Unlike others in my family, I was not a yo-yoer. Being athletic when young, I maintained the same weight throughout my life, except during pregnancy when I felt like I was starving to death. (I think I ate for three+.) As I age with MS, however, I have increasing difficulty keeping weight on. Muscle mass loss, I know, is significant, despite the exercises I am able to do. (Loss of muscle strength issues w/MS began with my strong quads.) I wish there were a way to increase muscle mass for women. Testosterone with the estrogen?? Excellent topic.🌷
No to yo-yo-ing. I do IF (12:12) and aim to eat 1g of protein for every kg of body weight at minimum per day. Diet is high in protein and very low in carbs - though not strictly keto by design. Weight lift 5 days per week and workout every day to retain strength and actively build muscle. Have seen significant muscle gains since starting this 8 months ago. (And I am lost-menopausal)
I'm concerned about the people reporting their main exercise is walking, running, biking, yoga, pilates, etc., yet worry about sarcopenia.
Those are _great_ exercise modalities, especially walking. However, the best way to _gain_ muscle is enough protein and enough resistance (even healthy young men using anabolic steroids need these!!!!); given how often fatigue is a problem for pwms, prioritizing resistance training might be more helpful, unless it's contraindicated.
I am not at all qualified to say what people can or should do. MS fatigue can be "normal" fatigue -- you tire easily, but recover the same as healthy people. But it can sometimes be post-exertional malaise (PEM), as in ME/CFS -- you crash after exertion and do not recover well, and may actually have reduced baseline function. That's possibly due to mitochondrial dysfunction. Exercising can be very risky with PEM.
Lifting can raise my body temperature enough for a pseudoexacerbation (Uhthoff's phenomenon); my doctors said it was safe to ignore if the symptoms didn't bother me, so I do. It goes away after a few minutes, but it was very unnerving at first. I think it might be difficult to tell the difference between a pseudoexacerbation and PEM in many people.
I've found that doctors and even physical therapists can be a source of misinformation about exercise in general and especially strength training. Many seem to think lifting per se is risky, especially for women, and unfortunately a lot of popular lifting programs (eg Crossfit) _are_ risky. And like I mentioned earlier, I was not impressed by the lifting programs I saw in most MS studies -- I wouldn't expect that to improve _anyone's_ quality of life very much.
If there is a clinical overview of exercise for PwMS that also takes into account serious exercise science, I would love to see it.
I've lost 14kg during the previous year, when I switched to Wahls protocol. It was good for me because before that, I was overweight. Now my BMI is within normal range. I feel a lot better when eating protein and vegetables, instead of pizza, pastry or sweets.
I have no idea whether this impacted my muscle mass.
Keeping my muscles strength and mass has become more and more difficult aspite 1hr yoga twice a week altertively with 1 hr physio twice a week, and walking when the weather is fine , more and more gifficult to keep the distance, maximum 2 km today, with more and more pain afterwards and with walking poles since a year, to keep the balace and to help with the dropping foot...
in addition everything got worse with the Covid, and the increase of the pain after walking or exercising.
I would be very interested by a guide of useful supplements and diet advices to keep the muscle strength.
I have a SPMS, , ms declared at -25 y-old, , secondary since ca 12years, was reslly active until 2 years ago...-.
Since 18 months I have been given Metformin though I don’t have any diabetis(200 mg at night, which might have increased the muscles loss (?)
my weight is 48-49 kg since always(!.)and try to keep it stable as I first lost of 5 kg after the start of Metformin and after
This is interesting. I am definitely in the yo-yoing category. I’ve also tried MANY different MS diets and non-MS diets (eg Atkins) over the years.
I’ve lost some muscle definition but I think it’s down to a relapse rather than my diets ... the relapse has affected neurone(?) response so I’ve lost muscle on my left side arm and leg. This has shown up in a full body composition analysis recently at my gym where the % muscle mass differs left to right.
This disabling effect has reduced gym activity over the years and subsequently also reduced left side muscle. I am in the upward trajectory following this relapse and have returned to the gym and now actively trying to rebuild muscle.
I’m unsure of the part my various diets have played, or the impact of menopause (I’m 53), or the impact of fatigue. It’s a complex concern for me.
What I do know is that being 20kg over my ideal weight is not a good position to be in, and is way too much to be carrying on my MS legs. But what part are Mirabegron, HRT, Siponimod, BP drugs playing in the yoyo peak situations.
To worry about the best diet for me, MS and muscle-mass is yet another drain on my wellbeing.
