Exercise/Activity

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Exercise/Activity

Postby muppetdog on August 18th, 2013, 11:55 am

Just curious about how active you all are.

Do you exercise? If you do: how much, how often and what kind?

Also, how active is your life? Sedentary or active job? Do you do a lot around the house, errands chores? Hobbies? Vacations

Just trying to get a feel for how I stand up to most on the board. I had 6 weeks where I was running/walking (5 min walk 3-4 min run) 2-3 times a week and then doing 1 circuit on the weight machines at the gym 1-2 times a week. I then had a 16 day blow out (why I don't know) and was battling a lot of fatigue, sleeping problems, twitching buzzing. I had skin burning arms and legs, feet and hands, that would wake me up at night and other stuff.

I think I am kind of coming out of it but ever since this all has started I have had a tough time keeping an active life going without ending up not feeling well. It's like my body has lost the ability to build it's self back up.

some days I have a tough time just getting out and doing stuff. I can do things, but my body just feels horrible.

Ok, thanks in advance for the data.

MD
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Re: Exercise/Activity

Postby magnetizzum on August 18th, 2013, 8:06 pm

I was very active but Ive slowed it down a lot. I liked running also. I had/have a quota of running 26miles a month on a treadmill in the form of a couple of 5k's a week. But I'd notice increased twitching at times so I would back off some days or weeks. My deltoid twitches crazy after I run. My neurologist told me I should slow down, that I am 37 now and this might be my body telling me to slow down. I mentally had a couple of words for him too but I kept them to myself! I am still running 5ks @ 23.5 minutes but I've been spacing them further apart. Like most guys I have a million hobbies but they have taken a backseat to bfs also. Scuba diving, boating, beekeeping, antique collecting, spending time with my kidz, and exercising are all things i enjoy. Trying to slow down is hard! I've tried to work out with freeweights but Im almost intolerable to what comes afterwards for 3days. I feel like this bfs is at a peak for me right now, I would like to get back to good workouts but am afraid to...
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Re: Exercise/Activity

Postby mwagner on August 19th, 2013, 12:24 pm

This just seems so like CFS to me. Look up post-exertional malaise. I was telling Terry the same thing. Of course, I am not a doctor and you have already explored this (I think).

I think a lot of us have exercise intolerance but not to this extent.

I walk or do the elliptical 3-4 times a week. My exercise level has gone down quite a bit, because I can't stand the twitching that ensues afterwards (terrible reason I know). I don't twitch much after a nice fast walk, but if I run or even do the ellipitcal my body is like a twitching storm. I hate it so much it affects how much I want to exercise. I used to work out 5 days a week and ski or hike on the 6th day, leaving only one day of rest. Granted that was a very long time ago, prior to having kids. Now, I'm lucky to get in 4 times a week for a walk.
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Re: Exercise/Activity

Postby johnnythejet on August 19th, 2013, 1:06 pm

I work in an office so no exercise there, but my level of exercise outside of work has varied greatly over my BFS career. I've had periods of working out 5-6 days per week and I've had spans where I would do almost no intentional exercise. During periods of peak exercise my twitching is typically higher after activity (based on my recollection), but I can do everything I did pre-BFS. Once I got past the mental hurdle, my symptoms have no effect on me and experience no new limits. The physical restraints on our bodies imposed by our minds can be substantial.
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Re: Exercise/Activity

Postby Arkansan on August 19th, 2013, 4:46 pm

I am fairly active, I mow the lawn at least once a week. Once to twice a week I train to box for about 45 mins to 2 hrs, and at least once a week I work out at home, I do a resistance band circuit and a few other things. I have no problems working out, afterwards my hands tremor if I have been hitting the bag or the focus mitts. Other than that I just notice that my limbs get a fine tremor after a work out. I actually have put on some muscle mass and improved my hand eye coordination recently.
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Re: Exercise/Activity

