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

[Wishful]

I checked the page RebeccaRe suggested. It shows that some PWME have problems with oxygen extraction, but 55% don't. I checked a couple of other papers which also indicated that some PWME have such problems, but other don't. From that, it seems that muscle problems are a secondary symptom of ME that some people have, but isn't a core part of ME.

 

[Sushi]

I checked the page RebeccaRe suggested. It shows that some PWME have problems with oxygen extraction, but 55% don't. I checked a couple of other papers which also indicated that some PWME have such problems, but other don't. From that, it seems that muscle problems are a secondary symptom of ME that some people have, but isn't a core part of ME.

Yes, it is an unknown chicken/egg situation. What many of us do know from personal experience is that it is more difficult for us to build muscle than for normal people. Before I realized that I had mild ME/CFS I used to ride with a bike club. Each spring the cyclists would have to regain muscle lost during the winter. It took me about three times as long to rebuild muscle. And while my rehab program tested my oxygen Sats every five minutes, that reading would not reflect the muscle’s uptake of oxygen.

 

[Sushi]

Quick update: I’ve had to wear compression knee socks every day for years. Now I’m noticing that on a day when I have done these exercises, I don’t need the knee socks. I’m guessing that the activated muscles themselves are providing compression. Anyone else have experience with this?

 

[Strawberry]

@Sushi This is awesome news! And I'm very glad to hear of it. Were you able to get insurance to pay for this because of your heart issues? I'm wondering if I could get something covered by insurance, but if it is because of your pace maker it might be difficult for me to get authorization. I wouldn't trust myself to exercise again without being monitored. It was a very painful experience last time I tried on my own...

(oh and PS, I wanted sushi to be my user name, strawberry was my 2nd choice)

 

[Sushi]

@Sushi This is awesome news! And I'm very glad to hear of it. Were you able to get insurance to pay for this because of your heart issues? I'm wondering if I could get something covered by insurance, but if it is because of your pace maker it might be difficult for me to get authorization. I wouldn't trust myself to exercise again without being monitored. It was a very painful experience last time I tried on my own...

Yes insurance covered it completely. I’ll need to check my Medicare reports, but I’d guess it must have been very expensive given the number of medical staff and level of monitoring involved. When I talk to others there, they have a wide variety of cardio and pulmonary conditions that qualify them. For me, it wasn’t the pacemaker but the mitral valve repair that qualified me. If you have a supportive primary care or cardiologist you could ask if you would qualify. If they were to get up to date, I’d hope that Systrom’s research on inadequate left ventricle filling would qualify people—but, as we know, insurance lags behind research.

(oh and PS, I wanted sushi to be my user name, strawberry was my 2nd choice)

Beat you to it!

 

[Strawberry]

If you have a supportive primary care or cardiologist you could ask if you would qualify.

I have nothing right now. But I have an appointment with Dr K in about 6 weeks, I'll run it by him and see if he thinks it is worth looking into. If not, I might try lifting weights again, literally one rep at a time. I tried lifting 2 pounds (laying down) for about 30 seconds about 7 years ago and got horrible muscle spasms and electrical shocks for weeks after.

Beat you to it!

You certainly did! By quite a long shot!

 

[Sushi]

I tried lifting 2 pounds (laying down) for about 30 seconds about 7 years ago and got horrible muscle spasms and electrical shocks for weeks after.

That is where exercise physiologists are so helpful in helping you to find the right positions and the right exercise to suit your body and health condition. Yesterday I was showing some exercises that I had been doing at home to one of the staff and they showed me a better way to do them that would avert problems.

 

[Gingergrrl]

Quick update: I’ve had to wear compression knee socks every day for years. Now I’m noticing that on a day when I have done these exercises, I don’t need the knee socks. I’m guessing that the activated muscles themselves are providing compression. Anyone else have experience with this?

First, I am thrilled for you, Sushi, that you have found this cardiac rehab and that it has been so successful!

Re: compression stockings, I don't want to take this off-track and may start a new thread later, but wanted to comment b/c I just did the "NASA Lean Test" a few days ago for my main doctor. Many years back I tried compression stockings (actually from your excellent referral to BrightLife Direct) but they didn't do much for me (at that time) b/c I was so ill back then and I was not yet on the right treatments.

At present, I am in remission from treatments but I am still unable to climb stairs which is maddening . I've done PT, Pilates, and can now walk five miles in a day (on flat ground/surface) yet I cannot climb more than 5-6 stairs without triggering an episode. I am mentioning this b/c the Lean Test showed that within three minutes, the blood was pooling in my feet and they turned purple. And within six minutes, the BP machine could no longer pick up a reading (and we tried 6-7x) and my doctor thinks my BP had dropped too low, or become too faint, to record.

