Seeking Feedback on BFS Symptoms

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Razzyhaxor

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Hi there. This is my first post here. I've been suffering with this for nearly 18 months now. I'd be grateful for some feedback, because my symptoms, whice typical of BFS in many ways, is less so in others...I was 43 when it started, previously healthy. I actually started with sensory symptoms, a few days into a very minor viral illness. Burning sensations, occupying skin patches about the size of my palm, would pop up anywhere, last for a few seconds, and go again. This went on for a couple of months, then the fasciculations started. Calfs mainly, but can be anywhere. I have some severe paroxysms which can last for the best part of the day, where it seems just about every muscle in my body is twitching, and I feel physically dreadful. This is why I hate the term "benign" to describe this condition. Okay, we might not die from it, but it is life changing, mood affecting, performance affecting..... in general bloody awful.The burning patches have stuck around around, but are much better now. The fasciculations are never gone completely, although some days are better than others. I've been through the whole gammut of tests. Negative MRI (brain & cspine), negative for all the common viruses (except old EBV), a normal nerve conduction test and normal EMG (soon after the fasciculations started). Some days i would swear I am becoming weaker - my legs feel like I am walking through molasses (although neither of two neurologists seem to be particularly concerned).I guess it is a) sensory symptoms and b) the "whole body" sensations of feeling just dreadful that seems different to others here. I'd be grateful for anyone's thoughts. Many thanks.
 
Hi YaAre you on any med's at the moment? I am on some good AD meds called amitripiline 10mg this helps with pain relief and sensory symptoms. I do agree that anxiety can play alot in this horrible sydrome. Soon as i took my AD's i saw a huge improvement. Yesterday I started shaking while resting and I haven't done it ages. Anyways I really had a panic attack and my left leg nearly into perceived weakness. Have you tried setting your self small goals like improving your walking distance eack week? Because I am a nurse my legs would be shaking after a 6 hour shift but now after 2 months my body is used to it...I wish you all the best Kate :)
 
Hi and welcome.....You sound like a carbon copy of me and many others on here....I started with sensory symptoms as well and the twitches kicked in after...My legs felt terrible....they shook, the felt weighed down but some how also felt very weak and unstable...I actually refused to walk for a long time because of how bad my legs felt and the generalized fatigue and feeling just like crud was a huge problem for me as well....So your story does not sound out of the realm of BFS at all....there are many here who have had the same presentation.....Take care and rest easy that you are in good company....just dont read too much lol.Robynn :D)
 
Thanks to all you lovely people for your responses :)No, I'm not on any meds. I did try Prozac, and subsequently nortryptilline and they didn't make any difference (apart from getting a slight mood lift with the prozac). I very much associate the onset of my symptoms with a minor viral illness I had. Yes, I had been under some stress as well - but then, so is half the Western World, and not everyone gets BFS.If it was just the twitches, that'd be fine. I could cope. And that is what the name "Benign fasciculation Syndrome" implies. You have twitching muscles, without consequence, and the rest of you carries on as normal. But to most of us here, including me, it is the whole package of associated symptoms which in their totallity makes this condition anything but "benign". I'd never have seen this coming! Previously I was completely healthy. I am a medical specialist myself, although not in a field associated with neurology. This condition has been a real eye opener for me. It needs to be taken seriously, and some decent research is needed.Smiles..........
 
Hi Gerard,Thanks very much for coming and sharing your symptoms. I want you to know that I share almost all of the same symptoms you have with the exception of the burning sensation. Mine are smaller itching sensations in small areas on the hands, feet, etc. Otherwise I twitch thousands of times a day, head to toe. Clean MRI of spine and brain. Blood work perfect. Lyme neg, SPEP neg, ANA perfect. You name it brother. I want VGKC antibodies and celiac next. Always searching. I am a 35yo white male, former college football player. Little over four months into this. 18 point EMG at one month perfect.I have seen two very well respected neuros including a MND specialist. And they all say the same thing. BFS or BCFS. There is nothing else to do but accept and try and move on my friend. Please stay in touch with us. It is good to have someone else knowledgable in medicine to share their stories. PS- funny how my ALS specialist said that she sees a lot of neuros who get constant common benign fasciscs that come to her for consult privately.
 
A post of mine from another area. I hope this helps a little....according to Chinese medical principles, concepts and theories the majority of our symptoms fall into a domain which is not diagnosable from a lab report or mri etc. Just like a shadow which can be seen by the naked eye cannot be grabbed with one's hands YET you SEE it. How does one capture wind especially wind which is internal? Well you KNOW that for sure you can feel the twitching and you and others can see the twitching!!!! Western medicine can not diagnose as it refuses to incorporate Chinese medicine and then develop tests for this thousands of years old medicine. I will say it as many times as I have to.....until hopefully some might listen. If you haven't seen a good herbalist who SPECIALIZES in the individualized use of Chinese herbs (that means he/she makes up their own formulas from either raw herbs or concentrated extract granules) and practices much more than just the use of acupuncture needles then you are missing out on some potential help. No guarantees as these are complex cases leading to what is called internal wind with varying contributing factors but there is help.
 
It suxs that we have to live like this and not know what's wrong with us. I'm just hopeful that our futures will be bright even with this bizzare syndrome.
 
