Raising the Limit

I feel like I am getting close to baseline, the state I was in prior to the exercise testing. It’s taken almost seven weeks, and in that time I have left my house a total of seven times – 5 doctor appointments and 2 social outings in my wheelchair. It has been a hard slog back to normalcy, and I’m getting close.

I’ve been wearing a heart rate monitor for 18 days, and have the alarm set to go off when I go over 95 beats per minute. It does not take much to put me over that line. I’ve been so frustrated that it goes off when I climb a flight of stairs or laugh or walk through my yard. But that alarm has forced me to pace much more than I normally would. I am walking slower. I’m making different choices about what I try to accomplish in the house. And that alarm has stopped me from doing things I would normally have pushed to do, like weeding for even 5 minutes or planting flowers in the yard. I have done far far less than I was inclined to do.

Has it made any difference in my symptoms? Perhaps. I have not had a crash day since strapping on the monitor. But my fatigue, pain, and cognitive symptoms all persist. Nothing is off the charts, but none of it is gone, either. On the other hand, I have been coming back to baseline and I think it makes sense to attribute that progress to the careful pacing forced by the monitor.

Today I raised the limit on my heart rate monitor to 105 beats per minute. This was my anaerobic threshold on the first day of the exercise tests. Now that I am feeling closer to normal, I thought it made sense to experiment with the higher limit. If I can sustain that without crashing, perhaps it will be a sign of progress. So far today, I have been able to climb the stairs and water some plants in the yard without setting off the monitor for more than a couple of beats.

The anaerobic threshold is not the only barrier I am trying to avoid. There is what I am calling the crazy threshold (CT) to manage as well. The crazy threshold is that point at which I can’t take being isolated in this house for another minute. The past few days have been ok. My husband was home for most of the holiday weekend instead of running in several directions at once. We went out for ice cream at the dairy right by the house. And my parents came for a visit too. I’ve had enough human interaction that I don’t feel perilously close to the CT.

This week, I am in self-imposed seclusion and house arrest. We have a wonderful family event to attend on Saturday that will also involve a car trip. It will be a big outlay of energy, and I cannot WILL NOT miss it. I don’t think I will be resentful of the heart rate monitor if careful pacing gets me to and through this family celebration without a crash. Too much to hope for? We’ll see.

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9 Responses to Raising the Limit

  1. Another great blogpost, thanks for sharing. Good luck with the family celebration!

  2. Carollynn says:

    Thank you for posting about this and other ME/CFS issues. Since reading about your exercise testing a week ago I’ve been looking at other on-line sources to see if I can extrapolate or approximate my own AT without going through the actual test, or more precisely without gong through the pesky relapse. Can you write about how this might translate for others? How did you know that you could adjust your alarm to go off at 105 bpm rather than 95?

    Interestingly, days before I read your blog I had an experience with my heart rate that gave me pause. I was on rare travel to my nephew’s wedding in another state (you know the drill, saving up energy for weeks before and then tanking up again for weeks after). While there it was my dad’s 85th birthday, and we gave him a heart monitor for a gift. Everyone took turns taking their blood pressure and heart rate. I’d been seated for dinner for more than hour, and my heart rate was 91. Even though I’d paced myself with naps and remained seated at all of the wedding-related events, clearly I was on the edge of my AT just enjoying a quiet post-wedding meal with my dad, sisters, and husband. Since returning home I’ve been using a heart monitor at frequently but have to admit I don’t really know how to correlate it to anything. Can you make some general suggestions, refer me to another source, or bust this whole DIY process? It really is rather demoralizing to keep seeing my blood pressure so low and heart rate so high. Sometimes I wonder if it’s better to not be so tied to the numbers, that I might take more pleasure and elicit less fear without them.

    I went through the tilt table test a few years back, definitely have POTS, know my 20-min. threshold for fainting, how to mitigate that. It seems like managing heart rate would be a good new tool for self care. Thank you so much again.

    • Jennie Spotila says:

      Carollyn, low blood pressure and high resting heart rate seems to be very common in people with CFS. Unfortunately, I haven’t come across a way to estimate AT for people with CFS with any reliability. The normal AT calculation is to first find your maximum heart rate by subtracting your age from 220.

