Three weeks ago, I had my exercise stress tests. A friend had cautioned me that it could take three weeks to recover, and I think she was right although I did sabotage myself a little bit, as I’ll explain.

I was not prepared for how bad the post-test crash would be. I mean, I knew it would be bad but this was possibly the most intense crash I have ever had. I was completely bedridden for three days, and was unable to sit up longer than the time it took to eat (in bed). The pain was excruciating, especially in my legs. My brain was fuzzy, and I could not focus on anything. But it was the weakness that really shocked me. I felt like a Raggedy Ann doll, my limbs all floppy. When I stood, I felt like I should sit right back down. My arms tingled with that weird pins-and-needles feeling I get before I pass out, although I did not faint. I could not hold my head up for very long without support. To get to the bathroom, I had to resort to my old castigation mind-trick: “You are not paralyzed. There is nothing wrong with your muscles. You can’t wet the bed like an invalid. Get off your a** and walk to the bathroom.” (It occurs to me that I would never speak to a sick person this way, but that self-reflection probably merits its own post.)

I’ve had a day or two of crashing as severe as this many times over the last 17 years. But this crash went on for days. I’ve never gone as long as a week with that floppy spaghetti-noodle weakness in my limbs. I started to get a little scared. What if the exercise test broke something in me? What if this never got better? Both my friend and Dr. Betsy Keller had said that some patients benefited from IV fluids after the exercise tests. I’ve never tried it before now, but after five days I was feeling desperate to try anything to break the pattern. My doctor agreed, and I went to his office for the infusion. Another first: I have never used a wheelchair to get to his office before. He even ran the line himself, and I received 2 liters of IV saline over the course of three to four hours. After the nurse hooked up the second bag and increased the drip rate, my head started to clear a little bit. Then the floppy feeling started to dissipate. By the time my Mom brought me home, I did feel a little better, despite the energy expenditure of going to the office.

I felt like I turned a corner after that. I still could not be out of bed for very long. Standing at the sink for five minutes was too much. Getting up to put away a couple books brought on the now-familiar weakness. But I could sit up in bed and read, focus on a movie, or knit for awhile. That was a huge improvement. Then came the Hot Water Heater Episode, and I had a setback. I was back to being bedridden for a couple days, unable to stay upright without support. But by the end of week two, I did experience a little improvement. The pain in my legs was back down to pre-test levels. I no longer felt like I might pass out. And I started to feel a little bored, always a good sign for me. There is no doubt I was still crashed, but I started to think I might actually climb out of this one.

Then I sabotaged myself, a little. Long before my exercise test was scheduled, my parents had purchased handicapped-accessible tickets for my husband and I to accompany them to a baseball game. I still wanted to go. In fact, when my husband and I discussed whether I was physically able to go, I told him I couldn’t handle the emotional consequences of not going to the game. I was scared, unsure what the outing would do to my recovery and how bad the setback might be. But I threw caution to the wind and went anyway. I am so very glad I did! We had a blast, and it is always such a gift to get out in the world after a prolonged relapse. I’m sure that it has added days to my recovery. I’ve spent these last few days “resting aggressively.” Tomorrow is our 16th wedding anniversary, and I don’t know if I will be able to go out to dinner to celebrate.

My understanding is that a recovery time of more than one day after exercise testing is considered abnormal. In one study, none of the CFS patients recovered within 48 hours and 60% of CFS patients took more than 5 days to recover. That particular study only followed patients for 7 days post-testing, so it is likely that many of those patients took more than a week to recover. I think three weeks was a reasonable estimate for me. If I hadn’t indulged in the baseball game, I might be pretty close to baseline by now.

Instead, it’s three weeks out and I am writing this from bed. As soon as I publish this post, I will lie back down as I feel my head getting heavier – the concrete football helmet of fatigue. I won’t attempt anything more demanding than knitting for the rest of the day, and have some audiobooks to fill the time. Whether we go out to celebrate our anniversary will be a last minute decision, and I have already mentally allocated next week to more bed rest. I hope I can be back at baseline by the end of the week, but as anyone with CFS knows, I am ultimately not in control of whether I make that deadline.

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6 Responses to Recoverin’

  1. Ironic that you used the phrase rag doll – in the early days of the outbreak in Incline Village at north Lake Tahoe, that’s what the patients called the disease.

    I’m very glad that a number of different initiatives are zeroing in on post-exertional relapse (my own preferred version over malaise or fatigue) as THE cardinal symptom of this disease. It is something we really need outsiders to understand – that we may save up energy to go to something we REALLY want to go to, and look perhaps subdued but like a real person (even if in a wheelchair) – then pay for it for weeks.

    I used to want to have a business card to hand out – if you can see me, then I’m outside of the house; if I’m outside of the house, I am doing unusually well; so if you can see me, you don’t know what this disease is normally like for me.

    I always thought one of the reasons I responded so well to Ampligen was that my husband insisted that i recuperate – ironically, I find it’s the athletic community that understands the need to recuperate from an injury, and disease is injury. But since losing Ampligen from my Philadelphia site in February, 2008, I’ve had to push myself to get it back. I had to live by myself, 2500 miles from the person who makes me want to wake up in the morning, relatively helpLESS, to get the drug back from March 2010-April 2011. The I came home.

    Now I consider myself lucky that it’s just an 11-hour day by train and city bus to get to NYC twice a week for my Ampligen infusions, and then I’m back home. But the problem is, I have to walk at least 30 minutes just getting from train to train and train to bus and bus to office, and back. I’m not at a stage in recovery where I would normally be walking 30 minutes in a day – perhaps 6 or 8. So I have to push myself to get the drug, and it’s making for a slower recovery. I don’t know how long it will take for me to get back to where I was when I lost it in 2008. Dratted FDA.

    Thanks for writing about this. Excellent description. Should be printed out and handed around.


    • Jennie Spotila says:

      Thanks, Mary! I don’t think anyone except those closest to us really understand what a struggle it can be to just get out of the house, and that most days it’s not possible. I think that if the doubters paid the slightest bit of attention, they would see that ME/CFS patients are some of the strongest sick people around – unshakeable determination to do as much as we can.

  2. greenwords says:

    It is a great description of a crash, but I’m very sorry you’re going through it. I also hope the tests reveal some useful info for you.

    Happy wedding anniversary – I hope you manage to do something lovely despite everything.

    Feel better soon!

  3. Hi Jennifer,

    Sorry to hear that you are down..Prayers for a recovery soon and Happy Anniversary. I just found a wonderful Christian man who married me despite my CFS. We met on a Christian dating site a year ago and we married last October. I am blessed.

    Can you tell me what kinds of exercise they required of you and the length of time you were pushed to for everything? Was that testing done by a Neuro? I am seeing a neuropsychologist on May 24 for a long exteneded six hour appt. I know there will be must testing. Just wondering if you might be able to fill me in on the testing???? Hope you have some suggestions or you can refer me to someone who can. Stay strong! Hugs, Brenda

    • Jennie Spotila says:

      Brenda, the testing was done by an exercise physiologist. It was biking on a stationary bicycle until I couldn’t go any further, which ended up being about 12 minutes, two days in a row. I had neuropsych testing many years ago, and there was no exercise test – just a variety of brain twisters! I hope that helps!

  4. Anne Ö says:

    Thanks for reporting about both the exercise test and the horrible crash you are having to suffer through now. We could see it coming, but that doesn’t make it more bearable. Take care!

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