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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Weight training with CFS ?

Dechi

Senior Member
Messages
1,454
I apologize for those severely ill. My post is for those who are somewhat able to do exercise. I haven't been sick long, three years, so I am still learning how to manage this illness. So far it took me about 1 1/2 years to stop having PEM. I attribute it to taking Nimodipine, which I started in march at a very low dose. In may I had my last 4-5 days of PEM. No more since. That's the most improvement I have had, and it is a lot. My energy is still low and all my dreaded symptoms reappear when I Have stress and or lack of sleep.

I am trying to go back to work before winter, so I started walking or biking (16 km/h) for about 50 minutes, about 5 times per week. After 6-7 weeks of that and it's going fairly well, but not perfect, I figure I have to do more if I want to be able to do my 12 hour long day when I work. So I am adding a short session to the gym to the walk, 4-5 times a week.

But, and it's a big " but ", my main symptom these days is muscle weakness in all my body, even my hand, mouth, feet, everywhere. Mostly the legs, of course, they have the biggest muscles. I used to do weight lifting when I wasn't sick, so this is something I know well. I am using my heart monitor to stay under my anaerobic threshold.

So here is my question : knowing my muscle weakness has not improved at all in the past 18 months, am I at risk of getting worse by doing gym work ? Or is this muscle weakness just something I have to learn to live with and exercise will be of benefit, because I am improving my fitness level ? I should also say I Have no pain, other than the pain from sitting too much... And I am a woman, if it matters.

Thanks for your input !
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
Gosh this is a tough question, and one that I will answer both ways, because I honestly don't know!

Did my very active lifestyle slow my downward spiral? Or did my active lifestyle make me go into a downward spiral?

Another thing to think of is you and I could be very different. Its said that if one catches the illness early enough (under 5 years) they can usually heal/recover. I've been ill for 20 years, and had muscle issues for 30 years. I also apparently have MCAS. So you might be able to add exercise easier without PEM than I could.

So I guess my advice to you is lets hope since you are sick less than 5 years, that you are on the mend. If you do add in weight lifting, go slow and easy and listen to your body. If you get the tiniest sore throat or unusual fatigue, back off and rest. And then rest some more! Also, I would probably scale back on exercise when you start to work again. No need to push your body too far and crash.

Also, I think now I would be content with just being able to be active. I know I am not capable of building muscle anymore, and it sounds like you might be having a difficult time building muscle. Try it, but be careful! Best of luck to you and please let us know how you do. We like recovery stories!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
For someone with ME the critical thing is to avoid aerobic training. Workwell has done some work on muscle conditioning. They find that aerobic training fails. That means very short workouts, primarily lying down, with lots of breaks, and close attention to assure the heart rate does not rise much.

My best guess would be low reps, huge breaks, and multiple sessions. Don't try to do it all at once. Keep rotating the muscle groups as well. Don't work the same group two days running. Take it slow, and expect slow results.

Do monitor how you are feeling in the hours and days after working out. That is when you may see long term problems developing. The rules of pacing do not go away just because you are doing strength training.

If you are heading for recovery its a difficult thing to say. Avoiding aerobic training might still be a concern until you have fully recovered.
 

Skippa

Anti-BS
Messages
841
We can only answer this for ourselves, because of course everyone is different.

In my case, if I weight train I get gradually weaker not stronger, but the strange thing is my lymph nodes under my armpits become swollen and sore, to the point that they become raised red lumps!
 

ryan31337

Senior Member
Messages
664
Location
South East, England
In my case, if I weight train I get gradually weaker not stronger, but the strange thing is my lymph nodes under my armpits become swollen and sore, to the point that they become raised red lumps!

Been there, done that, been told its 'just an in-grown hair' by the GP (what, on both sides at once, on demand!?), got the t-shirt. :rolleyes:

Not up to it these days but before I found the swimming pool was my friend. Very gradual build-up to sprints, eventually with extra drag, worked well for me. It's mostly anaerobic, long horizontal rests floating between sets, positive pressure of the water for venous return etc. I built muscle and endurance there that I couldn't obtain otherwise.
 

Skippa

Anti-BS
Messages
841
Been there, done that, been told its 'just an in-grown hair' by the GP (what, on both sides at once, on demand!?), got the t-shirt. :rolleyes:

Not up to it these days but before I found the swimming pool was my friend. Very gradual build-up to sprints, eventually with extra drag, worked well for me. It's mostly anaerobic, long horizontal rests floating between sets, positive pressure of the water for venous return etc. I built muscle and endurance there that I couldn't obtain otherwise.