He said that in addition to my significant improvements, I have learned to compensate for these issues when walking on a flat surface that I cannot do with stairs. He said (and this is from my memory and NOT a direct quote) that stairs require more anti-gravity muscle use. We are going to re-do the test with me taking my two POTS meds (which I had not taken the morning of the test) and we are going to try a few interventions.

One is to try increasing my Midodrine from 2x/day to 3x/day and another is to try compression stockings again and see if they improve my ability to climb stairs without triggering a major episode. I had wanted to let you know b/c we were chatting about stairs in another thread.

I was curious, Sushi, are you now able to climb stairs after your program of Cardiac Rehab (and I apologize if you already said this and I missed it)! Also, when you wear compression stockings, does it make any difference when you try to climb stairs vs. when you do not wear them? I know you don't have POTS or the autoimmune diagnoses that I have but am still curious since we both had severe Dysautonomia that affects our ability to climb stairs.

 

[Gingergrrl]

Yes, I have been tested with 2 different EMGs and muscle activity is normal. I describe it as a lactic acid feeling, but it might just be how it feels when there is not enough oxygen in the cells and/or blood flow in your body.

Dechi, Are you able to climb stairs and did you have muscle weakness when you had that feeling as if oxygen was not going to your cells? I had progressive muscle weakness for 4+ years, especially of my upper body (arms, lungs, diaphragm, neck, etc) and it felt like you described as if I was not getting enough oxygen to my cells/body.

A few years ago, my Endo (who is not my main doctor and treats my thyroid issues) had said if it did not plateau, I could end up on a ventilator. My muscle weakness and lack of oxygen feeling is 100% gone from my treatments (since 2018) and has never returned. It made me wonder if you have any similarity to my case since I think you also had abnormal PFT's (pulmonary functioning tests) like I did prior to my treatments?

But I wasn't sure if your lactic acid feeling includes actual muscle weakness like mine did?

 

[wingate]

Great news, @Sushi. It must feel good to have some small gains in your fitness and be able to do a bit more!

I'm glad to hear that the staff at your program were so conservative and didn't make you push yourself too hard. Were they already aware of ME/CFS and PEM? Or were you the one to introduce them to it?

Your program sounds a bit like this POTS exercise program I came across awhile ago - lots of rest between exercises and lots of recumbent exercise: https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

 

[Sushi]

He said that in addition to my significant improvements, I have learned to compensate for these issues when walking on a flat surface that I cannot do with stairs. He said (and this is from my memory and NOT a direct quote) that stairs require more anti-gravity muscle use. We are going to re-do the test with me taking my two POTS meds (which I had not taken the morning of the test) and we are going to try a few interventions.

According to my autonomic specialist, we use a different type of muscle entirely for stair climbing and that it had no comparison to walking on flat ground. (Fast twitch, slow twitch?) He said that, in his experience, if you could climb stairs, you didn’t have dysautonomia. Let me know how it goes with the compression knee socks and the medication adjustments.

I was curious, Sushi, are you now able to climb stairs after your program of Cardiac Rehab (and I apologize if you already said this and I missed it)! Also, when you wear compression stockings, does it make any difference when you try to climb stairs vs. when you do not wear them? I know you don't have POTS or the autoimmune diagnoses that I have but am still curious since we both had severe Dysautonomia that affects our ability to climb stairs.

I can’t answer this because I literally have no stairs in my life—I never encounter them. I don’t think I have tried to climb any stairs in years! But, from years ago, yes, doing anything upright was easier with compression knee socks—including stairs.

'm glad to hear that the staff at your program were so conservative and didn't make you push yourself too hard. Were they already aware of ME/CFS and PEM? Or were you the one to introduce them to it?

Your program sounds a bit like this POTS exercise program I came across awhile ago - lots of rest between exercises and lots of recumbent exercise:

They knew a little bit about dysautonomia but nothing about ME/CFS or PEM—that is why I brought them articles. They could also see those diagnoses on my medical records. My electrophysiologist (who referred me) told me that I would have to educate them on ME/CFS, but that they were good and would listen—and they did.

And yes, we designed my program on the basis of a POTS-Dysautonomia exercise program—mainly Dr. Nancy Klimas’s. But they adjusted it according to the vitals they took about every five minutes. We all had pulse Ox’s hanging around our neck and 30 seconds before we finished an exercise segment we raised our hand and they would take a reading and record it. They also had a big electronic board in the middle of the gym displaying the continuing EKGs of those being monitored and a cardiac nurse was watching on another display. They had me wear an EKG monitor for the first 6 sessions. Just to get the picture, there were probably about 30 of us exercising at one time and about 10 to 15 staff members circulation among us.

 

[Wishful]

According to my autonomic specialist, we use a different type of muscle entirely for stair climbing and that it had no comparison to walking on flat ground.

