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

[Florianne]

Hi @Sushi I find it very stimulating to read you. I encourage you and truly wish you new improvements.

 

[Hd-x]

And the resting after each few minutes of exercise seemed to be essential.

I am very excited to try it out to divide up the cardio part and if this reduces/fixes the muscle burning.
Did you also have muscle burning problems if you do any cardio exercises like bike or cross trainer?

 

[Rufous McKinney]

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.

There has to be a way...to do just this tiny bit more...and so its encouraging to read this.

Last summer- for three months- I simply HAD to walk further to reach- the kitchen. And then I simply had to- hold the grandbaby. So I got stronger- over that three months by doing a bit more....

I could not hold her at first at all. Eventually- I could hold her for 5 minutes...and walk a little bit.

Trying some isometric yoga....

 

[Sushi]

Did you also have muscle burning problems if you do any cardio exercises like bike or cross trainer?

No, because they would not let me push that much. They never let me go to a point where I had any pain or burning. They were so very careful and cautious but they still gave me a green light to increase resistance and time when they thought I was ready. It has been very slow and having experienced this, I'd guess that many have had trouble from trying to increase too fast.

 

[Sushi]

They never let me go to a point where I had any pain or burning.

Another example of how they didn't push: For the final evaluation I had yesterday I was a bit concerned about whether they would push, but the markers they wanted to test didn't push me at all. They had me on the bike with a 10 lead electrocardiogram running (a doctor checking the baseline and an EMT monitoring throughout), a blood pressure cuff and a pulse oximeter. They asked me to try to keep my RPMs over 50 as they slowly increased resistance. At first it was totally comfortable to hit 80 or more RPMs but after 7 minutes I told them that I could not comfortably stay above 50 (they had increased the resistance about 5 times) so they stopped the test. On my initial evaluation I lasted 3 1/2 minutes. Then they checked how many times I could stand from sitting in a chair, in 30 seconds. I was able to stand 10 times whereas initially it was 6 times.

It is also written in red at the top of my exercise program/record: Expect permanent Cardiovascular duration limitation due to Chronic Fatigue Syndrome. All these records will be part of my medical record to help other doctors treat me.

After that I did my routine on the leg press--not part of the evaluation, but just cause I felt like it. Today, no PEM!

 

[Wishful]

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.

Have you, or anyone else with this symptom, had your blood or muscle tissue tested for actual lactic acid level? I'm wondering if it is a problem in the muscles, or if it a neurological symptom where you are registering pain/burning for normal signals from your muscles. It could even be a false signal created by the neural activity needed to make your muscles move (which apparently is significant neural exertion). Not psychological, but a misinterpretation of signals.

It could be a real physical problem, but I think it's at least possible that it's neuropathic for some PWME.

 

[rel8ted]

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!

I am so happy to hear that news!

 

[Hufsamor]

So happy for you!
I'll bookmark this one, and read it over...

 

[Tella]

Good to hear u are better! Well exercises, GET or not, can well be incorporated into our life. And should be, when it’s done soooo slowly and I’m tiniest steps. Unless u are severe or close to severe. Then it’s a big no no.
I get what u are saying @Dechi. How bad are u on the severity scale? My arms hurt just as I try to hold a book or cut my food...can’t imagine exercising but my body so wants to do it...
Does anyone here know about muscle loss while being bedbound? Guess I should start another thread...

 

[Sushi]

Does anyone here know about muscle loss while being bedbound?

That is what got me to rehab--I had had a mitral valve with severe regurgitation and in the 7 months before it was repaired, I was pretty much couch-bound and lost a lot of muscle. So, it is a problem. What to do about it is the big question.

Guess I should start another thread...

Good idea. I think it is a big problem for many here. Is it possible for you to receive physical therapy at home?

 

[Rufous McKinney]

It is also written in red at the top of my exercise program/record: Expect permanent Cardiovascular duration limitation due to Chronic Fatigue Syndrome. All these records will be part of my medical record to help other doctors treat me.

Its great to know you found these folks who are helping you but also understand your limitations...

I"d like to go back to the Phsy Therapist I saw..once. I felt really lousy on the next appointment day and didn't show up. Thats a problem with this...unreliability, and going on a bad day leads to a bad week.

 

[Dechi]

I get what u are saying @Dechi. How bad are u on the severity scale? My arms hurt just as I try to hold a book or cut my food...can’t imagine exercising but my body so wants to do it...

I consider myself moderate. I am couch bound and can go outside the house 1-2 times a week, 3 if I’m lucky.

 

[Dechi]

Have you, or anyone else with this symptom, had your blood or muscle tissue tested for actual lactic acid level? I'm wondering if it is a problem in the muscles, or if it a neurological symptom where you are registering pain/burning for normal signals from your muscles.

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.

I haven’t really had my lactic acid levels tested but I wouldn’t be surprised if they were normal.

 

[Dechi]

I don’t have that feeling except in relation to exercise.

Then we’re probably a different subset and it might not work for me.

 

[Wishful]

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.

The problem is that humans 'feel' pain and other physical problems that don't actually exist. We really do feel something, but it can be a misinterpretation of normal signals. People can 'taste' heat or 'hear' colours when signals are improperly processed, so it seems reasonable for people to feel pain, burning (lactic acid feeling) even in muscle function and chemistry is normal. That's why I was wondering if anyone had actual clinical testing to verify genuine physical problems in their muscles.

 

[Rufous McKinney]

That's why I was wondering if anyone had actual clinical testing to verify genuine physical problems in their muscles

And thats why its so frustrating that so few anythings get measured and we are just gropping in bodies in the dark.

Cancer victim gets personalized medicine, we get- NADA.

I can wash dishes at 10 oclock at nite but not at 3 pm. Explanation?

 

[MTpockets]

Keep us posted on this @Sushi I am interested to see if anything changes long term. Very curious to see if you can continue increasing the endurance. Fingers crossed for you.

 

[Dechi]

People can 'taste' heat or 'hear' colours when signals are improperly processed, so it seems reasonable for people to feel pain, burning (lactic acid feeling) even in muscle function and chemistry is normal. That's why I was wondering if anyone had actual clinical testing to verify genuine physical problems in their muscles.

I understand. I am convinced it has nothing to do with the muscles and that cell function is involved in my case.

 

[Sushi]

Keep us posted on this @Sushi I am interested to see if anything changes long term. Very curious to see if you can continue increasing the endurance. Fingers crossed for you.

Will do! I am hoping I can continue increasing strength as the trajectory over the last 4 1/2 months showed a very slow but steady increase. I will meet with them tomorrow to design a continuing program but my pattern of increasing about 1 minute a week will hopefully be sustainable. My goal is to be able to ride my bike again as it gave me such pleasure to ride along a beautiful trail!

That's why I was wondering if anyone had actual clinical testing to verify genuine physical problems in their muscles.

I believe Dr. Systrom has done that and did find abnormalities—maybe his patients could comment if they see this?

 

[Rebeccare]

I believe Dr. Systrom has done that and did find abnormalities—maybe his patients could comment if they see this?

One of the things Dr. Systrom looks at during his invasive exercise testing is how well the cells in muscles take in oxygen. And he has found that about almost half of the patients with unexplained fatigue he tested had problems with this for a couple of different reasons. This article over on Health Rising explains it much better than I could: https://www.healthrising.org/blog/2...-exertional-malaise-chronic-fatigue-syndrome/