It's funny that you mention long horizontal rests between strokes, I always found (back when I was more capable) that breast stroke was the only stroke I could handle. Could never get the grasp or tolerance of front crawl, preferred the more relaxed style of breast stroke.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Front crawl is a bit daunting to begin with. I broke it down by starting with a snorkel so I could forget about the breathing complexity, as well as floats to isolate arms/legs separately. Very rewarding when you nail it! Sorry @Dechi for going OT :whistle:
 

Dechi

Senior Member
Messages
1,454
Very interesting to read your stories ! @alex3619 I agree pacing must be a priority. My problem is that Imlike the gym so much I tend to get carried away. I had not gone for 4 months for this exact reason. I went 3 times and today I have light flu-like symptoms. I was doing 2 sets with 6-8 reps of each exercise, maybe 10 exercises, resting 1 minute between each or until my heart rate went back to about 60.

I think I need to do less. Maybe just 1 serie of 6 or 2 series of 4. We'll see how it goes and if I just can't, well, it will be the end of it !
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Increase your rests to three minutes maybe? Lower the weight/resistance? I used to primarily use isometric and dynamic tension (moving isometrics that include breathing) exercises because they pit my muscles against my muscles .... it was kept in proportion to my strength. Occasionally I used free weights. Even then I overdid it, but I didn't know nearly as much about pacing as I do now. I no longer exercise, but I still want to. That does not go away.
 

Skippa

Anti-BS
Messages
841
My back is what gets me first when trying to use free weights (years ago).

Was gonna suggest dynamic tension, but alex beat me to it.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@alex3619 Good idea, I'll increase my rest. What is dynamic tension ?
Dynamic tension is moving isometrics. Basically the muscle groups are pitted against each other, you keep breathing, and you move the arms/legs/body so that the muscle is working through a range rather than at one point as it is in isometric training.

Do read some of the Workwell Foundation literature, and check out some of the video presentations that have been made. There are some eye opening examples, like the ex-athlete who managed to do a lot of aerobic exercise and wound up being less fit than at the start. There are lots of threads on this here. Look for names like Snell, Stevens, VanNess etc. Their home page is here: http://www.workwellfoundation.org/
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
For someone with ME the critical thing is to avoid aerobic training. Workwell has done some work on muscle conditioning. They find that aerobic training fails. That means very short workouts, primarily lying down, with lots of breaks, and close attention to assure the heart rate does not rise much.

If you are heading for recovery its a difficult thing to say. Avoiding aerobic training might still be a concern until you have fully recovered.

Hmm, interesting. I did the 2 day CPET test in 2010, was found to be at 60% for my age, sex etc..I have always exercised aerobically, or just about always. I did take ayear off after a horrible crash in 2009.

I do weights at the gym as well, that is only in the last few years. Gyms are cheaper than going to PT all the time.

I would really love to be in a study where the CPET testing would be repeated, and my blood was taken to look at the markers that have been found to go up when exert ourselves. Looked into Dr Broderick study in the DC area. But have no money at this time, due to applying for disability, going on 3 years. Ugh!

GG
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I did the 2 day CPET test in 2010
Who with? What was the result day 1 versus day 2? A low CPET result shows a problem, the key with ME is that its worse the second day. Either can be indicative of disability. However if the result was the same both days then the conclusions about exercise might be different.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Who with? What was the result day 1 versus day 2? A low CPET result shows a problem, the key with ME is that its worse the second day. Either can be indicative of disability. However if the result was the same both days then the conclusions about exercise might be different.

@alex3619

Betsy Keller, PhD
Professor, Dept of Exercise and Sports Science
Ithaca College, NY

Part of the conclusion: (The patient) "low Maximum aerobic capacity would require him to work at 60% of his Maximum effort to perform many job-related activities. Thus, he must accomplish this work largely via anaerobic energy metabolism, resulting in early onset fatigue. Consequently, his ability to perform such activities is limited and results in excessive fatigue in response to normal activities of daily living. " All the words in the Parentheses are in italics.

Not sure of how to report Day 1 vs 2? I have a table of Numbers for Test 1, day 1? Not sure.

Heart rate at AT=139bpm

Would be willing to share this 5 page document, eventually.
 

Dechi

Senior Member
Messages
1,454
@*GG* If your AT is 139, how does this fit with the usual formula recommended for calculating it, ie : (220- your age) x 60% ? It seems a lot higher than what I would expect. My AT with this formula is 103 and I allow myself up to 120.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
@*GG* If your AT is 139, how does this fit with the usual formula recommended for calculating it, ie : (220- your age) x 60% ? It seems a lot higher than what I would expect. My AT with this formula is 103 and I allow myself up to 120.

Well, that was back in 2010, when I was 40 YO. So 220-40 is 180. 180*0.6 is 108. So quit a bit off, it seems. I have heard that is just a rough estimate, and perhaps I am a Statistical outlier? Who knows, why I would love to be in another study, and be tested again!

@Dechi @alex3619

GG
 

Dechi

Senior Member
Messages
1,454
@*GG* they out your AT at 77% ! Good to know that it can be more than 60% with that disease. At 77%, mine would be 132, which would explain why I can go over 120 sometimes when I bike and not crash. Maybe I should increase my AT. I was afraid to do so until now. I'll see what I'll do. Baby steps !