I love your attitude. :) However you are implying - at least to an extent - that the pathophysiology of this illness is psychosomatic. Maybe it is. But if that's true, then the mind has power over the physical body in ways that I, as a medical practitioner, would never have imagined. Doctors have long been guilty of ascribing symptoms they can't explain to "all being in your head" rather than simply being big enough to admit that they (or medical science) just don't know.That said - if you had sucess yourself, johnnyjet, in controlling your anxiety and attenuating the severity of your symptoms, I'd love to hear how you did it.Happy new year to all.
 
JohnnyWhat is shared is not some theory. It's fact in both my life and my patient's lives. The PROOF is in the pudding as the old cliche goes. If you choose to ignore it....hey that's your freedom of choice to stop looking and accept such an imbalanced condition. Is it the complete picture or answer for every one? Not by a long shot as there are many different contributing causes to BFS. When I hear that hundreds of BFS sufferers have tried this simple and realistic approach and got zero results then you might have something. Keep in mind that parasites like most living things do NOT want to DIE. They will fight to the bitter end. That was my experience back in 1991-94 and the same now. Trying such a simple and inexpensive approach may in fact cause a momentary exacerbation as the parasites go down. 43RichyThe43rd
 
IMHO and experience the pathophysiology of BFS is NOT psychosomatic. Can emotions exacerbate it? Absolutely yes just like calming those emotions can reduce symptons but can not get rid of something that is physically imbalanced.
 
Are the symptoms real? Yes. Can they come from an overactive nervous system? Yes. Can prolonged stress cause your body to release stress hormones in your body at toxic levels? Yes. Can those chemicals effect your nervous system? Yes. Twitching can be caused by stress...its that simple....is it real? Of course!....did it start in your head? I think in some cases it definitley does.
 
There is ABSOLUTELY a third choice. NOT become OCD about it while continuing to look fo ways to reduce or eliminate BFS by various methods one of which is eating and drinking healthier. There are of course others.
 
Parasites are so common and yet usually the MDs do not even look for them. Is that the only factor copntributing to the BFS? Most likely - NO. But if we have parasites then much of what we do to try to correct the twitching will be to very little benefit. Since it is not that difficult to determine if we have parasites and then get rid of them.....THEN we can see if other support and life style changes can make a difference. YES...it is my educated healthcare opinion that until we get rid of certain very common factors like parasites we just may remain with BFS. Some of those other changes need to include stop eating certain foods. Do you know for example that the majority of corn in the USA is no longer categorized as a vegetable by the US Dept of Agriculture? SInce the companies have genetically modified by messing with the DNA such a product is categorized as a pesticide because the corn now produces it's own pesticide within. Just another of the factors messing with our digestive and elimimnation systems and over loading our physical liver. One MUST get rid of complicating factors before support and healing can take place.I will say this that I now have a decent input idea of what "channels" or areas of twitching that most of us experience. So far it appears that the following organ channels are involved are: gall bladder as primary, stomach, spleen (in Chinese medicine this is the brains behind digestion), elimination organs channels such as large intestines, small intestines and a few others that don't need explanation here. ok...so its my theory based opn thousands of years of traditional Chinese medicine...but it makes a lot of sense. And the majority at least of my BFS happens around joints.
 
come on man...its not parasites...it may be gluten intolerability...may even be potassium channels...i went to environmental doc early on and got tested for every chemical and metal known to man...Nothing! If it were parasites one of the thousands of people here would have found it....doctors would find it...i appreciate the effort, and eastern medicine may offer help, but it would be meditation that would be of the most benefit...and as for joints, not many muscles not around joints. The ones I can think of I twitch like crazy in.
 
Scoured this and other sites and have yet to find ANYONE, out of all those thousands and thousands of people andf tests you speak of, who checked for parasites. You have way too much faith in western medicine. All I see these days are MDs who order tests or order drugs with zero common sense. I didn't say that parasites were the only contributing factor. Just that they are so easy to get into the body and take hold and until they are gotten rid of all the meditation and medication in the world is not going to resolve BFS. I can tell you FOR SURE about the few cases including mine where parasites WERE IN FACT the KEY contributing factor. So don't be so quick to discount common sense and experience. Let's not speak to those that have never checked for parasites and tell us WHO has? I modernized the eastern art & science of two ancient body work techniques one of which is empty cupping. Many of my colleagues say...oh they know about cupping. My response is that when they have used cupping day in and day out for twenty years and in approximately 20,000 patient treatmwent visits - then come and talk to me about cupping. You obviously are mistaking me for somebody quick to spout off at the mouth. I didn't get to present my twenty years of clinical experience at Harvard University in December 2007 because I have whacky theories. Their scientific community chose my work out of the sheer volume of my experience from thousands of abstracts of others presented. So man......gimme a break.....when you can tell me you had your MD thoroughly checked you out for all kinds of parasites and you are negative that will be just ONE down and thousands more to go. Seems like way too many BFS sufferers have given up.
 
That's because you only "suffer" from BFS if you choose to look at it as suffering. There are lots of people who have been dealing with it for years who would no longer call it suffering. After a while it just becomes your new normal, and is no different than having big ears or a big nose. I stopped calling BFS "suffering" or "a disease" about four years ago. IMO doing that is the first step to learning how to deal with it.What you call giving up, other people call gaining wisdom.
 

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