I went to the Fatigue Lab at the University of the Pacific to have my PEM measured to help support my disability appeal. I'm hopeful now, the first time in a long time. Here is the journal of my visit if anyone is interested in taking the same approach.
Pacific Fatigue Lab trip
Fri
Flew out of Vancouver early in the morning, and arrived in Stockton, Cal around 1pm. I layed around in the hotel resting up for Mon. I'm excited.
Sat
I slept about 11 hours- quite a few awakenings, but only for a few minutes at a time. I thought maybe I got away with yesterday and the sleep was enuf, but by 11 am both my thighs have charlie horses that won't ease up and I'm too tired.
Sun
Yesterday was brutal. Turns out the room service is discontinued, but luckily I bought some fruit at the station because by late in the day I could hardly stand up, let alone go out for dinner. My toilet had a leak and they had to change my room. My brain wouldn't work, I couldn't figure out how to use the room key even tho I've done it hundreds of times. A housekeeper came by and let me in. I burst into tears and she took care of the move for me while I sniveled.
Awake many times in the night. Today I'm not as sore as I was, hopefully I'm getting over the hump.
Mon
1st day of testing.I was asked if I minded an audience, which of course I didn't, so an internist and an exercise physiology grad student observed. They did a reaction time test, then measured my lung and even nostril capacities. I was hooked up to an ECG and had a mask put on my face to measure the oxygen and CO2 output. A thermometer went on a finger and a blood pressure cuff on an arm. Finally I went on the exercise bike. I pedalled until there was nothing left in me, while the team monitored the various readings.They then assisted a very wobbly me to lay down and monitored me until I recovered.
I returned to the hotel with an appt to return the next day for repeat testing. As was my usual, I actually didn't feel too bad the next morning, and was nervous that the tests wouldn't show anything. It is standard for me to crash 2 days after exertion. I didn't need to worry.
Tues
I was hooked up to all the same paraphenalia, went back on the exercise bike and again pedalled madly until I couldn't continue while they monitored me. At one point Dr Stevens pointed at the monitor and said "It's here" and the 2 observers seemed quite enthralled by what they were seeing. At the end they again measured my nostrils and had me do the same reaction time tests that preceded the tests the day before. Meanwhile, the 2 doctors excused themselves to run some preliminary results. Other than that one statement it seemed to me like I performed about the same both days.
Preliminary Results
Dr Stevens said my results were like an "early Christmas present" for her, and everyone seemed very interested, as the results go against conventional wisdom. As I understand it, there is a certain point in exercise where you move from aerobic to anaerobic work. They can measure that based on some formula and the measures of breath. This is an accepted, objective measure. In normal people and in every other disease they have tested, this set point remains pretty much the same one day to the next or improves as people get more fit. A 7% change is considered the outside parameter.
In my case my first test had me within normal limits for a sedentary person. The second day there was a 32% change, meaning I was burning energy with much less exertion than the day before. She said they would predict it would be even less the next day based on my experiences. They will write a report saying I cannot work because altho I can rise to an occasion, I cannot sustain exertion, and apparently they write the report based on calories used in a days work, my weight, age, etc.
Another measure they did was CO2, which is related to lactic acid production, an acid released when muscles are being overworked or damaged. They use this measure to monitor the training in elite athletes. Apparently I give off a lot of CO2 even at rest, which I presume is related to my cramping legs. Dr Stevens told me their measures indicate I actually have a very high pain tolerance, which was so validating to hear when I feel like I spend all my time winging and complaining.
I am to wear a heart monitor and avoid a heart rate of more than 113, as that is the point where I start doing muscle damage. I need to use only aerobic energy, never anaerobic.
The cost of the testing was $2000. At this point I am awaiting my final appeal with my insurance company before I have to go the court route. I think this was the best money I could have spent. It doesn't treat my illness, but it does prove it is real, and the testing is rigorous, with accepted tests that are commonly used for disability claims, but they are simply repeated to show a more complete picture. The outputs are objectively measured, so LTD can't claim I just didn't try or manipulated the results.
