Muscle atrophy

Can anyone out there answer a question for me, please?  I've had MSi for a few years, at least, now; I have had varrious symptoms - fatigue, balance, brain fog & so on.  Apart from the muscle fatigue, most of the aforementioned are not really prominent.  I still work; I work full-time and do a demanding job.  Exersise is something that I can't avoid.  So her's the question: why am I suffering continuing and relentless muscle loss - mainly glutes and to a lesser extent quads but not really the rest of my body?

If I were given a magic pill tomorrow that took away my MS, I'd still be struggling as much as I was yesterday: due to muscle loss.  I see some MSers with shrunken, emaciated legs but then they are not able to excercie those muscles.  Have I got something else as well?

Hm,  might it have something to do with your gate?  Not using the muscles in the same way as you used to  yet not realizing brecause you are able to get around?    Wonder if there are some range of motion exercises to cover the use of these groups that you could do lying down or even with the help of a friend.   A Physical Therapist might be able to help.  Perhaps you could get a consult from you doc for at least a series of appointement for teaching you some preventative moves?

Hope someone else has something to offer.

Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
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Not an answer, but a few personal observations and speculations (and I do not have MSi).

I've had a lot of shortening of my left quad, that has been resistant to mobility movements, especially the upper part (attatching to the pelvis). Stretching only causing increased resistance, not going anywhere. Similar in the hip flexor. Lots of post exercise tenerness low response.

My question and speculation is would it possibly be due to old injuries or overtraining? As per the theories here: http://www.cpnhelp.org/how_chlamydia_pneumoniae_< , white blood cells get infected with Cpn and thus then transfer to body sites afflicted by inflammationi (from injury, overtraining etc).

You say you have a demanding job. This is clearly tough in this respect, as presumably not being able to put in rest days (as one would do to recover from heavier exercise sessions). A demanding job (not knowing the actual demands for you) is often involving the big muscles, like quads and glutes. 

My symptoms in this area have improved recently (after over two years of treatment and over 300 "pulsing" days -- don't give up too early). More mobility in the quad and hip flexor, less post exercise soreness, and more.

Borrelia/Cpni arthritis: joint, skin, eye, CNSi, respiratory, UG involvment; fatigue. Borrelia Elisa&WB IgGi, and CPn IgG and IgA pos, HLA-B27 neg. CAPi 5/9/2010 -> 3/2016 2017: some signs and symptoms returning, Borrelia?

I am not sure if it is this but I understand that being on antibioticsi actually slows down protein synthesis, protein helps build muscle so perhaps it could be that... 

Diagnosed with progressive MSi at 18, was told would be in wheel chair with in 1 year, looked after myself and don't have too many attacks now, I am just tired all the time, started CAPi on 1st Sep 2012.

Well, if you have a pot belly (I know you have read the book)and wasting legs, read this: http://en.wikipedia.org/wiki/Cushing's_syndrome<.......................Sarah

A Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

What a coincidence!  I just asked my doctor this same question because regardless of excercise, my muscles are shrinking and skin is rippling (especially arms)  This started last year and has become so bad, I feel like I need to wear sleeves all the time.

Now, I'm almost 50 and haven't been able to excercise like I used to, for 4 years now.  So, I would have chalked this up to the aging process except for the fact that I was in better than average physical and muscular condition until I got sick.  I was one of those people that LOVED excercise and did 1 - 2 hours on the treadmill everyday and weight training at least 4 days/wk and was even a personal trainer for awhile.  So, I knew that I couldn't possibly be losing muscle this fast, especially since I was still doing what yoga and weight training I could.

Ok, time to make a long story short...my doctor confirmed that I was indeed losing muscle and said I needed to start using Whey protien.  WOW did I feel stupid!!  I should have known that but didn't think of it outside the bodybuilding world.

Then I read Mandylee's post here about ABXi slowing down protien synthesis and that made since with the muscle loss and need for whey protien!  Just got some from Vitacost, it's by MRM and is the only one I found that's lower in calories.  I can't say it's my favorite thing to drink but it's only 4 ounces, so I just drink it down like a shot!Wink  I'll update later as to the effectiveness but hopefully this info helps!

