Something is not right

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Something is not right

Postby BFSBurger on November 29th, 2012, 4:11 pm

Well this is morphing into something I did not expect.

Over the last 4 days I have become more and more fatigued. My whole body to the bone. Weakness without any exertion. I haven't gone anywhere or done anything.

My thighs are burning and aching with weakness through the entire muscles, and its beginning to spread down my legs. My muscle spasms are sporadic at most. This has transformed into something that feels like its taking over my body. Literally. I can not sit still in one position for very long before the burning and weakness increases to a higher intensity. Moving or repositioning seems to give me minor, temporary relief until it begins to ebb back again ...

I can't describe the feeling. Its a feeling of muscular debilitation. Its only from the thighs downwards. So far. And it is making me unable to function. I had to go lay down for an hour and all that did was intensify it.

I can tell my body is fatigued beyond belief ... because I start to immediately fall asleep even though its 4pm ... and as I do, my night time symptoms kick in and i get this washing of goosebumps and fatigue over my head and neck.

Something is horribly wrong. This feels almost identical to when I had mononucleosis several years ago. Identical in every way. My eyes are sunken in with dark circles because of the fatigue. Yet I haven't done anything strenuous at all. This is an infection. A cancer. Or something else.

My body is telling me so.

I am almost to the point that I am going to go to the emergency room.
How I resolved my BFS within 1 year of onset:

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Re: Something is not right

Postby SuziQ on November 29th, 2012, 4:31 pm

BFSBurger wrote:Well this is morphing into something I did not expect.

Over the last 4 days I have become more and more fatigued. My whole body to the bone. Weakness without any exertion. I haven't gone anywhere or done anything.

My thighs are burning and aching with weakness through the entire muscles, and its beginning to spread down my legs. My muscle spasms are sporadic at most. This has transformed into something that feels like its taking over my body. Literally. I can not sit still in one position for very long before the burning and weakness increases to a higher intensity. Moving or repositioning seems to give me minor, temporary relief until it begins to ebb back again ...

I can't describe the feeling. Its a feeling of muscular debilitation. Its only from the thighs downwards. So far. And it is making me unable to function. I had to go lay down for an hour and all that did was intensify it.

I can tell my body is fatigued beyond belief ... because I start to immediately fall asleep even though its 4pm ... and as I do, my night time symptoms kick in and i get this washing of goosebumps and fatigue over my head and neck.

Something is horribly wrong. This feels almost identical to when I had mononucleosis several years ago. Identical in every way. My eyes are sunken in with dark circles because of the fatigue. Yet I haven't done anything strenuous at all. This is an infection. A cancer. Or something else.

My body is telling me so.

I am almost to the point that I am going to go to the emergency room.


ok, well, we've certainly seen this countless times before. I've lived it and survived it, myself.

You can try the emergency room, but generally I don't recommend it. Unless you are immediately dying, they aren't going to do anything besides refer you to a neurologist. That will leave you frustrated and exhausted. The only thing in YOUR particular case that might prompt me to think otherwise is consideration of Lyme co-infections, such as Babesiosis. We've admitted a few folks with that, and it can be exceedingly nasty. Here in RI, we test for it often, because our doctors are well acquainted with Lyme and co-infections. This is not necessarily true of other geographic areas, so if you haven't been tested, you may want to ask.

Otherwise, it sounds like you're in a bad flare, probably precipitated by lack of exercise, change of season, perhaps a viral infection or any number of things.

I'm sure others will be along to add their support.
Blessings,
Sue
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Re: Something is not right

Postby mwagner on November 29th, 2012, 4:33 pm

I would see a doctor asap. While we love to attribute our symptoms to BFS, we are susceptible to other things as well. It is cold/flu season, and you may be sick. You likened this to mono, and perhaps it is Mono. Or you may be anemic. The possibilities are endless, and this may not be related to BFS at all. So, please go take care of yourself.

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Re: Something is not right

Postby BFSBurger on November 29th, 2012, 4:45 pm

This was a gradual progression. The thighs began aching several (14) days ago for a few minutes. I've read the stories here and am aware of nearly all the symptoms people have listed. So ignored the aching and figured it was my turn to go to the next stage, but this isnt anything I have read about.

