All You Runners (and Ex-Runners) Out There

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All You Runners (and Ex-Runners) Out There

Postby muppetdog on December 26th, 2013, 4:13 pm

So, before all this happened to me, I was really into running; it's one of the things I miss most about my former self. It seems every time I try to get back into an easy (really easy) workout and cardio program, I tend to go downhill. I am one of the people that tend to suffer from: vibrations, random aches, shaky/weak muscles, twitching (of course), sleep problems, parethisea, neuropathy-type symptoms, and easy muscle fatigueability. This is just the short list.

So, any of you out there that are in the same boat and use to be runners, or have overcome your illness to the point of getting back into a normal running routine, drop me a PM; I would love to talk some recover to running strategies with you. Any help would be great. Also, if you know of any members who were able to get back into running, let me know. Maybe I can contact them and see what they did.

I have been going at this for over 2 years now and still can't get a hold on the exercise thing.

Ok, happy holidays. Hope all is well with you guys out there.

MD
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Re: All You Runners (and Ex-Runners) Out There

Postby veryworried123 on December 26th, 2013, 5:50 pm

Yes I used to be an active runner and fairly elite athlete
Keep in mind this was back when i played div 1

I stated running long distances about 15 years ago and while I don't have all the experiences and symptoms you have I know what your talking about

My naturopath seems to think this is a combination if anxitey, stress and poor liver function
Keep in mind i have high billirubin

He has put me on a combo on things
Beginning with

Spanish black root
Mag vitamin d calcium liquid
Some liver formula

Now he has moved me to getting rid of yeast and metals

I can't say how much it had helped but might be something to look into

Mind you I still twitch non *beep* stop

I also found hot yoga and massage helped me as well as the hot tub


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Re: All You Runners (and Ex-Runners) Out There

Postby muppetdog on December 26th, 2013, 6:16 pm

What is the deal with people on this board with high billirubin. I also have slightly high billirubin, but was under a lamp as a baby for it. My levels are really just slightly over the norm. I was telling emmie.s about it - she also has high billirubin. I am starting to think that it's probably not a cause of anything, but that it's pretty common in the general population. Anyway, none of my doctors were ever that worried about it, and from the reading I have done, its pretty benign and not at all an indication of liver function - more of a red blood cell thing. But in any case benign unless really, really high.

Ok, not to totally derail this thread, lets get back on topic :)

veryworried - Have you been able to get back into running? Have you had any problems?
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Re: All You Runners (and Ex-Runners) Out There

Postby veryworried123 on December 27th, 2013, 3:26 pm

I think there may be more to the high billirubin than we think but obviously can't prove that

I was told that high billirubin by itself is not dangerous only if it's in coordination with another abnormal result or ad you stated if it's very high

Mine is at 38 or 34 with normal being under 20 according to the place I go

What is your biggest issues with getting back to running?
Take me through what happens? Is it soreness, cramps?
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Re: All You Runners (and Ex-Runners) Out There

Postby muppetdog on December 27th, 2013, 3:53 pm

Lets see. When I get back into anything physical, it seems after a couple days I just get so run down I just have to stop. I start to get pretty weak and shaky after I do a minimal workout. I mean, I use to be able to bang out 6 miles just for fun to clear my head, you know. It just seems like my muscles don't repair themselves properly. Its almost like a malnourished feeling. Or that feeling you get after you did some speed work running and you are just tired and shaky.

Like now, I have started a new program. I just finished finals in school (I decided to go back to school because it seems like my old career has to be put on hold till I get a bit stronger, health wise) and am using the time to try to add some physical stuff back into my life. I do about 20min of yoga one day and then cycle on the recumbent bike at a low setting and about 65rpms for 20min on alternating days. Sometimes after that I just get so weak and shaky, it's like my day is over and I just have to veg out. The other day I cycled and about and hour after that, it felt like I had lifted weights for 2 hours. Strange stuff. I just can't get get over the hump.