      220 – 43 (my age) = 177

      For a healthy person, the AT usually occurs at about 75% of maximum heart rate.

      177 x 75% – 133

      But these calculations just don’t seem to apply to people with CFS. My maximum heart rate in my exercise test was 167. And 75% of 167 is 125. But my AT is actually 95 to 105.

      I’m in no position to give medical advice, but looking at my numbers, my AT is about 55% of my age predicted maximum heart rate. So the calculation would look like this:

      220 – 43 – 177 x 55% = 97 beats per minute

      In terms of correlating the heart rate to how you feel, I am REALLY struggling with this. I’ll blog about it again soon. But the advice I got was to pay attention to how hard it feels to do what I’m doing. When an activity (any activity) starts to feel hard, it is time to rest no matter what the heart rate monitor says. I suggest you experiment with tracking how you feel and approximating your AT and see what you end up with. And let me know how you are doing, because it would be great to hear other people’s experiences!

  3. Carollynn says:

    Thank you for this thoughtful and useful reply. That sounds like a great approximation, given what else I’ve read. THANK YOU. This week my brain could not come up with the math! I am once again humbled by the tenacious and earnest fellow travelers on this ME/CFS path. I will keep you posted.

  4. Anne Ö says:

    Thank you so much for your reports, and THANK YOU for coining the term “the crazy threshold”! You really put your finger on the problem we struggle with. How to comply with pacing while at the same time managing the crazy treshold? Not easy!

    In the more severe cases, I think it just can’t be done. For me, being homebound, I feel that I’m pretty constantly on the wrong side of the crazy treshold. For my even more severely affected friends, that certainly is the case. And I see my other ME/CFS friends, who still have some capacity left, struggling to balance their pacing needs with the CT. It’s so hard.

    I’ve been thinking about just this for so long, but now I have a name for it. You’re a genious!

  5. Carollynn says:

    Hello again–It’s been more than a month since we corresponded and I began tracking my heart rate and blood pressure. I’m prepping today for an appt. with my doctor tomorrow and will share the data with him. But basically I was too demoralized by the process to keep doing it all the time, finding that doing so, like your recent entry, makes me feel imprisoned by this illness even more. In short, my blood pressure was all over the place and so was my heart rate, though that part I could slightly slightly more easily predict. A fairly avg. combo while resting would be anywhere from 94 to 104/65-70, with a heart rate of 86. I am a couple of years older than you, so I guesstimated my AT at 91 to 93 BPM, achieved, like yours, with nominal activity. But there were many readings quite a bit different, such as a heart rate of 105 after doing bills and driving to the post office to mail them (and feeling so-so); having a reallly good day that included going out to dinner with friends, just sitting there talking and laughing! and my heart rate at home after was 116! Earlier in the day, feeling good, I did a little weeding outside, kneeling, but it was hot out so I only lasted about ten min., and my heart rate was 118 but my blood pressure was 147/54–both gih and low! Still, I felt good that day. Best day of the last many months. A few days later I sat at my computer for two hours, which means I’m reclining, and my blood pressure was 76/47 with a heart rate of 85. So I’m glad that I’m documenting blood pressure as well as heart rate. But what a mixed picture! Then I saw this article at Prohealth,” Impaired blood pressure variability in chronic fatigue syndrome – a potential biomarker”, from QJM, June 2012 http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=17028.
    That’s when I basically gave up trying to document mine, because I knew that I couldn’t figure out a rhyme and reason, and trying to do so was so discouraging. I haven’t completely stopped–I even bring my heart monitor cuff along if I can get out of the house so that I can check in with it. Sure enough, my heart rate is much higher after 15 or 20 min. at the grocery store. Interestingly, this change of heart rate is very similar to what my best friend of 30 years who has pancreatic cancer goes through because of the chemo-related fatigue and weakened immune system. She has, thankfully, amazingly, been living with this cancer for more than four years since her diagnosis at Stage 4, and throughout her different treatments we have had such similar things happening in how it feels to have these two different illnesses. Well, it’s not encouraging news to report, but I wanted to follow through. I really appreciate your blog, how you continue to use your tenacious and flexible mind and formidable intellect in the face of debilitation. I also appreciate your courage in voicing the frustration of living in this cage. My own metaphor is being a happy dog on a choke chain leash getting yanked back at a length that is constantly changing… Just re-reading this before submitting, it sounds like I’m more active than I am. Those outings I reported were some of my only times away from the house in six weeks. Like you, I have not been bed-ridden so much as home-bound, so I know that I am in so many ways “lucky.”