The problem is this is bodywide fatigue now. Deep fatigue to my core. I can feel it. This is something I am not familiar with pertaining to BFS.

I dont believe I"ve come down with something new. This feels like the next stage of whatever is going on inside me. I did stop the antibiotics 4 days ago, and I know they have anti-inflammatory effects, so I expected something may flare after stopping them, but this feels more like something is being allowed to run rampant inside me.

Babesiosis .... i have avoided the lyme doctors since I found mostly quacks and scammers in the LLMD scene unfortunately. So I haven't been checked for coinfections, and my infectious disease doctor seemed to only be aware of Lyme.

I was tested for mono reactivation several months ago when something similar to this hit me. It was negative. This feels like an infection now.

Yes - it feels like inflammation. Crazy intense inflammation.

Yes the Doxy is wearing off. I always felt the doxy was hiding my true symptoms while I was on it. Maybe it will calm down after the initial inflammation period after the doxy.

I guess this is my first official freak out ..... welcome me to the club?
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Re: Something is not right

Postby garym on November 29th, 2012, 11:57 pm

I suffered from extreme fatigue for the first couple of years or so.....that said, as SuziQ points out, with your lyme, it could be something else. Take that away and it sounds exactly like bfs. it is one of the most worrisome sxs i had, and led to much anxiety on my part, but it eventually faded away.

Hang in there,
Gary
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Re: Something is not right

Postby MarioMangler on November 30th, 2012, 2:15 am

BFSBurger-

First off, before you read this post, know that I am your friend. We have exchanged emails, we know where one another are coming from, and I have total respect for you and your desire to get to the cause of what is causing your BFS. Just keep that in mind because you probably aren't going to like what I am about to say to you. But believe me, I am really just trying to help.

Okay, that being said...

Here is what I see from you when I read your posts.

DAY 1: I have been reading and reading and reading and here is what could be causing my symptoms! All you have to do is start doing X. I am going to try it.
DAY 2: I have been reading and reading and reading and here is what could also be causing my symptoms! I have started a new program, I will let you know how it works.
DAY 3: I have been reading and reading and reading and here is what I think is going on now! I have started 9 different multivitamins and a new exercise program. I will let you know how it works.
DAY 4: I have been reading and reading and reading and this is what is causing our problems! I stopped the vitamins and tried this drug. I will let you know how it works.
DAY 5: I tried Gatorade! It fixed everything! Try Gatorade!
DAY 6: Gatorade doesn't work. Now I'm dying.

And so on.

Now I know this is an exaggeration, but man, you have really got to lighten up. You are far too new to BFS and far too obsessive about finding a cure for it RIGHT NOW. And I really don't know how to say this any other way but this. does. not. work. BFS and obsession are like the Gatekeeper and the Keymaster from the movie Ghostbusters. They have to be kept away from one another at all costs. And unfortunately I know this is going to be difficult for you because I know you are a very proactive, very aggressive, very assertive type of person. But believe me. If you keep up at the pace you are going you are just going to wear yourself out. Which, apparently, you already have.

I know you read all the posts from the veterans, and you read our advice, and what you read every time is "we give up." You seem to think that not fighting BFS and not seeking a cure for it is giving up. But that is not giving up. In fact it is the furthest thing from giving up. It just so happens that "not thinking about BFS" happens to be the best treatment for BFS. It is a time honored fact and anyone who has been fighting this long enough will attest to that. And by not thinking about it, I mean DON'T THINK ABOUT IT. I mean stay off the internet altogether for 2 weeks and don't read any websites, and just work on relaxing and doing something else. Easier said than done, I know, but you will learn to do it eventually. And it really does help.

Now unfortunately, I know enough about you to know that this is going to be difficult for you. You just don't have the personality type who is going to be able to ignore BFS for a while. You are just far too proactive for that. And maybe a little too curious too, but I can't really fault you for that. It is perfectly natural for a person to be curious about what is going on with them.

But the endless reading and testing and researching and theorizing, that has just got to stop. Just take it from me, I am saying this for your own good. What you have done to yourself these past few weeks is sent your entire nervous system into overdrive. And it is going to take a while for it to come back down. That is all you have done to yourself and believe me, I have been there before. In fact I just did it to myself a couple of weeks ago. And then last winter too. And then the April before that. Believe me, even the best of us have our setbacks and our overstimulated times. They are just phases you need to learn to recognize and learn how to deal with.