Of course I twitch and buzz a lot and sometimes have random nerve-type aches that migrate and sometimes tingling or burning in parts of my legs or hands. But, these don't seem to be effected by exercise. I have not found exercise to increase twitching at all.

The funny thing is. I live in Colorado at about 7500ft, but when I went to visit a friend in CA this last June/July, I started walking and was able to start running again. I would start with walking for 5min and running for 1min, and was able to build up eventually to doing that for up to 5 or 6 miles. I even did some really long bike rides. My legs would burn and hurt like hell after, but it seemed like just a nights sleep would get rid of that. I have a Fitbit step counter, and at that time I was doing like 10,000 steps a day. the only problem was I was having a lot of neuropathy type stuff during that time. My legs would feel like they were sunburned and prickly, pins and needles and some numbness. They would even be kind of numb when I went out for a run/walk but surprisingly would kind of get better half way through it. I ended up going back to Colorado and was kind of able to keep it up for a while, even doing some light weight lifting in the gym. It eventually fell apart thought, I went through a phase of really bad fatigue and symptoms and kind of just stopped. After that, school started and I just let the notion go.

This all really sucks for me, because before all this happened, running was one of my favorite things in the world. I loved to just get out, put on the headphones, just go explore places and chill out. Now its more of a Pay to Play type thing.

I am not sure I don't just need to push through and see what happens, but some days I just feel like crap, twitchy buzzing, fatigue, tired, weird crap... you know.

So that is briefly what is going on. I am trying to find someone with kind of the same story so I can just blueprint them.

Thanks.
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Re: All You Runners (and Ex-Runners) Out There

Postby veryworried123 on December 27th, 2013, 5:05 pm

So I don't have all the same symptoms you don't have (or not yet anyway)

When did you start getting this exercise intolerance? How much time after your bfs started? Also do you still get constant twitches? If so where? Back of legs?

I went to a sports medicine dr apparently one of the best on the Westcoast and he asked me all these questions

He began by running a max cpk and 2 rest cpks on me.
Meaning you exercise and workout full out at 90% max heart rate then an hour later go get your cpk taken. Then again get it taken 24 and 48 hrs later. This will detail your exercise intolerance, recovery time and reviale any muscular dieases.
Runners can have 500+ cpk after a long run but it should normalize under 300
He also mentioned some people had ck leaking into there muscle which was causing all these symptoms and that can be fixed apparently
That's a good first step

He also stated a few things you touched on

1. Altitude will negatively effect your running and exercise

2. You need to push through it and not let your execerise laps. Rather find a balance for your exercise work outs. He mentioned to me (I'm 36) that I'm not going to be able to do everything I used to do. I questioned this push through it advice and he stated it's that's simple you need to condition your body again

3. He also suggested massage therapy, tramuel muscle rub, an exercise schedule which includes proper rest on off days including staying off your feet and sleep. Also a magnesium vitamin d Calcium liquid

The biggest issue with me is i go for a long run and I get light headed and faint and then only thing that helps is sleep an rest. I know how you feel. I was so scared about not being able to run or play sports a that was the only thing that kept me somewhat normal

I think the blueprint defers for everyone but I would start with the cpk testing first

Have you tested your cpk already?
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Re: All You Runners (and Ex-Runners) Out There

Postby BFSBurger on December 27th, 2013, 8:18 pm

A lot (and i mean a lot) of people on this forum are endurance athletes / runners / cyclists / or have killed it in the gym for many years.

If you had to group people into certain groups here, that would be one of the most common elements represented here.

Though there are exceptions, I participate on countless health forums (in fact have run one for 13 years), and never see so many people randomly commenting that they're endurance athletes, bodybuilders, etc.

This is what lead me to the adrenal fatigue / HPA Axis dysfunction theory for BFS, which I am still convinced somehow plays a role.