Lori

FM/CFSi/IBSi/Reynaud's/suspected Lupus and many neuroi problems, disabling muscle & joint pain and weakness.

Started CAPi 4/10/13 - Doxyi 100mg bidi/Clarithromycin 500mg bidi/NACi 1800MG per day/Flagyli pulse 500mg bid once per month,All supplementsi<

I think the problem is in innervation, this is neurological problem. This infection can cause demyelinating process. No innervation, no muscle, bad innervation, bad muscle ... that is my experience, my left calf was like buccaneer's wooden leg...

On CAPs:12/01/2005 till March 2013; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension">i... 

Thank you everybody that has posted and made a contribution to this thread.

My muscle loss has been ongoing long, long before I'd even heard of CAPi.  As a type 2 diabetic I had heard that muscle loss can be due to extremely poor glycemic control; the only thing is, my sugar control is not bad.

I have heard that muscle atrophy can be caused by extreme drinking.  The only thing is this: these days, I am becoming a disgrace to my gender; I am down to about four units of alcohol a week.  I have recently exclaimed that "This MS is serriously affecting my drinking!"  Once I am fully on CAP I thing my drinking days will be truely numbered.

There is a famous or even infamous question, often asked by women.  That question is "Does my ass look fat in these pants?"  Due to this muscle atrophy, I able to say "No" in my case.  I used to look at women who possessed thick thighs and large glutes with a mixture of admiration and lust  ...   now I look upon them with pure envy!

I was chatting to a doctor friend about this issue yesterday.  I discussed Cushing's syndrome.  I certainly don't have the clasic puffy moon-faced look.  On my next blood test, along with a HbA1c, I shall ask for some sort of endocrine screening, including cortisol.

Regarding any past over-training ... I am one of those people that used to say "Sod the planet, take the car!"

A physiotherapist once said to me that I ought to be eating red meat - beef steaks - to build muscle.  There are so many and varried things said about diet; don't eat red meat; avoid all dairy products and so on.  I shall certainly consider the whey thingy.  I used some creatine after my short session in the pool today.  I was sometimes using GABA before bed but as I now take charcoal, I've had to knock this on the head.

I'd like to think, and I am hoping, that if I kill of all them tiny CPni critters then they'll stop eating away at my bum.  Trouble is, I am nearly 14 stone and my muscles are struggling big-time to lift and control that weight  ...  so I need to do something about this now, pretty dammed quick.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

I wasn’t really being serious about Cushing’s Syndrome!  On a slightly different tack, though, maybe you would do better losing a bit of weight (running for cover now!).....................Sarah

A Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Ah  ...  so Sarah is "running for cover now"!  mmm  That is the Sarah that said that she couldn't run any more?  You lie like a cheap Japanese watch! lol  Anyway, if you are running I certainly won't be able to run after you; the next time I'll be running is after all them little CPns are gone.  These days I sort of hobble along.

In terms of loosing weight, I used to rejoice at the diminishing nunbers on the scales but I have grown (or shrunk) to realise that weight loss does not neccessarily equal fat loss; weight loss can mean muscle loss.

I suppose the way I look at it is this: I am doing every single thing I can to overcome and deal with all my difficulties - including being part of and extremely rare but growing bunch of people on CAPi.  If I can transfer the weight I have from they front to the back, that'd be a great start.  Also, I spent time yesterday & today doing exercise in the pool  ... trouble is, my legs are phyically spent now.  I have taken creatine and glutamine.  Having listened to advice given on her; tomorrow I shall buy some whey protine drink.

Once again, thank you all for all your helpful advice and comment.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Oh, likening me to a cheap Japanese watch!  Actually I wear one while I am working and it keeps very good time!  It cost fifteen pounds............................Sarah

A Journey through Light and Shadow

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Superguy,

My husbands a body builder and he eats around every two-three hours and eats protein every meal, probably 3 of those meals are protein powder with raw eggs, udo's oil, oats, protein powder and flavouring, he is always full and hates eating all the time but does it to grow muscle, He eats heaps of meats around 250g of protein a serve which is a lot but he's a big guy with his rice and veggies. Also eats heaps of nuts, I don't know what you eat but it may be none of that and something due to your condition.... 

