Just finished an "intelligent" program of cardiac rehab and doubled my exercise capacity

Sushi

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I know that we all have "feelings" about graded exercise and that many have had extremely bad experiences with it. But, my cardiologist (ME/CFS literate) wanted me to try cardiac rehab. She said, "Teach them about ME/CFS--it is an excellent facility." So, with trepidation, I began and 36 session program armed with articles and data. They listened! They took ME/CFS and Dysautonomia seriously and designed a program that I could do without payback (loosely based on Dr. Nancy Klimas's program). I was monitored by doctors, EMTs, and exercise physiologists. They had me wear an EKG monitor for the first 6 sessions, they took my HR and O2 stats every 5 minutes. I rested for 5 minutes after each few minutes of exercise. They helped me set reasonable goals and modified the program according to my feedback. There were times when I wanted to increase time or resistance level and they said, "Not yet, you aren't ready."

Result: I more than doubled my aerobic exercise time and the amount of weight I could lift. We concentrated on the legs and used all recumbent machines. With stronger legs and greater cardiac efficiency, I have less OI and less PEM. Now that I have finished the program (paid for by insurance) they will help me design a program to continue at a local community center gym. I am really pleased!
 

Sushi

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@Sushi
Fantastic news! What would your advice be for someone trying to do a mini version on our own?
Good question! For me, here is what was important: to go really slow, to break for several minutes of rest after every few minutes of exercise (I took a book to read), to stick to recumbent machines--the leg press and recumbent bike for instance. To start with super low resistance, if I got payback, I backed off. Their usual program was 3 times a week but they had me do 2 times in order to have more recovery time. (I did Monday and Friday). To repeat, I went super slow and didn't increase weight or time until it felt easy. (I used to try the next level for a few seconds to see how it felt before I moved up). I increased time by about 1 minute per week. I'll post pictures of the two machines that worked best for me. They had me do one lap around the gym before and after each session and to stretch at the end--they even had a stretching station. They also made a chart to keep track of what I had done in each session.
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Judee

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Do you think your pacemaker had something to do with the improvement as well? I think you said they set it to a set rate of heart beats per minute. Did that help you stay within your anaerobic threshold, do you think?
 

Sushi

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Do you think your pacemaker had something to do with the improvement as well? I think you said they set it to a set rate of heart beats per minute. Did that help you stay within your anaerobic threshold, do you think?
My pacemaker did help with OI as before I got it my resting pulse was about 43 - 47 so blood was not circulating very well. Now it is set for a minimum of 70 and I am thinking of trying 75 as a minimum at the recommendation of some of the rehab medical people. I have never had my anaerobic threshold tested but the higher HR keeps my O2 levels better. Any ideas?
 

Sushi

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Can you give a little more info as to how many reps you do, the specific exercises, sequence with rest time and total duration when you started ?
Sure. When I first started my total aerobic time (I used two different machines--the Cybex recumbent bike pictured above and the Nustep recumbent cross trainer (pictured below), was 14 minutes, divided up into about 4 short periods of exercise, each about 3 minutes, with 5 minutes of rest between each. The machines were set at the lowest resistance the machine allowed. Over 4 1/2 months I slowly increased time and resistance until I reached 5 exercise periods of 5 or 6 minutes (still with 5 minutes rest in between each) and and resistance levels of 3 or 4 (1 being the lowest) For instance I would do one session on the Nustep of 5 minutes at level 3, then one of 6 minutes at level 3, then repeat that sequence on the Cybex with a 3rd session of 6 minutes at level 4--total 28 minutes plus about 3 minutes walking 2 laps around the gym--one before and one after. I finished with about 6 stretching sequences done in a stretching frame. (picture below)

Then I would use the leg lift, starting at level 2 (60 lbs) and doing 2 sessions of 6 lifts with my feet in different positions to activate different muscles. I finished using level 3 (80 lbs) for 3 sessions of 12 lifts each with my feet in 3 different positions. (5 minutes rest in between each) I actually still have 2 more sessions as I had to miss a couple but the final evaluation had already been scheduled and too many staff were involved to change it. I'll do those 2 sessions next week.