Can I ask, as a side question: Did you guys used to down copious amounts of water on a daily basis? Did you avoid salts and sugars? Were you the person who had salad with no salad dressing and no salt or pepper?

Did you eat diets that were extremely protein rich and carb limited? Have you ever been the type who often ran on slight (or extreme) sleep deprivation?

Did you down redbulls and rockstars and 5 hour energies or large amounts of caffeine to make up for it?

Just curious.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: All You Runners (and Ex-Runners) Out There

Postby veryworried123 on December 27th, 2013, 10:56 pm

I didn't have the healthiest diet after I stopped playing competitively but I never hammered back red bulls

Yes I could have slept more and drank more water but not sure how much of a role that could have played

Yes I have trained hard for many years but so have millions of others people without getting bfs

In fact before bfs I never met anyone who had ongoing fasciculations and bfs
I try to explain it to people and they don't seem to get it

They ask what do you mean you have twitched for 4 months?

I feel like some kind of freak somedays
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Re: All You Runners (and Ex-Runners) Out There

Postby muppetdog on December 28th, 2013, 12:01 am

I slept awesome before all this. Never did I ever "kill it" in the gym. I did run a lot, but like very said, a lot of people do with out getting twitchy and f/ed up. I hate red bull, but drank coffee - no more than any other human around me. I ate great, no low carb crap, that always has and always will give me a headache. Besides, its really hard to run when you just eat meat and veggies, no energy. I do drink a lot of water but I also live at 7500 feet and don't want to look and feel like a mummy.

But, there was that one time, while on a class field trip, where I was bitten by some sort of spider during our visit to this experimental, top secret, laboratory. I think the spider might have been sleep deprived, over proteined, high on a Rock Star/Monster *beep*, and had probably been "killing it at the gym" just before our encounter.
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Re: All You Runners (and Ex-Runners) Out There

Postby BFSBurger on December 28th, 2013, 4:03 am

The additional questions I asked were just my own curiosities.

While a lot of people here disagree on specific causes, one thing we all agree on is that we have stressed out our bodies, our nerves, and our systems in general. Even the non athletes on this forum are dealing with some form of stress on the system. The cause can be different, but I am 1,0000000% convinced the high number of runners, cyclists, and endurance trainers on this site is not a coincidence. Exercise is another form of stress. And there is a very fine line between exercising for short term damage resulting in days of rest and repair, versus exercise that slowly tears away at your adrenal, hormonal, steroid, nervous system over long periods of time. Just because others don't twitch after years of endurance training doesn't mean its not a factor, or even the very cause, for you. Each person responds differently to identical environments. Genetic switches, predispositions, other underlying factors, etc. I was the guy who avoided salts and sugars, drank copious amounts of plain water instead of Gatorade, and depleted my system of important sugars, sodium, and electrolytes over a very long period of time, while simultaneously overexerting myself 150% numerous times per week.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: All You Runners (and Ex-Runners) Out There

Postby veryworried123 on December 28th, 2013, 12:26 pm

Have any of you guys experienced myoclonic jerks on a regular basis or have any of you guys ever had sleep parathesia

Also I keep searching but I don't find too many people on the site that have actually hear their BFS for a long period of time do you guys know of anyone who successfully eliminated their BFS

My family doctor told me to stop searching because we haven't found an answer so what makes you think that you guys are going to find an answer to how this all started. Just let it twitch she says

Easy for her to say...I twitch 1000 a day on te back of my legs
I've also been very surprised by the amount of doctors that have never even heard of bfs

I went to one dr and he said "what's that stand for"

Frustrating

Thanks
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Re: All You Runners (and Ex-Runners) Out There

Postby muppetdog on December 28th, 2013, 1:52 pm

I use to get a lot of myoclonic jerks but those have seemed to fade away. They are kind of like your buddy just snuck up behind you and poked you with a sharp pencil and you jerk away from it. Their kind of funny really. Where they are not funny is when they happen a bunch right before you go to sleep. I had one last night but other than that I really don't have many that often, any more. I think that's one of those things that goes away after you chill out.