And again, I can't emphasize this enough. I seem to say it in every thread, each year, and it never seems to register with anyone. But BFS symptoms are ALWAYS worse during the cold and flu season. That's just the way that it works with our systems. Go check through the archives, you will see that it happens every year.

In short, my only advice to you is to back off. You are not doing yourself any favors by thinking about this and reading about it so much. All you are going to do is overstimulate your system even more. And no that is not giving up. That is "being smart" and "being proactive" and "looking out for yourself." As I have said before in my posts, sometimes the only winning move in BFS is not to play at all. Don't give your body any more stress chemicals to feed off than it already has. Go do something else for the next couple of weeks.

As for me, my BFS symptoms have personally been very nasty lately. That's why I am about to take a 3-4 month vacation from this board. But keep in mind that my symptoms have been exactly like yours lately, and you are not alone. People often go through this kind of stuff at the beginning of their experience, or in the winter months. You just have to learn to be nice to your body this time of year, and stop overanalyzing everything weird that might be going on in your body. Trust me, in four months you will be dealing with something else and you will barely even remember this phase.

And with that, I wish you the best, and I take my leave. I will be back in a couple of months, and when I get back I hope to see how much better you are. :D

-Mario
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1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Something is not right

Postby BFSBurger on November 30th, 2012, 7:30 am

MarioMangler wrote:Here is what I see from you when I read your posts.

DAY 1: I have been reading and reading and reading and here is what could be causing my symptoms! All you have to do is start doing X. I am going to try it.
DAY 2: I have been reading and reading and reading and here is what could also be causing my symptoms! I have started a new program, I will let you know how it works.
DAY 3: I have been reading and reading and reading and here is what I think is going on now! I have started 9 different multivitamins and a new exercise program. I will let you know how it works.
DAY 4: I have been reading and reading and reading and this is what is causing our problems! I stopped the vitamins and tried this drug. I will let you know how it works.
DAY 5: I tried Gatorade! It fixed everything! Try Gatorade!
DAY 6: Gatorade doesn't work. Now I'm dying.


Its actually really sad that this is all you've gleaned from my posts. I knew someone would minimize what I've written into something absurd sounding like that. I have presented every single "theory" with a disclaimer that it may or may not be the solution. I have written paragraphs stating that these are "just theories" and that they may "give insights" to someone out there who "happens upon the thread" one day. Apparently you've chosen to ignore all those paragraphs of text, and instead try and make me look like a total idiot. I wrote those statements intermingled with everything else so that I would never have to read comments like the one above, or write a response like this one.

If you're going to quote me, include everything. Not just the part that makes me sound ridiculous. And while you're making ignorant, simple minded generalizations of my posts, I am receiving PM's from people thanking me and asking me to continue posting such things. It's because of them that I put myself out there and risk idiotic comments like the one above.

I have also stated over and over: "Even if this isn't the cause, or a solution, the worst that could happen is that you are improving your nutrition, or your lifestyle".

Apparently you glossed over that, too.

This researching doesn't harm me like it harms others. I have told you that countless times. I guess you don't believe me. What I am doing is not making me less mentally healthy. You may be projecting your own personal weaknesses onto what I am doing. Doing this research makes me feel *better*. All of my posts are on neutral topics like cholesterol, Gatorade, Mitochondrial Dysfunction, etc for a reason. They're harmless, and they're possibly related to our symptoms. I never claim they are cures. I never say this is it. There is a significant amount of thought going into my posts. Wasted time I see.

The day that you figure out the cause of BFS, is the day can mock me for posting possible theories. It's as simple as that.

I actually was having an outstanding day yesterday because I saw how dangerously low my Cholesterol level is, and how people with low cholesterol have the same symptoms I have. Whether or not it was the solution to my BFS I was about to embark on a new, healthy endeavour to get my good cholesterol significantly higher, and thereby improve my overall health. What is wrong with that? Whats the worst someone could learn from that post? That cholesterol can be too low? And what is wrong with improving someone's health knowledge? Your comments make zero sense.