Diagnosed with progressive MSi at 18, was told would be in wheel chair with in 1 year, looked after myself and don't have too many attacks now, I am just tired all the time, started CAPi on 1st Sep 2012.

Hi All!

This is an old thread of mine, resurrected.  Although the issue has not been mentioned for a long while, the problem has not gone away - in fact the problem has got steadily worse.  I am in the possition now whereby I am using all my strength to lift myself up a step.  Many muscles are affected but the biggest muscle in my body is most affected by far - gluteus maximus.  To a lesser extent, my core muscles and  quadriceps too.

Ok; here's what I am thinking: Human Growth Factor has been used in MSi trials for remyelinationi.  Remyelination would be good ... but straight muscle growth is what I need.  If I am unable to resolve this pretty soon, this will be the downfall of me: literally.

I went to see a GP about 16 months ago along these lines.  When I suggested HGH she looked up the price and exclaimed a long "W - H - A - T!!!  I maybe wrong, but i think that translates to a "No way José!"

Any views on buying this stuff myself?  Am I wasting my time writing to her and trying to insist on an appointmen with an endocrinologist?

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Hi

I messaged you recently about me having exactly the same problem.

I looked up with interest about the growth hormone, but after looking it up, i doubt very much i would be able to get hold of as not been diagnosed with anything.

However i did come across Deer antler velvet, which helps in building muscle.

Have you heard of this? I am going to give it ago.  Probably a load of baloney, but will try anything to fix this.

Good luck on finding a way of getting growth hormone.  Keep us informed.

Kirsty,  Since you are interested in the Deer Antler velvet, have you considered finding a chinese herbalist?   I seem to recall it is from that pharmacopia.  Chinese herbs, unlike western herbology are taken as combination formulations to create balance and can be tweeked for your specific presentation of symptomatology.    It is an indepth study of creating balance and harmony within one's system and it is less one size fits all epressions of the same symptoms.    Not to deminish some of the western herbals they are more commonly used for acute situations.   And you are looking at your chronic imbalalnces.

It has been some time since I have looked at the discipline of chinese herbology and have a number of texts but really I see you are in the UK and you may be able to find a Chinese Heralist.

Wishing you much success in however you handle your quest.   Louise

 

 

 

 

 

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Hey Kirsty ...

Please accept my prefuse apologies for not responding to your private message.

I am sorry that you too are suffering with similar muscle loss to that which I am.  Growth hormone is expensive and is associated with sports drug abuse etc.  Generally, I think that if you have PPMSi, that is seen as reason enough not to have to treat you; GPs think that they don't have to.

You mention Deer Antler velvet and then go on to mention "load of baloney".  I dismiss nothing.  The thing is, you can only try so much at one time.

Anyway, growth hormone is expensive (and can be purchase over the internet) ... but  Deer Antler velvet is expensive too.

Anyway, I have currently started taking GABA again ... though I don't expect that to work miracles.  I'll get over this pulse and try to get a plan together.

Sweet dreams!

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Hey all. I wanted to chime in since I too experience the dreaded leg atrophy and if anyone should be able to counteract it, it should be me since I train people for a living. 

My current belief is that inflammationi, particularly from cytokinesi, is causing the problems we are having. My guess as to why it affects our legs more than our upper body is due to the fact that we have to use our legs to get around and while that should counteract the muscle wasting, in our situation, it actually uses up vital energy as well as causes even greater exhaustion which I feel leads to greater inflammation in those areas. Personally, my leg size increases and my strength and energy return when I am able to lie flat for 2 - 3 days. I've only been able to do it a few times but I felt a ton better when I was able to do it. I've also tested (or rather my PCP tested) a 6-day trial of Prednisone. It decreased my inflammation and I had two days of feeling great, followed by 2 months of weakness and muscle atrophy. My belief is that while it helped the inflammation short term, the reduction in my immunei system allowed the bacteria to have free reign and possibly even multiply, ultimately leading to a landslide of problems. If MS is not caused by bacteria, Prednisone should help. If you get worse afterwards or while on it, I believe your MS/symptoms are likely the result of bacteria.