Postby TwitchyMark on August 22nd, 2013, 11:25 am

I am pretty much back to 100% as far as activity other than some limitations due to degenerative spine issues. I cycle 50-60 miles a week at a vigorous pace and do pushups, pullups and core exercises. Also have no problem with chores and projects around the house for the most part. I am unemployed right now. I figure my BFS symptoms are down to 10% of what they were back in the fall and winter when my activity level was greatly limited due to low calorie intake (dysphagia), muscle aches, fatigue, cold weather... and, of course, worry and depression. I just hope I can find a way to stay active this winter (I hate gyms). I used to ski but have fallen out of it the last couple years. Hopefully I will be employed by then. :)

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Re: Exercise/Activity

Postby muppetdog on December 26th, 2013, 6:42 pm

Thanks for all the posts, guys.
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Re: Exercise/Activity

Postby BFSBurger on December 27th, 2013, 9:01 pm

I had a period of severe, severe exercise intolerance. I took about two months off of all exercise when my BFS started because I noticed the more I used my muscles, the more they would twitch. So I decided to stop using them. This was beneficial, until it started backfiring. An inactive body eventually begins to degrade. I started having breathing issues, very tight breathing, difficulty getting deep breaths at times, muscle pain, aching, migrating stabbing aches in muscles, severe joint pain, tendon pain, sensory issues, numb limbs, etc...

So I started back working out. I would do 1 rep of every muscle group, on very light weight (we used to joke that we used the pink dumbbells) ... and then walked for 5 minutes on the treadmill, at a speed of 3.0 and incline of 5.0 .... and I would then literally collapse on the couch for at least 45 minutes with (what felt like) black circles under my eyes. Just that utterly dead, drained feeling. I felt like an old man, and would feel the perkolating and popping and wriggling of my muscles in my legs, shoulders, arms, back afterwards.

A couple hours after the workout, however, I would have a bodywide sensation of emotional, physical, and mental well-being. I felt utterly outstanding. I did not feel energetic. I just knew that something about getting my body moving, was rejuvinating me, and helping in the deepest, most important ways. 24 hours after the full body light workout, I would continue to go downhill energy-wise. My worst moment was always 24 hours after the workout. My twitching would increase up until this point, as my body was weak from the workout. After the 24 hour mark, the body begins to repair from the workout. At the 48 hour mark, I was always feeling much better. Twitching would decrease 50% at least. By the third day - this was always my best day. I was fully recovered from the granny workout, and my twitching would be at a minimum.

Strangely however ... if I went 4, 5, 6, 8, 10 days without getting back to working out, things would worsen. My muscles would begin to tighten up again. My breathing and chest would feel labored. My sleep would become very very poor (waking up with agitation, overstimulation, shaking nerves),etc. I was tense, and generally degrading back to a bad state. So I had to keep a cycle of about once-every-four-day workouts. Always full body. Always including deep breathing, and minimal aerobics. And always with a solid 2-3 days of complete rest in between. The twitching would flow like a wave, increasing after the workout, then decreasing as my body rested and recovered. Each cycle, i noticed, I would improve more and more. As long as I did not push myself too far, and rested sufficiently in between, I began to see that I was improving.

This is how I started to develop a cause-effect awareness with my BFS. I noticed that as I lacked cellular energy, my twitching would get worse. As my body recovered and was 'more strong again' my twitching would decrease. This lead me to a theory regarding cellular energy insufficiency - mitochondrial damage. I ran the gamut of theories from mitochondrial toxicities due to medications, environmental toxins, etc. Ultimately I began taking Ubiquinol 100mg, RLA, ALA, and PQQ for Mitochondrial / cellular energy support, and have been on it ever since, four days a week. I also began reading about adrenal insufficiency and HPA Axis dysfunction.

I noticed that immediately after meals containing gluten or stimulants (breads, pastas, soy, glutamine, etc) my twitching would worsen. So I stoppe eating that stuff. Likewise... while on a full Paleo diet ... I noticed I would twitch more because of the low carbs. So i added a couple mashed potatoes per day. It was amazing. As hours would pass after a meal, twitching might begin to increase, as I would begin to "tire". But then I would have an energy supplying carb meal like chicken veggies and a big mashed potato (no skin) ... my twitching would instantly reduce. So again .. cause effect. If i tired myself out, I would get worse. If I rested and supplied sufficient cellular energy, I would improve.