I used to yo-yo diet up to diagnosis Sept 2020. Since then I am more conscious of health benefits of weight bearing exercise; walks & I eat more healthy foods
Dr Giovannoni, Your article doesn’t give any idea what a good muscle % is - could you give a range? As mentioned earlier ‘magic’ scales are easy to buy to help keep an eye on this (even if they are slightly differently calibrated) so it would be good to have a target range.
I have an ongoing discussion with my neurologist about how much resistance training helps with MS. (He encourages it! He just says the studies don't show it specifically helps anywhere near as much as aerobic conditioning. I looked at the studies and as a somewhat serious lifter, my main reaction was "those are terrible programs; I wouldn't expect that to help at all.")
My main issues with the programs I saw in studies were a) not full-body b) not compound exercises and c) unlikely to use sufficient weight. "Sufficient" just means "enough to encourage a muscle growth," and that will depend for everyone; my personal baseline is being able to deadlift at least 3x3x70kg on the regular, which isn't bad for any woman in her late forties. My main symptom is fatigue, so I do the biggest/heaviest lift in the morning, and then other exercises hours apart for pacing.
I'm in the process of losing the weight I gained when symptoms first appeared, which is hardly the first time I've dieted, but I don't think it qualifies as yo-yoing because of the lifting -- I am not losing much if any muscle mass.
I don't know if I have sarcopenia. I've spent most of my life bedbound. I'm working on my weight now, and I'm very close to a healthy weight for my height. I don't eat meat, so I've been trying to get healthy protein from plant sources.
I try to avoid a degree of MS related Sarcopenia by using an exercise bike daily. Sadly there’s not a lot I can do about aging. What is galling as a retired Army fit officer, is that it will never be enough...and I basically should try harder. Regards weight gain and loss, I have maintained my weight which has obviously increased but stabilised at a very much heavier weight than I’d like to be, but have no problem maintaining it with intermittent fasting. I keep a regular eye on heart rate, B/P and urinalysis for glucose and have a great GP who gives me an annual check...who always looks surprised at the rather acceptable results; so will look for any other ideas in the comments.
I’ve never done yo-yo dieting but have always been at the bottom end of healthy with my BMI. I was a middle distance runner until I was 40 and started with MS. I do have osteoporosis which will obviously affect BMI. I do resistance work in the gym 3 times a week and play golf twice a week but due to a hiatus hernia avoid upper body weights. Before HSCT I wouldn’t have been able to do the exercise that I do now. I scored 0 for sarcopenia.
I’ve never been assessed for sarcopenia or muscle mass. I’m currently on HRT aand have recently been able to increase the muscle mass in my legs whilst doing rehab training for a sports injury.
I can't seem to ever lose weight unless I'm ill, in which case I regain all of the weight I lost as soon as I recover. I seem to be gradually getting weight at a rate of maybe a kg a year or slightly less.
I score 1 on that scale as I've had two falls in the past year. I think about sarcopenia a lot as I'm over 40 and just want to be able to keep running for as long as I can. I am marathon training at the moment and trying to ensure I get protein in every meal. I don't eat meat or dairy so it requires some careful meal planning. I got a takeaway dinner last night as I didn't feel like cooking after my heating engineer had left (hurrah for working heating though!) but it was a great rice box with lots of sweet sesame tofu and brown rice (I also ordered a side of greens). My regular fish subscription gives the fishermen time off in January so I guess I'm doing Veganuary by default.
I have body analyser scales and have noticed the drop in muscle %. At my peak of fitness a few years ago it was 40%, now it's more like 38. If I could just drop the few kg I've gained I think it would be 40 again.
Oh they are just a slightly enhanced version of normal bathroom scales. They work by sending a small current through your body so it helps to have wet feet (I hop on after I shower). With mine, I had to set it up by telling it my age, sex and height. From there it uses various assumptions to calculate fat %, muscle %, water % and BMI. Gyms tend to have more sophisticated versions.
Unlike others in my family, I was not a yo-yoer. Being athletic when young, I maintained the same weight throughout my life, except during pregnancy when I felt like I was starving to death. (I think I ate for three+.) As I age with MS, however, I have increasing difficulty keeping weight on. Muscle mass loss, I know, is significant, despite the exercises I am able to do. (Loss of muscle strength issues w/MS began with my strong quads.) I wish there were a way to increase muscle mass for women. Testosterone with the estrogen?? Excellent topic.🌷
No to yo-yo-ing. I do IF (12:12) and aim to eat 1g of protein for every kg of body weight at minimum per day. Diet is high in protein and very low in carbs - though not strictly keto by design. Weight lift 5 days per week and workout every day to retain strength and actively build muscle. Have seen significant muscle gains since starting this 8 months ago. (And I am lost-menopausal)
I've never had a muscle mass assessment. I score 6 points the SARC-F scale.