I was having a good day. Then i was doubled over in pain. I didn't recall these sensations being BFS related. And you need to understand that I need to be on alert right now. I have taken drugs that have caused development of Sarcoidosis (google Edmond McNack) Lymphoma, and have actually killed some people 8 months after taking them. As a result I do need a level of awareness of my body, versus an "ignorance is bliss" mentality. However I never project that onto people here. I'm fully aware of anxiety levels of people here and I go out of my way to respect that by never posting anything that might upset or worry anyone. I was hoping someone would notice that, too.

As for Gatorade... once again you weren't paying any attention. After initial posts, I have stated ad nauseum that it isn't a cure, but an effective symptom alleviator for many. Use the search tool and you'll see several others who agree with that. Using Gatorade as an example to make me sound like an idiot was unfair and does not cater to accuracy. I still drink it every day, and my twitching is still down 90% since I started. Have you seen me complain about twitching in the last 4 weeks? I would never stop it, (any time soon) for fear of what might happen. So its not a source of humor or embarrassment for me at all.

I may just stop trying to post helpful topics if even smart folks like you gloss over the point of why they're there. If you don't believe me when I say they help me, then that's your perogative/prerogative. But please respect me when I say you're incorrect.

BFSB
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viewtopic.php?f=3&t=19128
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Re: Something is not right

Postby BFSBurger on November 30th, 2012, 9:42 am

There's one other thing i want to say here. While you and others have resigned yourselves to believing that it's a waste of time because BFS is nothing more than your high anxiety or possibly some mystery bug, I will always call that theory BS. Something is wrong with our bodies. Symptoms like these don't happen without DEFINED pathogens causing DEFINED damage to the body. That's a medical fact. And if that fact is the proper premise, then the only proper response is to say there is a solution out there, somewhere. The only difference between perfect health and BFS symptoms is that nobody has identified the cause of this medical problem, and a treatment for it yet. That means an answer is out there somewhere, even if it takes 50 more years of medical advancement to find it. Since a cause, and an effective treatment *are* possible, I think its ridiculous to just give up and stop looking. A mentality of futility is the biggest enemy of progress.

Because this is an unknown syndrome, this forum should be *saturated* with theories, and solutions, and people posting medical journal articles. Sometimes I wonder if any of you have read any other health sites with mysterious causes. Everybody is tossing ideas out, toying with experiments, trying new things, and reporting back. This is the only forum I've ever been on that tells people to go lay in bed and chant "Its just BFS. Its just BFS". I don't believe the ideas have to be scary. None of the stuff I post is scary. Its all peculiar or interesting or possibly helpful. But the very nature of an unexplained syndrome with several possible causes BEGS the activity of asking questions and playing with ideas. There's a forum on "Symptom Management" here that's a virtual ghost town because the mantra of the veterans is "Nothing helps". And that's fine.

But maybe you just haven't looked hard enough. Do you feel you have? Well ... here's an example addressing that: Were any of you aware that there was a new study out showing Statin users had BFS symptoms and it wasn't because of drug toxicity but because their cholesterol was too low? Were any of you even aware that cholesterol can *be* too low? That it can cause BFS-like symptoms? I'd say none of you knew that. Including me. To just throw your hands up and pretend that you know everything there is to know, is silly. There is more information out there than any one person could find. That means continually looking (assuming you're uplifted in the process, like I am) is warranted. And so what if i enjoy trying to find it? Tossing out harmless ideas based on scientific fact shouldn't be discouraged. I put everything into one thread so nobody would be a d*ck and call me out like this. I didnt want to saturate the forums with tons of threads. I made 1 thread and figured I'd keep to myself so those that wanted to read, could. But the best laid schemes of mice and men ...
Last edited by BFSBurger on November 30th, 2012, 9:54 am, edited 1 time in total.
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Re: Something is not right

Postby acct on November 30th, 2012, 9:46 am

BFSB,

I think you are taking Mario's post the wrong way. He wasn't mocking or attacking you. He is trying to help you through his experience. I'm not attacking you either, so no need to go down that road. I'm just trying to clear up the situation with Mario. At the end of the day, we all have to come to peace with this situation in our own way and time. Obviously yours is through trying to find an answer and researching. We've all been there, though not many as thoroughly or as knowledgable as you. Just know that the best case scenario is not knowing because that means that it is benign. My opinion is it is likely psychosomatic and not organic in nature. I also acknowledge that everyone's is not the same and may be caused by different things. You begin to heal mentally when you stop caring about what causes it and stop thinking about it all of the time. I'm not sure how to speed that process up for anyone so i don't offer advice on that.
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Re: Something is not right