Another confounding factor may be POTS which I won't go a lot of detail about here. POTS tends to affect the legs more so than the upper body. I am currently in the process of getting an appointment set up to get tested at Vanderbilt. I will report back when I get through testing. I was alerted to it when a test at my PCPs office showed Severe Sympathetic Predominance.

While strength training might help, it is a tightrope to walk, especially if you have to be physically active for work. If you were able to rest, doing exercises for your legs would help, but if you can't rest, it will likely only make the strength and energy issue worse.

Regarding whey protein, creatine and other supplementsi, I have found them to be of little help. I use them daily, but I don't know that they are making enough difference that I would recommend them. While they may have some benefit, they don't counteract the inflammation or energy problems and thus don't have much benefit. I haven't tried the Deer Antler Velvet since I haven't read any studies on it, but I doubt it would be of much use for the reasons stated. 

If someone is able to rest frequently, I do feel that strength training is a benefit, even if done for just 5 minutes a day, a couple days per week. However if your legs are already exhausted, I would recommend trying a period of resting them with them (and ideally your upper body) horizontal, as opposed to trying physical therapy or strength training. That's based on my own experimentation and my understanding of the effects of the bacteria. Hope this helped.

Electric muscle stimulation has helped me maintain and build back muscle.

Hi Jen,

 

I am very to happy to read this as I am using e-stim right now on my left thigh. It is so weak that I can't lift my left knee very much at all...  I hope that I can build back some muscle like you have.

Thanks so much for sharing!

 

Another fact I should mention is that protein ingestion is key to maintaining muscle mass. 25 - 40 grams per meal is perfect. Without that much protein per meal, muscle protein synthesis (MPS) is not likely to happen, or to be maintained. Simply eating that much protein will stimulate MPS even without working out or using e-stim. If you combine it with the e-stim or with strength training you will be sure to stimulate MPS to an even greater level. Lack of protein causes muscle protein breakdown (MPB). I actually suggest a reduced protein diet to those who want to decrease muscle mass such as when someone has bodyparts that are too muscular or when someone needs to drop to a lower weight class and already has low bodyfat levels. It works. Pure vegetarians or those on a long-term juicing diet are living proof. 

So if you are trying to build or maintain muscle, eat 25 - 40 grams of protein at each meal (or 3 - 6 times per day depending on your protein needs). Animal protein is the best source since it is a complete protein. Whey protein (an animal protein) was mentioned earlier and is also a very good source, especially immediately after e-stim or a strength-training workout because it both empties from the stomach faster and digests faster. 

For more information on the topic, here are two recent reviews on the topic: 

http://www.eurekalert.org/pub_releases/2014-05/uotm-afs051914.php<

http://link.springer.com/article/10.1007/s40279-014-0152-3/fulltext.html...<

Jen, which muscle stimulator do you recommend and where did you buy it? Thanks

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Hey ...

Is this one of them muscle stimulation things:

https://www.youtube.com/watch?v=JxomtZbON1A<

 

 

Cool

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Hey ...

Thank you so much for your reply and contribution - much appreciated.  All of what has been said just seems to make so much sense.  I will make an effort to amend my eating habits; at the moment, my first meal of the day tends to be lunch ... and that can be late.  I will try to forget calorie counting and go for protein.

I was at the pool earlier on this afternoon.  I was chatting to a chap.  I mentioned growth hormone and he frowned upon it.  As it happens, he too has suffered muscle loss and is suffering from osteoporosis after a past hip replacement.  I queried his disparaging views on HGH.  He explained that he was a heart surgeon and had seen many examples of heart damage in patients that had used / abused HGH.  I expressed my view that it was all a question of ballance and quantity.  By the way, I did take a whey protien shake drink with me today.