This is generally not something that is done in neurology, but as part of metabolic medicine which is in the realm of general practice, o
endocrinology or sports medicine. There are many ways of doing it.
Thanks. I didn't know that. Guess I just need to do more pilates.
I'm concerned about the people reporting their main exercise is walking, running, biking, yoga, pilates, etc., yet worry about sarcopenia.
Those are _great_ exercise modalities, especially walking. However, the best way to _gain_ muscle is enough protein and enough resistance (even healthy young men using anabolic steroids need these!!!!); given how often fatigue is a problem for pwms, prioritizing resistance training might be more helpful, unless it's contraindicated.
I am not at all qualified to say what people can or should do. MS fatigue can be "normal" fatigue -- you tire easily, but recover the same as healthy people. But it can sometimes be post-exertional malaise (PEM), as in ME/CFS -- you crash after exertion and do not recover well, and may actually have reduced baseline function. That's possibly due to mitochondrial dysfunction. Exercising can be very risky with PEM.
Lifting can raise my body temperature enough for a pseudoexacerbation (Uhthoff's phenomenon); my doctors said it was safe to ignore if the symptoms didn't bother me, so I do. It goes away after a few minutes, but it was very unnerving at first. I think it might be difficult to tell the difference between a pseudoexacerbation and PEM in many people.
I've found that doctors and even physical therapists can be a source of misinformation about exercise in general and especially strength training. Many seem to think lifting per se is risky, especially for women, and unfortunately a lot of popular lifting programs (eg Crossfit) _are_ risky. And like I mentioned earlier, I was not impressed by the lifting programs I saw in most MS studies -- I wouldn't expect that to improve _anyone's_ quality of life very much.
If there is a clinical overview of exercise for PwMS that also takes into account serious exercise science, I would love to see it.
Hi Rachael. I completely understand what you are saying. Maybe some of the following links might help (especially MSARD Journal study)...
https://www.pennmedicine.org/updates/blogs/neuroscience-blog/2017/may/multiple-sclerosis-and-exercise#:~:text=Diana%3A%20The%20best%20MS%20exercises,done%20at%20a%20moderate%20level.
https://my.clevelandclinic.org/departments/neurological/depts/multiple-sclerosis/ms-approaches/exercise-in-ms
https://multiplesclerosisnewstoday.com/expert-voices/2022/07/13/expert-voices-effective-safe-exercise-ms/
https://www.msard-journal.com/article/S2211-0348(22)00596-X/fulltext
https://www.sciencedirect.com/science/article/abs/pii/S1440244021002140
Thank you!
I've lost 14kg during the previous year, when I switched to Wahls protocol. It was good for me because before that, I was overweight. Now my BMI is within normal range. I feel a lot better when eating protein and vegetables, instead of pizza, pastry or sweets.
I have no idea whether this impacted my muscle mass.
I am quite thin and never had weight issues, but I definitely feel the same. More carbs mean less energy for me
Keeping my muscles strength and mass has become more and more difficult aspite 1hr yoga twice a week altertively with 1 hr physio twice a week, and walking when the weather is fine , more and more gifficult to keep the distance, maximum 2 km today, with more and more pain afterwards and with walking poles since a year, to keep the balace and to help with the dropping foot...
in addition everything got worse with the Covid, and the increase of the pain after walking or exercising.
I would be very interested by a guide of useful supplements and diet advices to keep the muscle strength.
I have a SPMS, , ms declared at -25 y-old, , secondary since ca 12years, was reslly active until 2 years ago...-.
Since 18 months I have been given Metformin though I don’t have any diabetis(200 mg at night, which might have increased the muscles loss (?)
my weight is 48-49 kg since always(!.)and try to keep it stable as I first lost of 5 kg after the start of Metformin and after
the covid lock down ...
Irene( 57 y-old, Spms)
This is interesting. I am definitely in the yo-yoing category. I’ve also tried MANY different MS diets and non-MS diets (eg Atkins) over the years.
I’ve lost some muscle definition but I think it’s down to a relapse rather than my diets ... the relapse has affected neurone(?) response so I’ve lost muscle on my left side arm and leg. This has shown up in a full body composition analysis recently at my gym where the % muscle mass differs left to right.
This disabling effect has reduced gym activity over the years and subsequently also reduced left side muscle. I am in the upward trajectory following this relapse and have returned to the gym and now actively trying to rebuild muscle.
I’m unsure of the part my various diets have played, or the impact of menopause (I’m 53), or the impact of fatigue. It’s a complex concern for me.
What I do know is that being 20kg over my ideal weight is not a good position to be in, and is way too much to be carrying on my MS legs. But what part are Mirabegron, HRT, Siponimod, BP drugs playing in the yoyo peak situations.
