Unexpected Fatigue and Weakness

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BFSDiner

Well-known member
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.
 
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.Mitra
 
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?
 
I suffered from extreme fatigue for the first couple of years or so.....that said, as LisaLM 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
 
TwitchBFS-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
 
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 ...
 
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.
 
TwitchBFS, 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
 
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 AMTo: 'Kevin'Subject: RE: Attention: Anthony BrinkDear KevinI 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?BestA-----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.
 
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.
 
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.
 
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
 
There is a reason why people on this board tell you to try to relax. I am sure that there have been many others here like that, but I just throw you 3 names: SuzyQ, Leanne and mine. Imbeareable pain, tremors, weight loss, shakyness and perceived weakness so bad that it left us enabled to do something. If I remember right, all of us were carried around in a wheelchair in hospital, unable to walk. It was bad. Really really bad. But today we can tell you that things like that CAN happen with BFS
 
I don't think you have offended anyone. Most of what you are mentioning I have or had except 18 pounds weight loss (which may or may not be related to other problems). I also had the "I am dying feeling" more times than I'd like to remember. The fact is I am still alive, so I was wrong, I wasn't dying.Forum can not comfort you if the doctors can not, if you have 101 hypothesis of what is wrong but from what I read, they are only hypothesis, you didn't find out what is wrong with you, have you? And I would be the first one to take the "maic pill" you find or some strange disease we may have. Of course you may have something else, we all could. BFS is a syndrome, not a disease, it is umbrella for many conditions. It can also be called BFS until they found you have lyme disease and then it is not BFS any more. That is why you are searching so hard, I know. Not to miss anything that can be helped.But you come to the forum and want to be calmed, but in reality you are similar personality to me, such personality is proactive and forum members can not confort such people. If one passive user comes in fear the forum can confort him, if he believes in what he hears (true or not, he can be calmed at least for a while). But you are 100% sure you have something bad and you won't believe you don't have something bad, you have done more research than most of us here, me included.How do you expect if doctors can not confort you, you and all your knowledge you gained now can not confort you, how can you think a user here saying: It seems like BFS can confort you? You start being offensive right away that how can anybody say it is BFS... We can not. I just think your symptoms are a lot like mine and others, that is all I can really say. And I can say I am sorry you are going through this and I know how you feel. I do not wish such feelings even on some bad guy, nobody deserves this sh*t. But compassion is I think the only thing we can offer.At the end of the day we really don't know what you have or what any of us has and why this happened to us, do we? That doesn't mean we can not symphatise with you. But we can not tell you anything you didn't allready read or know. That is a difference. And from what I've read you want us to tell you what is wrong with you and we just can not.You should continue to go from doctor to doctor if you have some rare disease, I know many people with rare diseases are not diagnosed for years (miserable years) and some condition can be helped. I just think you should give time in your research, finish one therapy and go to the next, every day finding something that might be your problem just mixes things up.Me and others are not your enemy. We have common enemy and we fight it day to day. Take care man!
 
Thanx Suzi. See, it is so important to see HOW bad it can be, not in order zu scare twitchers of what is probably to come, but to point out that it can be really bad and still BFS. My doctors said right away this is NOT ALS, but when my hubby brought me to ER they right away checked me for a stroke and then MS, because it looked like one if those to them. It was impossible to test for clinical weakness because my legs werde so tremoring and shaking that ot was just a terrible mess alltogether. My whole body jumped when they tried to touch me. They had no idea what it could be, gave me 2 MRI and 2 spinal taps and wanted blood from me daily for 2 weeks. In the End, it was all BFS.
 
sorry my post was not helpful. I was actually just trying to say it IS possible that not everything can be linked to BFS. I am starting to see why people leave this board...
 
Suzi ... you ddint say anything to bother me! i was just apologizing to everyone. I love tossing ideas out there. I think i'd have an orgasm if a thread I started actually resulted in myriads of posts with counter-ideas, posting of studies, exchanging of ideas etc... but alas ...
 
That's a huge source of relief too Jerry. You're right. I just want all of you to know that I appreciate every single one of you. And I know I can be .... talkative .... but ... please understand: I'm usually the guy who makes the web site. I make health web sites. I'm usually the one writing the long articles and content (sometimes hundreds of pages worth). Doing the research and reading the studies. So acting as a forum participant is a different situation altogether. I can imagine that i come across ... verbose ... sometimes. But this is how I handle things.
 

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