Postby garym on November 30th, 2012, 9:47 am

BFSBurger, I truly believe you completely missed the point Mario was trying to make. I, like you, in the beginning was offended when someone tried to tell me to stop looking for a cure/cause and to shift my focus away from bfs.....I was much to proactive for that and just knew I would find the "cure" for this condition. Personally, I encourage you to research to your heart's content, but Mario is making a very important point and that is by shifting your focus away from bfs to something else really does help you get your life back. I would suggest that you work on getting your life back to normal and getting control of the fear associated with this condition, and then get to researching.....but that is just my opinion and you are welcome to take it for what it is worth. Just know that this is a board of respect and Mario taking his time to write the above post to you shows a great deal of respect that he holds for you....think about that for minute.

Hope your fatigue improves and hang in there.

gary
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Re: Something is not right

Postby BFSBurger on November 30th, 2012, 10:04 am

Maybe he should have omitted the part I quoted. Read it again. I don't see respect in that at all.

Even with the disclaimer before it.

I will repeat what I said above. I am dealing with having taken drugs that have killed people 8 months after taking them. I personally can't afford to sit back and focus on something else when my body starts to degrade. I've lost 20lbs in the last two months. I now have pain. Any other condition on earth - when pain sets in - you are supposed to go to the ER. That's a known fact. You dont get in bed and chant "Its just BFS. Its just BFS".

Because my situation is unique, i personally *need* to be aware of what is going on with me, and stay proactive. As I said above, please google Edmond McNack and read the 2nd item in the search results. He has the same beginning to my story. The end of his story isn't good.

I was on the phone with him for 3 hours last night. He said everything I describe sounds like his early stages. Look where he ended up by not doing anything. 26 surgeries and two hip replacements.

Clearly my situation is unique to others here. But there's SOMETHING common in that we all have bodywide fasciculations. That means there is something we all share. If I need to keep staying on top of things to avoid a serious outcome, and i end up running across something that might help someone here? I feel the urgency to post it. That's my only motivation.

While I appreciate Mario's desire to "help me help myself", I am able to differentiate between anxiety and ER-worthy pain. Especially in the context of taking drugs which have killed people.

That being said I got this email from Anthony Brink last week. One of the head researchers and attorneys in HIV medicine in Africa:

From: Anthony Brink [mailto:[email protected]]
Sent: Monday, November 26, 2012 2:10 AM
To: 'Kevin'
Subject: RE: Attention: Anthony Brink

Dear Kevin

I printed it out and read it carefully.

Let me tell you what you already know.

You have been poisoned.

I hope you eventually turn around.

A legal colleague took a month’s course of AZT and 3TC, spread over two because it made him violently ill, refused any more, and then begin sinking, until he was dead 8 months later.

Google Hayman Particulars of Claim.

We couldn’t get to trial for several bitter practical reasons.

Along with two others, I’d like to post your report on my site, stripped of all identifying particulars.

As a red light to anyone else contemplating and researching PEP.

What do you think?

Best

A

-----

So there are a lot of reasons why I research and seek answers right now. Time may be of the essence for me. If I find something in the process which might help people here (similar symptoms often have similar causes), then I want the freedom to post it. That's all im saying.
How I resolved my BFS within 1 year of onset:

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Re: Something is not right

Postby SuziQ on November 30th, 2012, 10:06 am

BFSBurger wrote:
MarioMangler wrote:Here is what I see from you when I read your posts.

DAY 1: I have been reading and reading and reading and here is what could be causing my symptoms! All you have to do is start doing X. I am going to try it.
DAY 2: I have been reading and reading and reading and here is what could also be causing my symptoms! I have started a new program, I will let you know how it works.
DAY 3: I have been reading and reading and reading and here is what I think is going on now! I have started 9 different multivitamins and a new exercise program. I will let you know how it works.
DAY 4: I have been reading and reading and reading and this is what is causing our problems! I stopped the vitamins and tried this drug. I will let you know how it works.
DAY 5: I tried Gatorade! It fixed everything! Try Gatorade!
DAY 6: Gatorade doesn't work. Now I'm dying.