Here is the Nustep--it uses both arms and legs. These machines are really high quality, ergonomic machines and very expensive so you would only find them at a gym. I will continue at a city Community center that is 5 minutes away and free. Hope this makes it more clear.
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Sushi

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Did you have muscle weakness and acid lactic feeling as a base symptom before starting the program ? And now ?
My muscles were very weak, yes, and they are still much weaker than a "normal" person, but they are 100% stronger than they were when I started and this leads me to believe that I can continue to strengthen them if I am committed and continue to very slowly increase time and resistance. This gained strength has improved OI and PEM, though I still get mild PEM. Time will tell!

Could you describe "lactic acid" feeling? I do use a small amount of medical cannabis (I have a card) after rehab sessions to deal with any inflammation created.

P.S. As far as weak muscles, the patients all talked to each other while exercising and I would find myself next to someone much older than I am, who had just had a heart attack and they were exercising at level 6-8 for about 15 minute sessions--so I saw how weak I was in comparison.
 
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Dechi

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Could you describe "lactic acid" feeling? I do use a small amount of medical cannabis (I have a card) after rehab sessions to deal with any inflammation created.
The acid lactic feeling is the same as when you train and your muscles start to give up. They kid of become shaky and you feel a little tingling. It happens a lot when you do weight lifting, for example.

Maybe I shouldn’t have said muscle weakness. That’s what I call my symptom, but it’s not the same muscle weakness as when someone is frail or old or deconditioned. I never stopped weight lifting (except now I do it for 15 seconds at a time, and for a duration of 4 minutes per week) so I still have some muscles that are strong, but I have no endurance and often I will be shaky inside.

I probably don‘t make sense. It’s hard to explain. I was trying to find out if you had that symptom too.
 

Sushi

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The acid lactic feeling is the same as when you train and your muscles start to give up. They kid of become shaky and you feel a little tingling. It happens a lot when you do weight lifting, for example.
They wouldn't let me push that hard--if I did, yes, I would get those symptoms. I know because I got them when I was trying to exercise on my own in earlier years.
I never stopped weight lifting (except now I do it for 15 seconds at a time, and for a duration of 4 minutes per week
I also lift hand weights at home but only a few reps a day.
I probably don‘t make sense. It’s hard to explain. I was trying to find out if you had that symptom too.
Yes, I think I did, but in the rehab program they don't let you go that far. After each few minute session they measured my O2 and pulse and quizzed me on the level of exertion I experienced. If they felt I had pushed too hard, they backed me off.

I certainly don't think that this is going to "cure" me--I am just hoping to continue improving some of my worst symptoms like OI and PEM.
 

Dechi

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They wouldn't let me push that hard--if I did, yes, I would get those symptoms. I know because I got them when I was trying to exercise on my own in earlier years.
Again, I didn’t explain well. This lactic acid feeling is one of my base symptoms. I have it pretty much permanently when I use my muscles, it is not triggered by exercise. If I did exercise then yes, it would be even worse.

If there was a clinic like the one you went near by, I would certainly try it even though I’m almost 100% certain I would not improve.
 

PatJ

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I'm happy to read about your success Sushi!

@RebeccaRe has mentioned recumbent exercise in several posts such as this one:
I have found that using a recumbent exercise bicycle has been a good way for me to get in exercise. Dr. Systrom's theory of ME/CFS is that an autoimmune process has damaged nerves that stimulate our veins to return blood to the heart, which then isn't completely full before pumping, so we don't use oxygen efficiently and instead experience a buildup of CO2 and lactate that cause fatigue, pain, and all that other fun stuff. According to him, using a recumbent cycle instead of walking or using an upright cycle may help mitigate that because blood doesn't have to fight gravity quite as hard to get back to your heart. Over the course of a little more than a year (and with the help of medication), I have gone from barely being able to cycle for two minutes to being able to cycle for half an hour on a good day without too much PEM.
And this one:
My doctor recommended recumbent cycling for exercise. This article explains why, if you have the energy to read it--the short story is his theory is that people with CFS have nerve damage in their veins which makes them bad at pumping blood to the heart. Using a recumbent cycle makes it so that your blood doesn't have to fight against gravity to go back to your heart, unlike exercising on a treadmill or upright cycle, so this type of exercise might be better tolerated.
 
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Hello @Sushi, I don't know if you said it, but where do you rank on the disease severity scale: very severe, severe, moderate ..... Can you give approximately the number of hours that you are in bed? Functional? Thank you. I'm very glad for you and it's very nice to share your experience with us.
 