That's interesting. Maybe that explains why I could bike or hike for hours without triggering PEM, but would trigger from climbing a ladder once, or spending a minute washing windows. I thought it was how commonly I used the muscles, but maybe it's the fast twitch vs slow twitch. Of course, maybe frequent use changes muscle cell types from one to the other.

 

[Dechi]

Dechi, Are you able to climb stairs and did you have muscle weakness when you had that feeling as if oxygen was not going to your cells? I had progressive muscle weakness for 4+ years, especially of my upper body (arms, lungs, diaphragm, neck, etc) and it felt like you described as if I was not getting enough oxygen to my cells/body.

I am able to climb stairs but after 2-3 steps the acid lactic/muscle weakness starts and it gets harder with each step. On bad days it gets a lot worse and I get out of breath rapidly on top of that. So yes, I do have muscle weakness, it’s one of my main symptoms. The weakness is pretty much in any muscle I use. I am still strong enough, although far from what I used to be, but I have no endurance. I can lift 15-20 pounds for 15 seconds.

It made me wonder if you have any similarity to my case since I think you also had abnormal PFT's (pulmonary functioning tests) like I did prior to my treatments?

. You’re right, I do have some abnormal pulmonary testing but nobody seems to be concerned about it. I just had another one done that came back normal, except my Po2 levels at 68.

We do seem to have similarities, except you were much sicker than I am now. I have been getting worse for 5 years, just a little bit at a time, but steadily.

I know you described it in much details but I can’t remember what your treatment was. Can you summarize it ?

 

[Gingergrrl]

According to my autonomic specialist, we use a different type of muscle entirely for stair climbing and that it had no comparison to walking on flat ground. (Fast twitch, slow twitch?)

My doctor said something very similar but mentioned "anti gravity muscles". I've been trying to research this, and also the "fast twitch, slow twitch" muscles that you mentioned but can't really find anything helpful on Google so far.

He said that, in his experience, if you could climb stairs, you didn’t have dysautonomia.

I would agree with this.

Let me know how it goes with the compression knee socks and the medication adjustments.

I haven't had a chance to try either yet but definitely will let you know.

I can’t answer this because I literally have no stairs in my life—I never encounter them. I don’t think I have tried to climb any stairs in years! But, from years ago, yes, doing anything upright was easier with compression knee socks—including stairs.

I have no stairs in my current daily life but now that I am in remission (for lack of a better word), there are so many restaurants, theaters, stores, school events, etc, that have stairs and I have to call ahead to figure out if it will be accessible to me. I used to be able to buy concert tickets on-line but this is impossible now b/c you don't know if there will be 50 stairs leading to your seat.

My old office (where I worked prior to getting ill) was on the 3rd floor in a bldg in which the elevator was broken at least 50% of the time and would be completely inaccessible to me at present. I'm not saying this to complain and I thank God (and my doctors) every day for my improvements but it would be amazing to be able to climb one flight of stairs. When I use the word "remission" it feels like the wrong word b/c I feel like a person in remission should be able to climb a flight of stairs but I cannot. But I guess "remission" is not the same as "pre-illness level" which I have no delusion of ever attaining that level of functioning or stamina.

I thought it was how commonly I used the muscles, but maybe it's the fast twitch vs slow twitch.

@Wishful If you ever happen to find a website or link that explains the fast twitch vs. slow twitch muscles and how it relates to climbing stairs or POTS/ Dysautonomia, I would love to see it!

The weakness is pretty much in any muscle I use. I am still strong enough, although far from what I used to be, but I have no endurance. I can lift 15-20 pounds for 15 seconds.

We were definitely different in this regard, and I think this was one of the issues (in 2016) that confirmed to me that I did not have ME/CFS vs. a different type of autoimmune dysautonomia and illness. My illness was progressive (from a neuromuscular perspective) and it wasn't that I could lift 15 lbs and then pay the price with PEM vs. that I reached the point that I could not even open my front door, or a bottle of water, or turn on the faucet in the shower b/c my muscles were so weak. I remember my Endo (who was not deeply involved in my case and mostly treated my thyroid) said that if the muscle weakness did not plateau, I could end up on a ventilator. It is now completely gone except for being unable to climb stairs.

You’re right, I do have some abnormal pulmonary testing but nobody seems to be concerned about it. I just had another one done that came back normal, except my Po2 levels at 68.

When you say that your Po2 was 68, are you referring to an arterial blood gas test or to a PFT (spirometry test)? I think we might be talking about two different things but I do remember a few threads on PR where you were talking about having an abnormal PFT test.

I know you described it in much details but I can’t remember what your treatment was. Can you summarize it ?

I don't want to take Sushi's thread off track but my treatments that got to the root cause were high dose IVIG and Rituximab. I also had/have treatments for symptom management of POTS, Hashimoto's, MCAS, etc.