One factor that I feel that is not up for debate is quality sleep.  I think that all tissue repair & takes place during deep sleep.  A sleep that's disturbed or filled with mostly REM sleep will leave little scope for the muscle building that I need.

Even if I consume the perfect diet, there is no certainty that my system will digest it properly or that the digested nutrients will be absorbed or approprately assimilated (God, they they cars are complicated things!).

What I have done is to take note of a posting on cpnhelp about Humaworm.  I haven't bought the product but I have bought into the ideas.  I am using diatomaceous earth as a mopper and as an internal wormicide / vermicide.  I have added Black Walnut, Wormwood and Oragino to my list of supplementsi.  The way I look at it is this: when I ring a resturant and they ask me "How many will be dining, Sir?" I want to be able to say "Just me" with confidence.  If I am paying for finest rump; I want it to end up on my rump - not lining the gut of some parasite that's not even paying rent ... let alone making a contribution to the tip!

The strange thing about all this is, when things are working right, it all just seems to go like clockwork.  There have been times that I've been feeling fine ... if I stayed like that, I'm sure that all thse issues would just fade away.

Once again, thank you All for all of this very usfull advice and guidance.

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

In 2010, I purchased the "circulation booster" from a company in the UK. A couple years later, when I went back to order accessories I was informed that they could no longer ship to the US because customs wouldn't allow the device to enter the county. Today, I sent an online inquiry to the company to see if this is still the case.

The device has been rebranded "Revitive" and given a snazzy face-lift. My tried and true model resembles an over-sized hockey puck, while the ones they are now selling are very dainty and pretty. The url is: http://www.revitive.com/<. There is also an http://www.revitive.ca/<. I sent them an inquiry as well.

I got the device to help with circulation problems but the positive effect on my muscles was a surprise. I set the intensity to a comfortable level (basically as high as I can stand, which is 50) and sit for an hour while it pulses away. I can actually feel the pulses move the muscles in my thighs. I do this at least 3 times a week.

I’ve looked over the new models, and if I had to get a new one I’d get the 1X or CX. And if I did need a new one, I think I may be taking a road trip to Canada for maple syrup and Revitive. As soon as I get a response from either inquiry, I’ll post it.

Update-

Got word back from Parent company and Canadian store. Neither ships to the USA......but they will be opening an American online store later this year.Smile

 

Hi

Just to say i have been on the antler velvet for about 3 days and have had a marked improvement in both inflamation and power in my leg.  I have been able to exercise a lot more without getting the horrible burning.  So am feeling extremely happy.

Also, i tried the humaworm recently and had to stop after a week and a half because my legs for some reason reacted really badly.  Worse than i remember them.  I had prickles constantly, weakness, heaviness, numbness etc.  Once i had stopped my body got back to before.

However lots of people have had great experiences from it, so everyones different.

Best wishes

Kristy,

Maybe Humaworm is like the abxi in that you are having a die off reaction to it as well.  If that is the case, maybe you should give it the full 30 days. Thanks for the update on antler velvet though. I heard it was expensive so I'm gonna see just how much it hurts the wallet. It's good to know that you are being helped by it.  Do you typically see good results from supplementsi? I don't seem to absorb them because there are only a few I can associate with good results, and I have taken fistful after fistful of them. 

 

Julie

MSi: First sxi '93 dxi '09 no obvious relapses just steady decline since '07. Crippling fatigue, too weak to sit up for extended periods of time. Cane/walkers/electric chair inside, helicopter outside. 

Started protocol 11/16/13.  1200mg N

Please excuse my brevity but I am away from home and away from my computer so I'm using my phone.

Three cheers to you if you have found something that will strengthen and build & our whithering muscles  and reduce our fatigue.

Do please keep us updated.

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

No supplementsi dont normally do anything for me, so antler velvet was a good find.

Logging in to keep track of some of the information in this post. Thanks Jen.

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

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