Exploring BFS Diagnosis Solutions

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BFSDiner

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Yeah it sounds complicated doesn't it? Well did you expect anything less for a possible diagnosis for BFS? I didn't.Would like to encourage everyone to copy and paste this into google and do some reading. Don't worry, its safe, and choc full of reasons why you should modify your lifestyle to reduce stress. You wont get any health anxiety from reading it. I am very interested in what people find, and what they think about the list of symptoms associated with it.Hypothalamus Pituitary Adrenal Axis Dysfunction <-- copy pasteHere's one (note the table halfway down)Thoughts?
 
I know that Dr Teitelbaum is really big on this in his book "From Fatigued to Fantastic" and that it is a big topic in the CFS world. This guy named Dan Neuffer also talks a lot about it on his site He is not a doctor but did manage to recover from CFS/ME and thinks he has the answers. Who knows. I know that Dr Ginevra Liptan (MD) discusses it in her book "Figuring Out Fibromyalgia." She has Fibromyalgia and manged to whittle it down to nothing.Its one of the theories knocking around out there. Good post Burger.
 
Apparently there's some correlation between Adrenal function and all the hormones / steroids in your body.Therefore there's some connection between HPA Dysfunction and Neurosteroids, which directly affect the Central Nervous System, sleep cycles, food intolerances (celiac-like symptoms), and pretty much everything we experience.I realize there are a lot of "fatigue" related conditions that look at HPA Dysfunction, but for some reason I feel like we are a very targeted group for this, as a possible explanation for our woes.I can't pin down why I feel that way. Its just a hunch. From what I have seen so far however, the Adrenal issues like this don't seem to have any actual treatments to get things back in order. Maybe DHEA supplementation is key. More reading will be required.Looks like my next set of tests will be centered around HPA, Adrenals, Cortisol, DHEA, SBHG, etc, however I am doing about 90% better than I was in November, so I wonder if my numbers will be out of whack at all now.Need to find the next "acute phase" registrant on these forums who is freaking out, and talk them into getting the workup maybe :)-Burger-
 
Burger - You should find a really, really good endocrinologist to do the hormone testing. It took me 3 tries to find one that wasn't just a "by book" diabetes insulin salesman. In my, probably misguided opinion, endocrinologist have the paperwork to say their qualified, but don't really know that much about stuff other than diabetes. Lets face it, in the US, it's big business. I know you mentioned you had "lowish" testosterone and cortisol. Those, along with just about every other hormone, fluctuate a lot during the day and due to a lot of factors like fasting and, of course, stress levels. I have had all those tests and been down that road. Its fascinating to learn about but, like all the possibilities, I don't think you can read too much into without going crazy. I have read a lot of your posts and I seem to suffer from a lot of the same symptoms you did or do suffer from. There are a lot, probably like 80%, of the people on this board that are just blown out with anxiety and stress. You have stated that you are not one of those people. I am not ether. Sure, I get worried about all the strange stuff and it bothers the hell out of me that no one can give me a for sure answer, and I know that life stress helped facilitate what is currently wrong with me at this point, but I don't think anxiety is the total answer for me; and it sounds like you are the same. The whole hormone thing can open up to a lot of natural doctor guessing diagnoses. Make sure you get the facts. And when you do, share them. This is such and annoying puzzle.
 
My concern in the endocrinology world is the pseudo doctors who work at the "private clinics" offering "anti-aging" therapies. I frequent bodybuilding forums and there are several squatters there who represent these docs and encourage users who have OD'd on roids to go visit the doctor for testosterone injections, etc. These places of course take no insurance, want cash only, and charge insane amounts for office visits and products. Pure profit operations. Everyone they see "has a testosterone problem" and as long as you pay the big bucks, you can get as much injected as you like. Want to hit a level of 1,000 for the next 10 years? No problem. Then on the other end of the spectrum are the actual endocrinologists who see a guy like me (age 38) with a Testosterone level of a 90 year old (245) and say "Thats completely normal". Even though the range is 230 to 1200, and its well established that the average 38 year old is at about 800. So here you've got the opposite end of the spectrum. Doctors who for some reason refuse to acknowledge that low testosterone can cause innumerable problems systemwide in a male. They feel the risk to benefit ratio of supplementing testosterone is too great, so they poo poo anyone who isn't way below the 230 mark. Welcome to dealing with human beings. Extremes in every direction, and impossible to find someone with moderate, logical thinking. No matter what the topic is. Politics or otherwise. In any case, I need to read more about this and see if its a waste of time to pursue. I was reading that fried adrenals can take 6 months to 1 year to begin to recover, and sometimes longer. So this sounds about right.
 