Its actually really sad that this is all you've gleaned from my posts. I knew someone would minimize what I've written into something absurd sounding like that. I have presented every single "theory" with a disclaimer that it may or may not be the solution. I have written paragraphs stating that these are "just theories" and that they may "give insights" to someone out there who "happens upon the thread" one day. Apparently you've chosen to ignore all those paragraphs of text, and instead try and make me look like a total idiot. I wrote those statements intermingled with everything else so that I would never have to read comments like the one above, or write a response like this one.

If you're going to quote me, include everything. Not just the part that makes me sound ridiculous. And while you're making ignorant, simple minded generalizations of my posts, I am receiving PM's from people thanking me and asking me to continue posting such things. It's because of them that I put myself out there and risk idiotic comments like the one above.

I have also stated over and over: "Even if this isn't the cause, or a solution, the worst that could happen is that you are improving your nutrition, or your lifestyle".

Apparently you glossed over that, too.

This researching doesn't harm me like it harms others. I have told you that countless times. I guess you don't believe me. What I am doing is not making me less mentally healthy. You may be projecting your own personal weaknesses onto what I am doing. Doing this research makes me feel *better*. All of my posts are on neutral topics like cholesterol, Gatorade, Mitochondrial Dysfunction, etc for a reason. They're harmless, and they're possibly related to our symptoms. I never claim they are cures. I never say this is it. There is a significant amount of thought going into my posts. Wasted time I see.

The day that you figure out the cause of BFS, is the day can mock me for posting possible theories. It's as simple as that.

I actually was having an outstanding day yesterday because I saw how dangerously low my Cholesterol level is, and how people with low cholesterol have the same symptoms I have. Whether or not it was the solution to my BFS I was about to embark on a new, healthy endeavour to get my good cholesterol significantly higher, and thereby improve my overall health. What is wrong with that? Whats the worst someone could learn from that post? That cholesterol can be too low? And what is wrong with improving someone's health knowledge? Your comments make zero sense.

I was having a good day. Then i was doubled over in pain. I didn't recall these sensations being BFS related. And you need to understand that I need to be on alert right now. I have taken drugs that have caused development of Sarcoidosis (google Edmond McNack) Lymphoma, and have actually killed some people 8 months after taking them. As a result I do need a level of awareness of my body, versus an "ignorance is bliss" mentality. However I never project that onto people here. I'm fully aware of anxiety levels of people here and I go out of my way to respect that by never posting anything that might upset or worry anyone. I was hoping someone would notice that, too.

As for Gatorade... once again you weren't paying any attention. After initial posts, I have stated ad nauseum that it isn't a cure, but an effective symptom alleviator for many. Use the search tool and you'll see several others who agree with that. Using Gatorade as an example to make me sound like an idiot was unfair and does not cater to accuracy. I still drink it every day, and my twitching is still down 90% since I started. Have you seen me complain about twitching in the last 4 weeks? I would never stop it, (any time soon) for fear of what might happen. So its not a source of humor or embarrassment for me at all.

I may just stop trying to post helpful topics if even smart folks like you gloss over the point of why they're there. If you don't believe me when I say they help me, then that's your perogative/prerogative. But please respect me when I say you're incorrect.

BFSB


Mario went out of his way to say that he meant no disrespect. He is a well-seasoned, experienced veteran on this forum and has endured many years of this condition, himself.

Perhaps you will finally be the one to get to the root cause of your symptoms and be cured of all that ails you. I hope and pray for your sake that you do!

But please understand, we have seen this, countless times, throughout the years. There have been MANY like you, who have done exhaustive research and pursued all the various angles one is inclined to chase after. I'm sure miraculous cures can be discovered this way, so I'm not faulting your gritty, relentless resolve. It's just that, in the end, more people than-not have surrendered, and just admitted that their efforts were a fruitless waste of time; and that they wished they had focused their energy on just enjoying their lives.