 

[Sushi]

I used to be able to buy concert tickets on-line but this is impossible now b/c you don't know if there will be 50 stairs leading to your seat.

I forgot about theaters! Yes, I can climb to my theater seat with no problem wearing compression knee socks. Those steps are so wide that it feels different from trying to march up a staircase in an office building.

My old office (where I worked prior to getting ill) was on the 3rd floor in a bldg in which the elevator was broken at least 50% of the time and would be completely inaccessible to me at present.

I understand completely. My worst experience of this was when I lived on a barrier island that was hit by a hurricane. All the elevators in all the buildings were ruined and because of the number, it took a year to get our elevator fixed. I lived on the 5th floor and getting myself plus groceries and everything else up there was a nightmare. I'd climb half a floor, sit down (panting) and rest for 5 minutes, and then continue until I reached the top. The sound of the elevator moving again after a year was totally thrilling!

 

[Dechi]

When you say that your Po2 was 68, are you referring to an arterial blood gas test or to a PFT (spirometry test)? I think we might be talking about two different things but I do remember a few threads on PR where you were talking about having an abnormal PFT test.

My past comment were about a different test, but I don’t know what you call it. It was at a different clinic, a few years ago. The Po2 at 68 is from another test I did recently, which I found very hard. They put you inside a big plastic stall, put a clip on your nose and a big piece in your mouth and then you have about 10-15 different breathing exercises to do, 4-5 times each. They measure different values on a computer while you do it. I did it without my asthma medication, then again with it.

@Sushi @Gingergrrl I would disagree you don’t have dysautonomia if you can climb stairs. I’ve been tested with neurally mediated hypotension, a type of orthostatic intolerance, and I can climb stairs. If I climbed long enough, at some point I would most probably pass out.

eta : I checked my report with the Po2 at 68 and it is a blood gas test.

 

[Murph]

Pleased to hear this @Sushi and I recognised a pattern in a few of the things you said.

I can exercise a bit so I have experience on what works for me. Exercises interspersed with rest is SO much easier than steady exercise.

Walking or running are quite difficult but doing a few little strength exercises with 5 minute gaps between them? Often quite doable. I also find that some muscle groups tend to lead to PEM if i work them (shoulders arms and quads especially) but others I can thrash a bit harder without much payback (core muscles, notably. I can do a fair few situps without major problems.)

Exercise doesn't cure, but simply shifting out one's PEM threshold a bit is very freeing.

 

[Murph]

That's interesting. Maybe that explains why I could bike or hike for hours without triggering PEM, but would trigger from climbing a ladder once, or spending a minute washing windows. I thought it was how commonly I used the muscles, but maybe it's the fast twitch vs slow twitch. Of course, maybe frequent use changes muscle cell types from one to the other.

The mention of window washing gets to me. I've also given myself PEM from using my arms. I've busted my brain trying to figure out why using some muscles leads to PEM more consistently than using others.

Part of me thinks it's using muscles unexpectedly. Which is to say muscle fibres that haven't been used in a long time. Perhaps viral reserves are in there and they get let go when we use those undisturbed muscles?

perhaps when our muscle cells get unfit, they change in some way that means they leak ATP if we use them?

Or alternatively perhaps (following the CCI/brainstem hypothesis) certain muscle groups are tied to parts of the brainstem that are under strain/compression.

 

[Sushi]

I also find that some muscle groups tend to lead to PEM if i work them (shoulders arms and quads especially) but others I can thrash a bit harder without much payback (core muscles, notably. I can do a fair few situps without major problems.)

Yes, my exercise physiologists noticed this too and took me off all upper body machines and leg machines, other than the recumbent leg press.

The mention of window washing gets to me. I've also given myself PEM from using my arms. I've busted my bain trying to figure out why using some muscles leads to PEM more consistently than using others.

Arm use (particularly over the head) is notorious for causing PEM. I found an article on why but it is in my computer and I am on an iPad at the moment. But you could probably find it with a google search for something like arm exercise dysautonomia.

Edited to add: Here is a thread on it, but it doesn’t explain the cause. I’ll try to find it later. https://www.dinet.org/forums/topic/10567-lifting-your-arms-over-your-head/

 

[Sushi]

Arm use (particularly over the head) is notorious for causing PEM. I found an article on why but it is in my computer and I am on an iPad at the moment. But you could probably find it with a google search for something like arm exercise dysautonomia.

Activation of arm muscles, especially when upright (when reaching upwards, washing dishes, ironing clothes, and pushing a lawnmower), may increase cerebral symptoms of orthostatic hypotension by a subclavian steal-like syndrome by further reducing vertebral and thus brain stem blood flow.

https://jnnp.bmj.com/content/74/suppl_3/iii31