To worry about the best diet for me, MS and muscle-mass is yet another drain on my wellbeing.
I used to yo-yo diet up to diagnosis Sept 2020. Since then I am more conscious of health benefits of weight bearing exercise; walks & I eat more healthy foods
Muscle mass assessment as in DEXA scanning?
Would love to hear more about HRT (TRT) actually. Some people like Jeff Bezos seem to be doing well with this.
Yes. We should be managing muscle health in the same way we do bone health.
Dr Giovannoni, Your article doesn’t give any idea what a good muscle % is - could you give a range? As mentioned earlier ‘magic’ scales are easy to buy to help keep an eye on this (even if they are slightly differently calibrated) so it would be good to have a target range.
https://support.withings.com/hc/en-us/articles/218500778-Body-What-are-the-normal-ranges-for-body-composition
I have an ongoing discussion with my neurologist about how much resistance training helps with MS. (He encourages it! He just says the studies don't show it specifically helps anywhere near as much as aerobic conditioning. I looked at the studies and as a somewhat serious lifter, my main reaction was "those are terrible programs; I wouldn't expect that to help at all.")
My main issues with the programs I saw in studies were a) not full-body b) not compound exercises and c) unlikely to use sufficient weight. "Sufficient" just means "enough to encourage a muscle growth," and that will depend for everyone; my personal baseline is being able to deadlift at least 3x3x70kg on the regular, which isn't bad for any woman in her late forties. My main symptom is fatigue, so I do the biggest/heaviest lift in the morning, and then other exercises hours apart for pacing.
I'm in the process of losing the weight I gained when symptoms first appeared, which is hardly the first time I've dieted, but I don't think it qualifies as yo-yoing because of the lifting -- I am not losing much if any muscle mass.
I don't know if I have sarcopenia. I've spent most of my life bedbound. I'm working on my weight now, and I'm very close to a healthy weight for my height. I don't eat meat, so I've been trying to get healthy protein from plant sources.
I try to avoid a degree of MS related Sarcopenia by using an exercise bike daily. Sadly there’s not a lot I can do about aging. What is galling as a retired Army fit officer, is that it will never be enough...and I basically should try harder. Regards weight gain and loss, I have maintained my weight which has obviously increased but stabilised at a very much heavier weight than I’d like to be, but have no problem maintaining it with intermittent fasting. I keep a regular eye on heart rate, B/P and urinalysis for glucose and have a great GP who gives me an annual check...who always looks surprised at the rather acceptable results; so will look for any other ideas in the comments.
I’ve never done yo-yo dieting but have always been at the bottom end of healthy with my BMI. I was a middle distance runner until I was 40 and started with MS. I do have osteoporosis which will obviously affect BMI. I do resistance work in the gym 3 times a week and play golf twice a week but due to a hiatus hernia avoid upper body weights. Before HSCT I wouldn’t have been able to do the exercise that I do now. I scored 0 for sarcopenia.
I’ve never been assessed for sarcopenia or muscle mass. I’m currently on HRT aand have recently been able to increase the muscle mass in my legs whilst doing rehab training for a sports injury.
I can't seem to ever lose weight unless I'm ill, in which case I regain all of the weight I lost as soon as I recover. I seem to be gradually getting weight at a rate of maybe a kg a year or slightly less.
I score 1 on that scale as I've had two falls in the past year. I think about sarcopenia a lot as I'm over 40 and just want to be able to keep running for as long as I can. I am marathon training at the moment and trying to ensure I get protein in every meal. I don't eat meat or dairy so it requires some careful meal planning. I got a takeaway dinner last night as I didn't feel like cooking after my heating engineer had left (hurrah for working heating though!) but it was a great rice box with lots of sweet sesame tofu and brown rice (I also ordered a side of greens). My regular fish subscription gives the fishermen time off in January so I guess I'm doing Veganuary by default.
I have body analyser scales and have noticed the drop in muscle %. At my peak of fitness a few years ago it was 40%, now it's more like 38. If I could just drop the few kg I've gained I think it would be 40 again.
Interesting. What are body analysis scales. Where, how, what? Thanks.
Oh they are just a slightly enhanced version of normal bathroom scales. They work by sending a small current through your body so it helps to have wet feet (I hop on after I shower). With mine, I had to set it up by telling it my age, sex and height. From there it uses various assumptions to calculate fat %, muscle %, water % and BMI. Gyms tend to have more sophisticated versions.
I’m way past Gyms so I’ll have a look. Thanks :)
https://www.pnas.org/doi/abs/10.1073/pnas.2315857121