Hope this helps explain for anyone who is considering this route
Pacific Fatigue Lab trip
Fri
Flew out of Vancouver early in the morning, and arrived in Stockton, Cal around 1pm. I layed around in the hotel resting up for Mon. I'm excited.
Sat
I slept about 11 hours- quite a few awakenings, but only for a few minutes at a time. I thought maybe I got away with yesterday and the sleep was enuf, but by 11 am both my thighs have charlie horses that won't ease up and I'm too tired.
Sun
Yesterday was brutal. Turns out the room service is discontinued, but luckily I bought some fruit at the station because by late in the day I could hardly stand up, let alone go out for dinner. My toilet had a leak and they had to change my room. My brain wouldn't work, I couldn't figure out how to use the room key even tho I've done it hundreds of times. A housekeeper came by and let me in. I burst into tears and she took care of the move for me while I sniveled.
Awake many times in the night. Today I'm not as sore as I was, hopefully I'm getting over the hump.
Mon
1st day of testing.I was asked if I minded an audience, which of course I didn't, so an internist and an exercise physiology grad student observed. They did a reaction time test, then measured my lung and even nostril capacities. I was hooked up to an ECG and had a mask put on my face to measure the oxygen and CO2 output. A thermometer went on a finger and a blood pressure cuff on an arm. Finally I went on the exercise bike. I pedalled until there was nothing left in me, while the team monitored the various readings.They then assisted a very wobbly me to lay down and monitored me until I recovered.
I returned to the hotel with an appt to return the next day for repeat testing. As was my usual, I actually didn't feel too bad the next morning, and was nervous that the tests wouldn't show anything. It is standard for me to crash 2 days after exertion. I didn't need to worry.
Tues
I was hooked up to all the same paraphenalia, went back on the exercise bike and again pedalled madly until I couldn't continue while they monitored me. At one point Dr Stevens pointed at the monitor and said "It's here" and the 2 observers seemed quite enthralled by what they were seeing. At the end they again measured my nostrils and had me do the same reaction time tests that preceded the tests the day before. Meanwhile, the 2 doctors excused themselves to run some preliminary results. Other than that one statement it seemed to me like I performed about the same both days.
Preliminary Results
Dr Stevens said my results were like an "early Christmas present" for her, and everyone seemed very interested, as the results go against conventional wisdom. As I understand it, there is a certain point in exercise where you move from aerobic to anaerobic work. They can measure that based on some formula and the measures of breath. This is an accepted, objective measure. In normal people and in every other disease they have tested, this set point remains pretty much the same one day to the next or improves as people get more fit. A 7% change is considered the outside parameter.
In my case my first test had me within normal limits for a sedentary person. The second day there was a 32% change, meaning I was burning energy with much less exertion than the day before. She said they would predict it would be even less the next day based on my experiences. They will write a report saying I cannot work because altho I can rise to an occasion, I cannot sustain exertion, and apparently they write the report based on calories used in a days work, my weight, age, etc.
Another measure they did was CO2, which is related to lactic acid production, an acid released when muscles are being overworked or damaged. They use this measure to monitor the training in elite athletes. Apparently I give off a lot of CO2 even at rest, which I presume is related to my cramping legs. Dr Stevens told me their measures indicate I actually have a very high pain tolerance, which was so validating to hear when I feel like I spend all my time winging and complaining.
I am to wear a heart monitor and avoid a heart rate of more than 113, as that is the point where I start doing muscle damage. I need to use only aerobic energy, never anaerobic.
The cost of the testing was $2000. At this point I am awaiting my final appeal with my insurance company before I have to go the court route. I think this was the best money I could have spent. It doesn't treat my illness, but it does prove it is real, and the testing is rigorous, with accepted tests that are commonly used for disability claims, but they are simply repeated to show a more complete picture. The outputs are objectively measured, so LTD can't claim I just didn't try or manipulated the results.
Hope this helps explain for anyone who is considering this route
