ‘workout’ or a single day or single afternoon at work okay only to ‘crash’ afterwords. Until now, though, no one’s taken a close look at the ME/CFS patient’s ability to produce energy when they’re in a crash – an odd oversight in a disease whose symptoms are so tied to activity. (Indeed, study after study is showing that many variables which test out normal or near normal when ME/CFS patients are at rest are abnormal when their systems are put under stress). With the Pacific Fatigue Lab doing a new exercise testing regime, two exercise tests two days in a row and other tests (now known as the Stevens’ Protocol) they’ve given the post-exertional problems ME/CFS patients have reported for so many years a chance to show up – and they have. Their results are both profound and disturbing. About half of the ME/CFS patients they’ve tested do, in fact, ‘fail’ or significantly under perform in the first single exercise test – they cannot generate normal amounts of energy even when they’re ‘rested’. It’s the rest of the patients that are so intriguing, though. When you give these patients a second test a day later many of them will fail as well—and fail spectacularly. The amount of impairment the Lab see’s can be astonishing - some patients suffer as much as a 50% drop in their ability to produce energy the next day. Ms. Stevens spoke of a twenty-something man whose next day exercise tests were worse that those of a normal 85 year old. In a hospital setting his cardiopulmonary exercise profile would suggest he had heart failure. Revolutionary Findings - According to modern medical science this shouldn’t occur. For decades researchers have shown that human beings, under virtually all conditions and in a variety of disease states, can take an exercise test to exhaustion, recover and return the next day and score the same the next day. It doesn’t matter if she/he has heart failure or end-stage kidney disease – again and again researchers have shown that the human body – even in extremely poor health - has an amazing ability to quickly return to a baseline level of energy. That is until now. But it’s not just that chronic fatigue syndrome (ME/CFS) patients are failing these tests, it’s also the unique way they’re failing them that’s raising eyebrows. Decades of research have shown if you a take a female of W age and have her do X amount of exercise at Y heart rate she will exhibit Z levels of oxygen consumption. Researchers have believed these algorithms are set in stone but they’re not holding up in chronic fatigue syndrome (ME/CFS) patients. That they’re not suggests that something has gone awry in the basic physiological processes the body uses to produce energy in this disease.