    • Jennie Spotila says:

      Carollyn, thank you so much for writing again. I love your analogy of a dog on a choke collar chain. If only I was as easy to train as a dog, maybe I would be better at this pacing thing.

      Your blood pressure readings are very interesting. Have you been evaluated for orthostatic intolerance? Dr. Rowe has done excellent work on this, and did a webinar for the CFIDS Association which you can view here: http://www.cfids.org/webinar/series2010-past.asp#13 It sounds like it would be worth talking to your doctor about the low blood pressure and variability, if you have not done so already.

      Your heart rate results mirror mine very closely! It takes very little to jack up my heart rate over 110. Weeding in the heat would definitely do it, as does long outings like your dinner with friends. I am still having trouble correlating my heart rate to symptoms, unless it gets very high (over 105 or so). I have been very surprised to see that showering when I first get up really raises the rate too. Temperature (inside and out) seems to have a strong effect.

      My goal is to learn to pace well enough that even a big outing when my heart rate soars does not result in multi-day crashes. I’m slowly learning to listen to the heart rate monitor, and change plans if it is running too high.

      Thank you for your kind words about the blog. It encourages me to keep writing!

  6. Carollynn says:

    Thank you for your reply also. Yes, I follow the CFIDS Assoc. webinars, and the validation I feel through them has been some of the best medicine I’ve recieved in recent years. And yes, I had the tilt-table test in 2007, fainted at about the 20 min. mark. The cardiologist prescribed Midodrine, but I had an allergic reaction. I have been having weekly acupuncture since 2004 (the best treatment that exists for me so far), and my acupuncturist added a bit more Chinese licorice to my tea formula, for licorice will increase blood pressure too and is the basis for the Rx Florinef (not sure about spelling). However, that just made me feel bloated and didn’t help with the dizziness. And my recent data collecting suggsts that it really wouldn’t be hlepful to try to elevate my blood pressure in general either because of that day when it was weirdly 147/54. Now I manage NMH/POTS by awareness, sitting or laying down when need be, avoiding heat, and carrying a little tri-fold camp stool from REI with me on outings that may require standing. (A couple of times a year I save up energy for an outing at an art museum, which feeds my soul though of course I have to pay for it for some weeks after. I’ve been surprised to find that museums let me bring this little stool in when I tell them what it’s for.) I do know that the timing threshold for my blood pressure drop is pretty consistently 20 min., whether I’m at the grocery store walking with a cart or sitting upright for meditation. (For meditation, this keeps me humble. I won’t be able to “sit” all day or go to meditation retreats and think I can “master” it! Despite my limitations I still find I have this compulsion to be an high achiever! Now there’s something those of us with ME/CFS have to make peace with.)

    While it is discouraging to see blood pressure and heart rate all over the place, I would encourage others to document theirs because it does help those who are well around us perceive how things are simultaneouslly sublty yet profoundly awry in us. My husband is the most supportive spouse I’ve heard of for all of these eight years that I’ve been disabled, yet that data caught his attention in a big way and has given HIM something to share with others that help them grasp what we deal with. I also know that I need to document it in my efforts at “converting” my cardiologist who, despite seeing me faint during the tilt table test, doesn’t reallly believe ME/CFS exists! Thankfully I don’t take that personally (at least this week!), but I do see that as a PWC who reads up on everything it is my duty to bring those doctors I can up to speed. Everyone I see is getting a copy of the just-released primer created by the IACSFME on my next visits.

    • Jennie Spotila says:

      This is all great information, Carollyn, and I completely agree with you about the importance of gathering our own data and educating doctors!

      The camp stool is a great idea, and I will have to look into that. Have you considered using a wheelchair for big outings? Museums and even grocery stores usually have wheelchairs available. I have my own manual wheelchair (since there is always someone with me to push it) and it is the ONLY thing that makes airports possible (and only rarely). I also use it for the rare occasions we go to the movies or other big outings that require lots of standing and walking. It was hard to start using it, but I got over the emotional awkwardness when I saw how much it helped me.

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