Yeah that does sound kind of low, then. Have you every asked an endo if finasteride could have caused permanent side effects?
 
There is a lot of talk in the media now about Propecia causing problems. But I finished taking the stuff nearly 9 years ago. So it doesn't relate to the BFS, except that it may have helped create an environment that was more susceptible to whatever triggered BFS. Does that make sense? Anyways, I don't attribute BFS to Propecia at all. Because the major loss of libido and testosterone levels down to dangerous levels, happened after BFS started. Plus, the other guys here with low testosterone, didn't take Propecia. And they were most likely also at the 800 mark, so they went from 800 down to 240. I assume.So I need to do some reading on this HPA dysfunction thing.
 
muppet get your ass over here. you squashed my hopes and dreams with Adrenal Fatigue so lets discuss this little diddy for a bit. I still haven't had a chance to read about it but, its not pseudo science. Is "Adrenal Insufficiency" ? If we just swap the last word suddenly we leave the realm of Naturopaths and enter the realm of Old School Medicine?-Burger-
 
Burger -What's up buddy. I'm here. Nice T-shirt man. I am wearing my "I love Hypothalamus Pituitary Adrenal Axis Dysfunction" one right now ;)I have been living through a 2 day Netflix crash for the last couple days. I really can't stand when I sleep for 9 - 10 hours then wake up and I am a zombie, no energy, feel like crap all day. It took 1.5 - 2 days to snap out of it. Weak, fragile, nervy, sore. Mind and body, just tired. I can usually tell its gong to happen because I get more vibrations in my body - specifically, I get this "butterfly larva trying to burrow it's way out of my left calf" sensation and I know it's time to batten down the hatches.So Yeah, the HPA axis thing. Good topic. I have read about this in a couple books. Like I said, a lot of the Chronic Fatigue Dr's seem to be into this theory. It's kind of like in the adrenal fatigue family thing, but maybe more measurable? I am not sure it's too quantifiable in my understanding but hell, whatever most people have on this board is unmeasurable for the most part by today's standard, using all the medical test normal ranges. If you have a ton of hormone tests that are out of whack or sup-clinically low, I think the same as you, there has got to be something going on!! It is adrenals, is it pituitary, is it thyroid, or something else. You as well as I know that, if the numbers don't go high your low, then the Mainstream Dr. don't tend to treat. But come on, something is going on. Am I a hypochondriac with too much health anxiety? NO!!! My feet just twitch tingle and buzz... that's what my problem is. Thanks for not being able to measure it. I will read more on the HPA thing. I know just from that table halfway down I can see where I could have caused my condition in a lot of those areas. I think for the most part we all are dealing with Blown Out Body Syndrome. It never shows up on tests, for the most part, and the only cure is, like you have said numerous times: Diet, Exercises, and handling your Stress. In "From Fatigued to Fantastic" and a lot of other books they recommend eliminating all those stressors in that table for relief from HPA dis-function. I will keep reading. Oh, if you have not read Dr Hyman's book "The UltraMind Solution" its a pretty good read. He is an MD who had Chronic Fatigue Syndrome and was cured. He is a strong believer in proper nutrition, stress reduction etc. to cure hard to diagnose chronic cases. In fact there is one lady on here who used the book to cure her Neuromyotonia: MD
 