What do you mean by sleep paresthesia? Like restless leg type symptoms: when you lay down or wake up from sleep you have buzzing crawling prickly stuff?

Barley any doctors know what BFS is because it's kind of made up. What you have is benign fasciculations. Somewhere along the way, someone tacked Syndrome onto it,then people started piling a bunch of other neuro symptoms onto it, and it has turned into its own entity."Ok, but I read it on Wikipedia" you might say. Yeah, that was written by someone that was on this board ;). Ask around, a lot of folks were never diagnosed specifically with BSF. They ether identified with others on this board that had the same symptoms, and self diagnosed; or they were told that their fasciculations were benign. What you need to know is yes you are a freak, you do twitch more then most people, and you won't die because of it. There are lot of people out there like you, you just don't know any of them. There are a lot of people on this board with strange neuro symptoms that are not going to kill them. A lot of other things can cause twitching, but 90% are benign (made up percentage for effect).

About the people on the board. I have done a ton of reading, and some just don't show up that much anymore but still twitch, some get better and that's it, some stick around and give advice after they figured out what works for them personally. New people tend to panic and go through all the stupid I have ALS phase stuff :)

The conclusion you need to come to is thus: You have something strange going on with you; it is caused by a lot of different body stressors (for me it was a gut infection in South Africa and then getting the shingles); keep thinking of good ideas as to how to eliminate symptoms, discuses them with your Dr and if they work share them on this board. You have a really good chance of it getting better or getting to the point where it is not longer a big deal. I myself am still trying for that, but my body seems to be hellbent on F**king with me :)

The best thing, in my opinion, is to find people with the same set of symptoms as you and see what they did or how they are dealing with it.

By the way, veryworried, that's really fascinating stuff about the sports medicine tests. I am going to drop you a PM to find out more about it. And I really appreciate the training advice you mentioned.
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Re: All You Runners (and Ex-Runners) Out There

Postby veryworried123 on December 28th, 2013, 2:34 pm

Sorry sleep paralysis

Meaning when you sleep or are just waking up your mind wakes up and tells your body to flip over or move or get up but you can't for a few seconds...it's like things don't work

And then it kicks in and you can move again

I googled it and apparently it's not harmful but *beep* scary
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Re: All You Runners (and Ex-Runners) Out There

Postby BFSBurger on December 28th, 2013, 5:51 pm

veryworried123 wrote:Sorry sleep paralysis

Meaning when you sleep or are just waking up your mind wakes up and tells your body to flip over or move or get up but you can't for a few seconds...it's like things don't work

And then it kicks in and you can move again

I googled it and apparently it's not harmful but *beep* scary


Yes. Second month of BFS was filled with events of Sleep Paralysis. Same general time when I would wake up and my lips were quivering with stress and tension for no reason. Later I learned that this was a sign of major night time cortisol imbalances. The cause? Not sure. The sleep paralysis usually comes when the body is at an extremely fatigued level. This can be due to inflammatory cytokine activity, cortisol dysregulation, or any number of other things resulting in major cellular fatigue on your system. The theme (as you can see) is all the same. Our bodies are taxed to an extreme.

I woke up one night and saw small beings standing next to my bed looking at me. Full-on hallucinations. I was paralyzed and unable to move my body, but awake still. There was a thundering roar coming over my hearing (common for sleep paralysis if you read up on it) and a horrible sensation of being physically "killed", squashed, pinned down, destroyed. Sleep disorders are common with BFS and several people on here I've spoken to deal with sleep apnea, night terrors, sleep paralysis, major cortisol surgest in the middle of the night, etc. My neurologist actually entered me into a sleep study when I told him about this but I never bothered to go. I knew what was happening to me and why. Just like everything else, it was something that came and went on its own.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: All You Runners (and Ex-Runners) Out There

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