This theory was further verified when Dr. Rey from the Klimas Clinic (CFS Experts) did a full workup on my immune system. Instead of seeing what I was sure I would see (autoimmunity and overactive immune system), she said my immune system and hormone levels were utterly burned out. She said I must have at some point literally fried my system, and all kinds of resulting damage had ensued. This can happen from constant adrenaline, cortisone, testosterone, and immune system stressors on the body (bringing us back to adrenal insufficiency) as well as depletion of neurotransmitters like dopamine and serotonin (which are the most abundant in the gut). The steroid chemicals, stress levels, anxiety, and months of fear I had put myself through can directly damage the gut as well, which may explain why diet changes and gut healing regimen was so huge for eliminating my symptoms (along with anxiety and stress reduction).

Its interesting how its all tied together, but I truly thank everyone here for the input they gave me when I was going through all this. My energy levels seemed to improve every time I did the cyclical iteration of very light exertion, then sufficient rest. The dietary changes were unbelievably huge for symptoms, senory issues, and cramping and pains ... and stress reduction was a foundational element to it all. Without each of those three things, the other two probably wouldn't have mattered. I cant stress this enough: The type of exercise that helped me was very careful, methodical, and only to the point of "relieving tension" all over my body. I would not go past that, or I would live to regret it.

As a side note, there's several guys here who have low testosterone as a result of this. I am one of them. I dropped from an average of 700 before BFS to an average of 230. That is the Testosterone level of an 85 year old man. There's a guy on here who opted to go on testosterone replacement therapy and has told me that his debilitating flu-like fatigue immediately disappeared and hasn't returned. He is also on neurotransmitter support (dopamine, serotonin, etc catalysts). Things like 5HTP, and is seeing great results. This allllllllllllllllllllll fits in with adrenal fatigue and damage to nerves, muscles, the gut, electrolyte muscle firing action potential somethingoranothers, myelin damage, testosterone levels, cortisol levels, inflammatory immune markers, etc. Its all part of the same system.

Hope this helps some.

-BFSB-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Exercise/Activity

Postby muppetdog on December 27th, 2013, 10:55 pm

Thanks BSFB, great stuff. I am still in the process of finding my physical limits and proper diet. I also sup with Coq10 and ALA along with L glutamine and L carnitine, Vit D and a special multi. Oh, and a huge amount of EPA DHA fish oil.

How much working out can you do now? How often do you workout? How much activity can you handle in your life?

Thanks again
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Re: Exercise/Activity

Postby BFSBurger on December 28th, 2013, 4:16 am

muppetdog wrote: L glutamine and L carnitine


I was doing both of these then ran across a bunch of literature advising heavily against Glutamine for anyone with suspicions of Gluten damage, gut damage possibilities, or sensitivities to neurotoxins like MSG, soy, etc. I can't remember the details, but I decided that Glutamine and Glutamates are heavily on the "No no" list for what we've got going on. At least as per my personal research, and experience with it. I would definitely drop that. I was taking Carnitine as part of my Mitochondrial regimen, but then read about new research showing that it was the carnitine in red meat which is the true cause of the heart disease issues related to excessive red meat intake. The jury was still out on it, but after the reading, I didn't see any reason why i should continue taking it. I believe it also builds up in the system. So I dropped the Glutamine and Carnitine. Just wanted to toss that out there. I actually noticed that Glutamine made my symptoms continue. On the other hand, creatine was actually a big help at times. And it is mentioned in cellular efficiency studies as well.

How much working out can you do now? How often do you workout? How much activity can you handle in your life?