Yeah ... its clear that medicine has a long way to go before they discover all the mysteries of the body.Obviously something "Broke" in us at some point. Its just so strange that suddenly, on a dime, everything changes. That is weird. Its a lot more reminiscent of an infection in that regard. I dont usually hear of the body just breaking like that. I suppose there is a building up period but its still weird ... how abrupt it is. Who knows... Its also strange to me that there seems to be no testing, or bloodwork or diagnostic measures for adrenal function outside of full blown disease. (addisons, etc). That whole world of the adrenal realm is therefore categorized as hocus pocus by doctors. A typical practice for doctors. That which they don't have sufficient information on, doesn't exist ... No matter what anyone says however, its no coincidence that so many people here are long distance runners and bikers. Fitness enthusiasts and the like. Seems every person I interact with on here is either doing Boot Camp at 5am every morning, or they just ran their 26th mile for the day. Either that or they're avid participants on bodybuilding forums, or have a history of anabolic steroid use, etc. Im sorry but that is just *too* coincidental. I have spent the last 15 years participating on online forums and run one myself, and you simply do not see that stuff so frequently on some random health web site. So yeah, there are certain things about the people on this forum that you simply don't see on other health forums. Certain glaringly obvious differences. That is one of them. The other is how many folks are speaking another language. For a forum this small, so many people being from northern europe, france, netherlands, etc .... that isn't common. Nobody agrees with me on this but I know I'm right. I don't know what could possibly be the significance of that. Only thing my brain goes towards is Lyme disease which is common in those areas, and northern USA. Aside from that, maybe europeans are high stress? I know Germans are (wink wink Chrissi!! LOL) Maybe its all those darn bikes in those european cities. Maybe people are stressed and exercising too much also :) Anyways ... I heard Dr. Hyman is a virgin. True story?-Burger-
 
Absolutly Correct, Football (soccer ) for 30 years non stop.Professional / semi professional / local leagues.Retired for 1 year, then -BOOM ,what is this *beep*.Alothough some of this medical stuff goes over my head ,I couldn't agree more with the above post Burger.
 
The adrenals may get over-taxed, depleted, or start to not function properly, but in a vast majority of cases this would only be temporary. Never underestimate the ability of the body to heal itself. What is missing in most cases is that 1.) most people/doctors never realize the adrenals are in need in the first place and 2.) even if they are realized to need care the doctors only have surgery or drugs at their disposal and the adrenals need neither. Everything that happens in the body happens for a reason. Every symptom manifests to counter-balance something else that is going on. Sometimes you can have a complex chain of events, each causing something else to react and fall out of balance. It all happens for a reason though. The adrenals are likely just another symptom of the imbalances that cause BFS in the larger picture.
 
Christo -A non-exercise group is definitely present on this board, but I would expect them to have significantly worse symptoms, if this is related to HPA Axis Dysfunction or Adrenal Insufficiency.Why? Because such individuals have zero outlet for the anxiety, emotional trauma and stress they experience. That inflammation will continue to build, continue to put strain on the adrenals, and continue to pump cortisol and adrenaline into their veins, with no way to release it. Add lack of sleep, hours in front of the computer, lack of sunlight, the intake of coffee or energy drinks, and you have a recipe for disaster. Nothing calms inflammation and releases stress better than moderate, physical activity. I didn't get BFS from exercise, but from a long process of traumatic emotional events, lack of sleep, bad food intake, poisonous medicines, self induced damage, vaccines, antibiotics, lack of electrolytes, abnormally low cholesterol, viral infections, and some significant exercise just to "run me down" even more.As far as your thread goes, it sounded like you were trying to prove that you guys are different than all the exercise enthusiasts here. I only chimed in to encourage people to *begin* moderate exercise, because it *will* help their symptoms. I don't think the celebration of a sedentary lifestyle of complete inactivity is a good thing. If HPA Axis Dysfunction is related to BFS, then you guys aren't different at all. It's only when exercise branches off to putting strain on the body, tiring it out, and wearing it down, that it becomes bad for people with BFS.As far as my "vision" goes, I still don't know what causes BFS. So my vision has remained the same from the beginning. Im still searching, and enjoying every minute of the learning process. -Burger-
 
