How Getting a CPET Was the Best/Worst Thing I Ever Did

30688983_1601075223281408_3446540216557371392_oThe CPET is a test used by some people to document Myalgic Encephalomyelitis and Chronic Fatigue Syndrome while applying for disability. If you’d like to learn more about these tests, how they work, where to find them, and why people take them, take a look here: How to Get a CPET (maybe)

Some people love the CPET and are so glad they got this test. Other people have regrets. If you are thinking of getting a CPET, here’s some stories from the (battle)field.

HOW WAS YOUR CPET? 

💮 “I did the 2-day CPET and was approved for disability soon afterwards. I had a three-week recovery period. It was definitely worth it for me.”

💮 “I sustained permanent, severe damage after the two-day CPET test. The results helped me win back my employer-sponsored disability benefits but… destroyed my health and life. I had no information about the true dangers or what to do to protect myself afterwards. Total disaster.”

💮 “I did the 2-day test. That was just under 2 years ago and I’m still not recovered from it.”

💮 “I did the two-day CPET, and have had a permanent loss of function. It wasn’t immediately apparent after the test, but it became apparent as I tried to do things I used to be able to do. Now I am housebound and mostly bedbound.”

💮 “I did the two-day CPET. The information I got is very valuable — especially for showing my regular doctors who don’t understand this disease. BUT, I crashed pretty bad after the test and it took a long time to recover. I wish there was a better way.”

💮 “The 2-day CPET helped me win my disability case, but doing the test put me in such a horrible relapse it took over 3 months to get back to baseline. It really sucked.”

Jenni’s Story

“It was absolutely worth the risk to have the testing done. I did eventually return to baseline, and the information on my anaerobic threshold is helping me with the difficult process of pacing.

“I also have the report in the event that I need it for disability purposes. I thought it was definitely worth the expense, the risk, and the long recovery process.”

Jennie Spotila has an excellent long article describing how she took the test and how she has used the results.

Iris’ Story

“Of all the tests I took while applying for disability, the 2-day CPET was the worst. It caused me to lose about 10% of function.

“That was several years ago and I am still not better. I had a huge loss of function that became apparent in the month following the test. I survived only with major support from my family who took over all the cooking and were able to care for me while I was bedbound.

“The CPET report is very good, and the team there was amazing — very compassionate and helpful.

Iris Gets a CPET

Colleen’s Story

“I took the 2 day CPET. It definitely affected my overall health so I am not recommending it unless it’s needed to improve likelihood of long term financial support. It has been helpful for me in getting more respect from doctors.

“I’ve been sick 28 years… but still struggle with getting doctors to do anything more than send me home to fend for myself. This gave me what I needed to get cardiologist to address my high heart rate. Dr. Keller was excellent and their staff really knew what they were doing.

“My insurance also covered part of the cost of the test but I didn’t know that going in – had to submit for reimbursement.”

– Colleen Steckel

Caroline’s Story

“Ultimately, it is a very personal choice for an ME/CFS patient to either choose or forgo a 2-day CPET for disability purposes.

“Many patients report permanent losses to health following a CPET, yet many more appear to recover eventually, with 50% of Workwell patients recovering within 1 week.

“It is hard to predict who will recover and who will not. Just like with any treatment advice, we are all different and ultimately cannot predict how our bodies will respond to an extreme stressor like the CPET.”

–  Caroline Christian: Decoding the 2-Day CPET

Dahlia’s Story

“The CPET from Workwell Foundation was incredibly helpful. They made me wear a heart rate monitor 24/7 for a month and it would alarm if it went over my aerobic threshold. This was very very useful. It taught me also to identify the signs that I was approaching that threshold so I could identify on my own when not wearing the heart rate monitor.

“The downside is that this test can cause a serious crash. This last time I went to take another CPET, I was in such bad shape that my doc advised me not to do it. He was worried I’d lose ground permanently. I did not want to risk losing my disability (employer disability), so I did it. It did help with disability benefits, but I really struggled to recover.”

Dahlia Gets a CPET

Marigold’s Story

“My condition had been low-moderate for 15 years before doing the 2-day CPET. The test didn’t seem too bad at the time. I was in a bit of a low-grade adrenaline rush to be able to do it. But it caused a relapse.

“I also had a few events in the preceding year (bungled operations, and the added effect of general anaesthetic which I don’t react well to, and a move). These may have led to me not recovering from the test as well as I might have otherwise.

“It’s now over two years later, I haven’t recovered to pre-CPET health, and I am still at the high end of severe.”

More CPET Stories

💮 “I did the 2-day test. It was very valuable for obtaining proof of my level of disability and I was able to win my appeal for Long Term Disability. It was extremely hard on my body and the crash was awful, needing 2 nights of IV hydration to make any progress and I have never returned to my level of functioning that I had before the test. If you can get benefits without it, I would consider that route first.”

💮 “I was not applying for disability. I did the 2-day CPET just to get more info about my health. The staff were extremely knowledgeable and I did find out some useful information. My condition was not severe, so I think I handled the test, but it did make my symptoms worse for about four months. It was miserable. If I had to do it again, I would look for other ways to learn about my health.”

Learn More

How to Get a CPET (maybe)

How Exercise Can Affect People with ME and CFS


Updated January 2019. Please comment below with stories, questions, input or ideas. Please let us know if any links on this page stop working. If you found this page helpful, please use one of these magic buttons to share this post on Facebook or Twitter:

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