I'm not saying this will be you, but there have been enough folks like you, that we have legitimate concern for your well-being. All of us here take a different approach, and Mario's is one of "tough love," which is often a most necessary and productive method. Don't make the mistake of "skimming" past the "love" part, and only seeing the "tough," in Mario's message. He has just seen this pattern repeat itself, too many times.

If you were an addictions counselor and you saw the telltale signs of someone about to fall into an alcohol binge, you would naturally take some sort of action and try to prevent them from making an unhealthy choice. Your experience would tell you what to do, and how to proceed.

Our experience on this forum has shown us that most people who go the path of doing research and investigation end up regretting it, and ultimately getting a lot less symptomatic relief over the long haul. If you are the exception to that, then good for you, but we still need to do our due diligence in pointing out the potential pitfalls, based on all that we've seen here, before.

We are all in this together, and will look forward to the day when you come on here and have found a cure. But if instead, you find yourself ultimately surrendering to BFS and embracing Mario's perspective, we will still be here to support you in whatever way you need. That's what this is all about, after all.

Blessings,
Sue
Be careful about reading health books. You may die of a misprint.
Mark Twain
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Re: Something is not right

Postby jerry2 on December 1st, 2012, 7:47 am

Man, you are even worse then me. And I talk way to much here (not any more lately though). From my exerience, if you talk to much, nobody reads you any more. I can not read your posts any more. You just make hypothesis one after the other, every day something new.

Tell you what. Do take some time with one hyphotesis and wait for 2-3 weeks. If you find something to improve yourself, do share with us. But the way you are posting, taking my yearly posts in 2 months is... well, unbelievable. I thruly think most people will start skiping your posts as they did mine.

I am also simmilar to you, I want to find a solution to problems, I am a programmer, I want to find a buy in my body. After 14 months I am no better and I am no closer to know what is wrong with me. I just got so exhausted at searching I let it go for now.

I know you will not take this with best intentions, but they are. I do know how you feel though. I am like a christmass tree every day now, so many twitches, hotspots, pain, buzzing. But I am just numb (not only in hands!) in my mind, I can not think about it any more. I do feel it, I recognise it and I let it go.
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Re: Something is not right

Postby BFSBurger on December 1st, 2012, 11:55 am

I understand the BFS mentality of "Do nothing, ask nothing, go to your bedroom and tell yourself its just BFS".

For someone who just has muscle spasms, maybe some cramping, and a little bit of exercise intolerance for 8+ months with clean EMG ? I agree. They need to work on anxiety control.

Sit back and take a chill pill.

I wholeheartedly disagree that those who experience pain, debilitating fatigue, 18lbs of weight loss, chills, crawling sensations, facial and tongue tremors due to sheer weakness at night, and generalized weakness with no activity should just "relax and stop trying to find the cause"

(me).

It is a medical fact that certain conditions must be treated early for good prognosis.

You are all entitled to do as you see fit.

And while I just had spasms, I was fully relaxed and having an enjoyable time trying to see if there was a cause out there. It wasn't damaging. It wasn't upsetting. I enjoyed it.

I don't agree that it can only lead to heartache. Even with these symptoms, if In fact if I exhausted all possible causes, and got the necessary tests, and all was well, then I would have "Relief". Not heartache.

My freak out had to do with basic understanding of BFS, and the awareness that my symptoms were progressing outside that realm.

There is a significant difference between irrational paranoia powered by reading the internet too much ... and concern over symptoms that don't seem BFS related.

What I have learned from this thread is that i will never come to this forum again and express my fears or concerns, during a severe episode.

Because instead of support, I will receive lectures that I talk too much, and make a fool of myself by posting possible solutions, only to later say "Im dying".

I dont consider that support, and I dont share the mentality of this forum that people should ignore symptoms if they start to advance past basic muscle spasms, cramping, and minor sensory stuff.

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

viewtopic.php?f=3&t=19128
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Re: Something is not right

Postby volfan on December 1st, 2012, 1:31 pm

the more I read and think about your symptoms, the more I wonder if you have BFS at all. Perhaps you are truly in a whole different "category" than the rest of us which is why we might struggle to put ourselves in your shoes. Is there a board out there that has people more in line with what you are suffering from? If so, you might want to check it out. Either way, good luck to you as you try to find relief and hopefully a cure for the things that are making life difficult. Peace...Vicki
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Re: Something is not right

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