I definitely believe that something is greatly off kilter in the hypothalmus with many cases of BFS, especially mine. My BFS is the result of decades of extreme stress, completely messed up sleep cycles, years of extreme/intense exercise, years of herbal supplement use, bad eating habits, and just general inconsistency with my lifestyle...complete lack of routines and whatnot. The sleeping pills that finally set off my BFS were just the tip of the iceburg. It had been brewing for a long time. Besides the bodywide twitching, I've dealt with really messed up sleep since this started which has admittedly gotten better in the past month or two. I had extreme food intolerances which also have gotten somewhat better recently as well.Like Burger, I wonder how doctors can simply dismiss us as hypochondriacs when there is clearly something malfunctioning somewhere. You don't just suddenly start twitching everywhere 24/7 out of nowhere...but the body does heal itself slowly. Slightly over one year in, I'm seeing a noticeable difference. Amazing what the body can do on its own either for the better or worse. My ability to get deep sleep is nearly non-existant and I definitely have chronic fatigue every day, but even that has gotten somewhat better recently. I used to jerk around non-stop all night long for nights on end and get no sleep (again probable hypothalmic dysfunction) and most nights nowadays I'll noticeably jerk maybe 2 or 3 times before I fall asleep. If anything, BFS has forced me to really take a look at my priorities and lifestyle and constantly re-examine them. I now follow routines, try to stick to a set bedtime, and have been moving more and more to a paleo diet. Last year I couldn't eat any meat, but now I can eat beef, fish, lamb, and I'll be adding chicken back into the mix soon. I don't know what it is about the paleo diet, but it seems to be helping somewhat in all ways.So if it's hypothalmic dysfunction, then hopefully that'll sort itself out over time as long as we take really good care of our bodies.
 
This HPA Axis Dysfunction theory is really sticking with me as I think more and more about how my BFS began. There is a structure in the brain called the sensory homunculus (spelling?) which basically has a one-to-one correspondence with neuromuscular sensation. For instance, if an electrode were placed in the region of the sensory homunculus responsible for sensation in your feet, you would feel something in your feet when that region of the brain were activated. So I'm wondering...might BFS originate entirely in the brain around HPA Axis Dysfunction and might the brain be sending signals to the muscles via the sensory homunculus telling them to contract? Might the "spreading" of our twitching be entirely due to the dysfunction spreading across the different regions of this part of the brain? I've been thinking a lot about this lately but I don't know enough about neurology to really get anywhere useful with this theory. Thoughts?
 
I am all over this theory lately, but for the first time, I have been too busy to research it. I fully expect to hit a dead end (LOL) but at the same time, this is the first time people's bloodwork has actually matched HPA Dysfunction. That is something that can't be said about any of the other theories I have floated. The beauty of the "dysfunction" is that it can be in either direction. DHEA can be sky high, or too low. Testosterone usually low. Cortisol can be too high, or too low. Dysfunction leaves it wide open. But as I mentioned to Chrissi on Skype, I still have to somehow correlate twitching with HPA Dysfunction. Or maybe not. You can google adrenal fatigue and see plenty of people reporting systemwide twitching. Your theory may be valid, but I know nothing about it just yet. As a side note: Even if this is the true cause of BFS, the exercise/stress management/diet change theories still fit perfectly. Science has proven that all three of these play significant roles in the hormone/steroid activities in the body. So it all really does fit perfectly.
 