My BFS is 100% gone at this point, as long as I stick to my diet, stress, and lifestyle changes. I have zero symptoms. I have zero daily fatigue now. Zero twitching. I work out 3-4 days a week as I always did before. Almost all weights, with mild treadmill to get the heart rate up. I have never been an endurance trainer. My body could never handle it. But I definitely worked out too heavily, saturated my body with plain water (instead of Gatorade and electrolytes like I should have) for most of my life. I will say that it *seems* like I am not pushing the maximum weights I could do before. But truthfully I haven't really tested it. I know that I was working out in a way that was punishing to my body, my joints, my tendons, and my spine before. So I do about 80 to 90% of my previous max in weights, intentionally. There's a monumental difference between this exact day 1 year ago, and where I am today. I would say I am back to 100%.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Exercise/Activity

Postby muppetdog on December 28th, 2013, 1:57 pm

BSFB - cool man good do know. Can you PM me those links to the L glutamine and carnitine info. I would not mind reading those. I have not found that the Glut made me any worse. But I guess everyone is different.

Thanks again,
MD
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Re: Exercise/Activity

Postby BFSBurger on December 28th, 2013, 6:00 pm

muppetdog wrote:I have not found that the Glut made me any worse. But I guess everyone is different.


If you haven't gotten yourself to a point where your symptoms have completely stopped, its hard to know for sure that something isn't contributing to their continued presence.

Carnitine and heart disease: http://www.health.harvard.edu/blog/new- ... 1304176083
"According to this work, published online in the journal Nature Medicine, eating red meat delivers L-carnitine to bacteria that live in the human gut. These bacteria digest L-carnitine and turn it into a compound called trimethylamine-N-oxide (TMAO). In studies in mice, TMAO has been shown to cause atherosclerosis, the disease process that leads to cholesterol-clogged arteries. We know that clogged coronary arteries can lead to heart attacks."
Isnt it funny how the Gut is the central theme yet again? All these people who get so *beep* off at me for constantly bringing it up. I wasn't even expecting to see mention of the gut. Yet there it is. A bacteria in the gut is fed, which eventually leads to atheroscelrosis. Gut health is tied to everything. Period.

Regarding Glutamine: http://articles.mercola.com/sites/artic ... amine.aspx
"The glutamine is then transported to the neuron and by the enzyme glutaminase, it is converted to glutamate--the potential excitotoxin."
As I recall, there was too close of a tie between Monosodium Glutamate - a known neurotoxin, and Glutamine for my comfort zone. I just decided there was no outright benefit in taking it, and i wasn't going to play with fire either.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Exercise/Activity

Postby muppetdog on December 28th, 2013, 7:38 pm

If you haven't gotten yourself to a point where your symptoms have completely stopped, its hard to know for sure that something isn't contributing to their continued presence.


Yep, that's what I'm going for. I still think the glutamine I take has nothing to do with anything. After reading the article you gave me on it and then doing some research, I kind of determined it's worthless to take in the amount I do anyway. You get an average of 6 GRAMS of glutimine in your diet eat every day from meats and green vegetables. So the gram I take in the morning really does nothing for me.

What's funny is how much glutamine and Glutamate there is in your body. What's funnier is that monosodium glutamate is just glutemate with a salt atom tacked on (go look at the molecule) . When it comes in contact with your saliva it would form glutamate. Haha. Why do so many people think MSG is bad? Funny. I think Yuliasir was commenting on this in one of my other threads.

It sounds like glutamine only works for healing your gut (under certain circumstances) in really, really, really high doses.

I think I am going to stop taking it because it is a waste of money.

Here's a good point of view.

http://junkfoodscience.blogspot.com/2007/03/science-is-so-inconvenient-to-food.html

Thanks for the article BFSB.

MD
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Re: Exercise/Activity

Postby BFSBurger on December 29th, 2013, 2:11 pm

muppetdog wrote:Why do so many people think MSG is bad? Funny. I think Yuliasir was commenting on this in one of my other threads.