Sushi

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I have found that using a recumbent exercise bicycle has been a good way for me to get in exercise. Dr. Systrom's theory of ME/CFS is that an autoimmune process has damaged nerves that stimulate our veins to return blood to the heart, which then isn't completely full before pumping, so we don't use oxygen efficiently and instead experience a buildup of CO2 and lactate that cause fatigue, pain, and all that other fun stuff. According to him, using a recumbent cycle instead of walking or using an upright cycle may help mitigate that because blood doesn't have to fight gravity quite as hard to get back to your heart. Over the course of a little more than a year (and with the help of medication), I have gone from barely being able to cycle for two minutes to being able to cycle for half an hour on a good day without too much PEM.
Thanks @PatJ for remembering this quote and reposting it and yes @RebeccaRe —it is great to read that you have had similar experience. I also found the leg press to be very helpful, with the legs even higher than on a recumbent bike.
Again, I didn’t explain well. This lactic acid feeling is one of my base symptoms. I have it pretty much permanently when I use my muscles, it is not triggered by exercise. If I did exercise then yes, it would be even worse.

If there was a clinic like the one you went near by, I would certainly try it even though I’m almost 100% certain I would not improve.
I don’t have that feeling except in relation to exercise. The facility I went to is the rehab arm of a big hospital. They deal with people according to their needs and limitation. I know that all programs are not nearly as good, but have been amazed to see how many people they work with who are actually in wheelchairs. They are really creative and flexible in how they work with patients with different problems. I certainly had a lot of doubts about improving and at first I didn’t see improvements—but sticking with it was worth it. Now self-discipline will be tested as I continue on my own.
Hello @Sushi, I don't know if you said it, but where do you rank on the disease severity scale: very severe, severe, moderate ..... Can you give approximately the number of hours that you are in bed? Functional? Thank you. I'm very glad for you and it's very nice to share your experience with us.
I have been sick for decades and for many years I was “mild.” But for the last 14 years I have been “moderate,” with a lot of PEM and OI, sprinkled with almost daily migraines and very limited stamina. For instance a phone call with a friend could wipe me out. I have been bed/couch bound at times though usually I’d have about two hours a day when I was functional for things like working on a computer. If I were in PEM though, I’d lose those two hours. So actually the hardest part of this program for me was the 25 minute drive in each direction. Continuing at a community gym five minutes away will make that easier. I am also signing up for a weekly Pilates class (with machines). It is also very close by and the instructor has agreed to let me pace myself.
 

Sushi

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@PatJ, you have a good memory!

@Sushi, have you noticed much of a difference in your energy level and ability to function outside of exercising? Although I know that I am stronger from my gentle exercise and that it's good for me, it hasn't really made much of a difference in what I am able to do and tolerate off of the exercise bike.
I can’t say that I “feel better” but I can do more because of the diminished PEM and OI. I do feel better right after the exercise session and the rest of the day, and I’d guess that is because adrenaline has been increased, as I know I have low adrenaline. I also notice that daily household tasks are easier because of stronger muscles. Do you notice any of this?
 

Hd-x

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When I first started my total aerobic time (I used two different machines--the Cybex recumbent bike pictured above and the Nustep recumbent cross trainer (pictured below), was 14 minutes, divided up into about 4 short periods of exercise, each about 3 minutes, with 5 minutes of rest between each. The machines were set at the lowest resistance the machine allowed. Over 4 1/2 months I slowly increased time and resistance until I reached 5 exercise periods of 5 or 6 minutes (still with 5 minutes rest in between each) and and resistance levels of 3 or 4 (1 being the lowest)
Thankx a lot for sharing. :thumbsup:
I made much progresses with a modified intuitive HIT training route (weight lifting), but was struggling how to do and modify the Cardio part so that this also works.
If you divided up into about 4 short periods, thats somewhat similar like Cluster training, will try it too.
 

Sushi

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If you divided up into about 4 short periods, thats somewhat similar like Cluster training, will try it too.
And the resting after each few minutes of exercise seemed to be essential. I got that from Dr. Nancy Klimas’s recommendations. I am really grateful that my electrophysiologist suggested that I do this and referred me to the program. Having the right kind of close medical supervision has been very helpful.