Burger, I don't think you are going to hit a dead end with this one at all. I don't think the HPA theory explains everything, but I would bet money that it explains at least 70% of what's going on with us, maybe more. I had a conversation with a neurologist in New York a few months ago about what the latest and greatest BFS discoveries have been and I am going to directly quote what he said (he works in neuro-imaging): "I think most neurologists feel that BFS is a way your muscles are. There is some evidence that the T channels that carry calcium away from the sarcoplasmic reticulum in the muscle fibers are anatomically different in your muscle, hence the repeated fasciculations. So the treatment is only symptomatic, because you are not going to change your muscular anatomy."Now I don't know what this has to do with the HPA axis, but let's suppose that our muscles are pre-wired for extra twitching via anatomically distinct T channels. Then suppose our adrenal glands get overloaded...in a person with normally constructed T-channels, perhaps their twitching wouldn't be as bad as ours or would go away quicker, but people like us may just be wired differently, and I mean in every way, including our personalities. Another neurologist, Jack Scariano Jr., wrote, "This is unusual because [BFS] is a acquired muscle abnormality, as opposed to a congenital type of muscle problem in which the muscles fire at a very low threashold. Cells in our body have membraines which maintain a electical charge across it. the charge is maintanined by the movement of sodium and potassium across the membrane. These elements mover through channels in the membrane which let the sodium in and out in microseconds. when ths sodium is let in the cell has a discharge which in muscle makes a contraction. Now when you have benign fasiculations, these cells fire at much higher potential which leads to the fasiculation. A simple explanation: lets say that a normal muscle has 100 sodium molecules on the outside. when 50 are let inside. the muscle contracts. In benigh fasiculation, the muscles fire at say 10 sodium in, the muscle fires early and more frequently. Anxiety also cases chemical changes which make the muscles fire more frequently without intendent movement. So the facsulations get worst."Notice how Dr. Scariano mentions that anxiety causes "chemical changes." I am wondering if these chemical changes he refers to are a confluence of HPA axis dysfunction and anatomically distinct T-channels in the muscles. Maybe anxiety over time even has the ability to alter the anatomy of the T-channels plus much of that could be genetic as well...who knows? It's a chicken and egg question for me, but the neuro I spoke to seems to be leaning toward a genetic predisposition toward altered T-channel anatomy (which might explain why BFS runs in families).And speaking of the motor-sensory homunculus, here is a basic wikipedia entry explaining what it is: What is especially interesting about this brain structure is that it plays a HUGE role in sensation and perception. People who've lost their arms or other limbs in accidents can still "feel" their presence thanks to this body map. This phenomenon is called "phantom limbs" and a prominent neurologist by the name of Dr. Ramachandran wrote a book on it about a decade ago called "Phantoms in the Brain." A must read. I loved it. So my theory right now is that basically BFS is result of (A) structurally altered T-channels in the muscles, (B) generalized anxiety causing HPA-axis dysfunction and thus chemically altering muscle function much worse in people who have these altered T-channels, and (C) perhaps some cortical dysfunction via the sensory homunculus.I would be very interested to have an experiment run where there is a non BFS control group and another group of very heavy BFS twitchers and then have both of them go in for functional magnetic resonance imaging (fMRI) scans to see which areas of the brain have altered blood flow during twitching episodes compared to controls. That may explain the cortical component to this (lol, it's not ALL in your mind, but you know what I'm saying, right?)If this is truly the case, I am afraid that may never be a cure for BFS, but there should be a way to treat the symptoms effectively by targeting the HPA-axis dysfunction via stress management and possibly medication. Making things less chaotic, you know... Well, what do you think?
 
Good post.When you start to research cortisol, adrenaline, and other hormones and their effect on muscle firing, you'll see a direct correlation there too. And the HPA Axis directly affects hormone and steroid levels. Everything is tied in. Just google this term and you'll be swamped with results: adrenal fatigue muscle twitchingHPA Axis Dysfunction is implicated in Chronic Fatigue Syndrome and Fibromyalgia as well. So its blamed for a lot of unrelated and very unique disorders. I guess how it plays out in each person can be different. It may be a lot like mitochondrial dysfunction. That's a very initial precursor to tons of "down the stream" disorders. Disorders that take on a life of their own. Technically mitochodnrial damage could be the culprit, but by the time you end up with "X" disease, you barely remember that the problem is in your mitochondria. It may be the same with HPA Dysfunction. It may be a "first level" trigger that .... since it has such a widespread effect on every process in the body ... leads to numerous eventual disorders. However - with the number of worry warts and extreme athletes here, it is almost a no brainer what is going on. Stress causes muscle twitching. We already know that. Excessive muscle working causes muscle twitching. In everyone. So here we have a bunch of extreme athletes and stressed out people .... who twitch like crazy. Something "flipped the switch on" for us, and it hasn't turned off. I think doctors looking at the whole potassium / calcium thing are looking at it very simplistically, but I get where they're coming from. I think if HPA is part of this, then it would be the hormone and steroid levels which agitate things for us. This is the very reason why anything affecting hormone and steroid levels (even food) can trigger symptoms. I am speaking before I've had a chance to research, so I need to get going on that. Apologies for the delay. I have friends coming into town from California this week so I'll try to start reading more after.-Burger-
 

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