Yeah I saw her comment that it was a hoax, or old wives tale. Really strange. There are a lot of things that old school medical people call total bullsh*t which are later proven to be 100% true. Lyme Disease was one of those things. Chronic Fatigue Syndrome was something people in the medical industry all called "nonsense" for many years as well. Multiple Sclerosis is another example of a disease that most doctors called "psychosematic" or "imaginary" ... and why? Because it manifests with sensory symptoms. And Doctors, in their infinite brilliance, often ignore symptoms they can't see, touch, and test for themselves. Fibromyalgia is a perfect example of this. Doctors swore up and down for years that it was nothing more than hypochondriacs with depression. There were plenty of articles like the one you quote below, calling it nonsense. Ulcers. Until 1997 doctors and blog writers called ulcers a result of stress. A self induced condition. Then someone discovered H. Pylori Bacteria, and proved that it is the cause of ulcers. Those same doctors who called it nonsense before, are now prescribing a 14 day course of antibiotics and proton pump inhibitors, resulting in a 98% cure rate. Go figure.

These types of conditions / reactions often start off as anecdotal reports, and it takes years for the narrow minded arrogant types who think lay people are uneducated fools to realize they were wrong :) MSG has virtual mountains of reports of severe side effects in people who take it. Yet these medical folk plug their ears, close their eyes, and call it nonsense. Or psychosematic. This is unfortunately the state of the medical profession today, and why it is utterly inept at handling most diseases that don't fit within their narrow understanding of "disease".

I used to go to subway every day for lunch and would always have this debilitating migraine afterwards. Nothing made any sense. Until I realized that the Cool Ranch Doritos I was eating with the sandwich contained MSG. Try googling MSG and Migraines... get ready for a hailstorm of reports. Thats just one mild neurological symptom it can cause in people. The stuff is potent. One time an asian friend of mine packed a sandwich for me before a trip which she got from a chinese food store. Upon arrival in my destination city, I had an hour long drive to see my family. I ate the sandwich and before I arrived there, I had to pull my car over on the side of the road because i was in so much agonizing pain. My head, my eyes, i started to get nauseus. The sandwich was LOADED with msg, which is common for Chinese food.

At this point, with zero BFS symptoms anymore, I can say a major part of the process for me was avoiding anything in the "glut" family.

http://junkfoodscience.blogspot.com/2007/03/science-is-so-inconvenient-to-food.html
For every article like this, I can show probably 200 articles saying the opposite.
You have to understand something:

1) The first group says: "There is no proof that it causes problems, therefore I claim you are imagining things"
2) The second group says: "I had to pull over my car because I was in so much pain after eating MSG. Im not imagining things. Sorry you don't have a study to point to, but the onus is on you to tell me whats causing this"

Then each group writes articles. First one calling it all nonsense. Second one honestly expressing serious side effects from the stuff.
Who is right? Well in my opinion, the first group is claiming ignorance without even checking, then telling another group that they're insane.
So I consider the first group to be a bunch of annoying d*cks :)
The second group just wants an explanation. They don't care who is right or wrong. But I doubt they enjoy being called crazy.
So that's the situation.

Someone needs to do a study on a group of 400 people who ingest MSG laden foods, and report their side effects.
Then the narrow minded medical industry folks will be able to acknowledge that something is happening.
I don't know what causes me such extreme migraine and nausea pain from MSG.
Could be neurotoxicity. Could be something completely different. Bottom line is: Hundreds of thousands of people report major problems with it.
If the medical industry actually cared about patients, they would be trying to find answers. Not trying to make patients feel stupid.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Exercise/Activity

Postby muppetdog on December 29th, 2013, 2:39 pm

Yeah I guess its just one of those things, you have to go with what works.

All I was saying was the differnce between glutamic acid (Glutamate) and monosodium glutamate is just ONE sodium atom tacked onto the side. When it hits water it comes off and is now glutamic acid. And there is no way to avoid glutamic acid in your diet. It is in everything. Your body makes it.

Maybe when MSG is made now a days, it has some other impurities in it.

But go with what works.

Got to keep thinking logically. :)
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