Experiencing Anxiety: Common But Misunderstood

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NordicPrincess

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Hi you all,I'm thinking a lot of the BFS-diagnosis. No one knows what it is. I work in the health sector (not since jan because of my deceases witch no one understands..), and I have seen and talked to very many people with high levels of anxiety (have to be hospitalized because of this). Anxiety are a VERY COMMEN decease,and most people will experice it some time in their lives. NONE of the anxiety patients I have seen have symptoms like we do (twiches, paresthesias, migrating pain that feels like nerve pain...) NONE of my collegues (doctors in various specialities, psychologists..) have ever heard of the symptoms we have. My life was at its top when I got severe diahrea and then extreme pain in my hips that spread down my legs and then fasciculations in one leg that became body wide in two weeks, and awful paresthesias - tingeling, pins, needles, feelings of cold water, feelings of thousands of bugs and snakes, and fingers shaking, globus sensations, loosing feelings in fingers, toes and foot at night). This is a true nightmare and I have a low quality of life now. I have been to several doctors, taken EMG and neurography, MR and so on. My last neuro visit was on wednesday. Finally I met a neuro who said that they HAD TO keep trying finding out of this. It is NOT ANXIETY! Maybe anxiety can worsen the symptoms, but this is the case in almost any decease! So when we keep answering ourselves and our fellows in here things like "it's probably just anxiety", I think we are very very wrong. Is it because the doctors don't understand our symptoms, but see that we obviously are scared, taht they mention anxiety as a possible mechanism, and we begin telling this to our selves because we have nothing else to say..? and explanations are very important, people will always try to understand, thats our nature. And how can doctors take us seriously if we say are "accepting" a "anxiety hypothesis"? Then they will never find out, they will never even try to do so. In my opinion we shall not accept beeing left to ourselves. It's extremely hard to keep going to the doctor, new doctors, new tests and so on, but an we just give up trying to find the cause and then maybe a treatment, then we have only the hope of time left...? It's is something very wrong with my nervous system and I want to find out! I think my point is that ANXIETY IS SO COMMON AND BFS IS SO RARE! So if anxiety was a big contributer to our symptoms, then BFS would be a common disorder as well. Any thoughts on this?
 
My thoughts on this..................over 4000 of BFS sufferers on this board show, that BFS exists, that your symptoms are normal for BFS and that they will get better over the time. The board and the mayo study prove that it is a syndrome that improves over the time, and that BFSers do not have a bigger chance of developing any serious disease, neither ALS, MS or cancer as often brought up in discussions about paraneoplastic syndromes. It is not "just anxiety", that is right. It seems to be a strong trigger though. But obviously noone knows what it really is. But you know what...I don't care anymore. I have "something" that will most likely get better and better and definately not kill me. Most doctors don't even know what it is, actually BFS doesn't even exist here officially. I am very optomistic that this is a phase of my life that will completely go away, as it already has for most parts. So I won't waste any more time on this. I already lost months of my life living in fear, and for sure I won't waste any more time in trying to find an answer that does not exist so far.
 
Yeah, this is very true. Let me begin with the not so good stuff - As you said, anxiety can definitely worse symptoms because it is the state where the nerves irritability threshold is lower...but no neuroscientist has ever published that anxiety can be the inital reason.A lot of people with anxiety report twitching muscles. But there is a crucial difference between twitching muscle and twitching IN a muscle which people do not take into account.Also saying that BFS is common is not true at all. The BFS affecting whole body frequently is rarer than ALS (this is also mentioned in the ALS Al Awaji criteria, replacing El Escorial). Dr. Eisen, top ALS specialist has seen several cases of severe BFS (body wide, frequent) in his career. This board has had only over 4000 members wordlwide in all years of its existence..Unfortunately we cannot even say its neuromyotonia (common form of PNH) because we do not have myokymias and its typical features on the EMG...and most of us have not only peripheral nerves affected..But this does NOT make BFS non-existant. It is a real condition, in most cases benign. It is rare but it will not kill us. There syndromes like that, idopathic and not harmful. Remember that in medicine, we know basically nothing in the neurology. We do not even know the exact cause and origin of fasciculations in MND.
 
j_sageurge: I assume it is based on their experience - Al Awaji was conducted by the best neurologists all around the world. Also with severe BFS, everyone will see a doctor. But why are you so concerned about this? It is quite clear BFS is rare, I know just one more person who had it severe.You missed my point - even if it is a rare disorder, it is pretty real, no matter what local GPs or neuros think, as the OP mentioned. The most popular neurology text books do mention benign fasciculations, and do you know how the define it? "Occassional and brief fasciculations in calves and feet are quite common, typically after excercise". It does not sound like what I have.
 
twitchydoc: I do not know if you misunderstood me, or if I misunderstand you, or wether we agree.. My point was that BFS is a very rare decease. (and anxiety are common, and therefore I think anxiety is not an important factor in trying to understand BFS). And I'm convinced BFS is a real decease! (and not a psychological decease, even thought all psychological deceases are also real). Chrissi: As always you have good replies. I really wish I could handle it as you do, but I'm not able because my symptoms has not at all gotten better with time (maybe the pain has, but the paresthesias has definitely not and those are really really hard to handle). So I feel I have to keep on trying to find out what is wrong and get some help.Hugs!
 
NordicPrincess: :) We did not misunderstand, we are on the same page - I absolutely agree with you that BFS is rare and not caused by anxiety.
 
How come then that my neuro/psychologist says that he sees people with bodywide fasciculations all the time. How come that the neuro of a Emilyomouse friend says that she sees about 2 cases of true bodywide fasciculations a month (or was it even a week?) and only 4 ALS patients a year? How come that 3 indepenndent Emilyomouse ALS specialists said independendly, that bodywide fasciculations are so damned common in comparison to ALS that bodywide twitching from their experience is not even worth sticking a needle into these persons. My Fibromyalgia specialists who sees and treats about 40( or most of the time even more )patients a month with Fibromyalgia says that his patients with Fibromyalgia and CFS twitch like hell, bodywide, lower extremities, upper extremities, distal and proximal. That this symptom is sooo common in those (not at all rare conditions) that he even mentions them as-from his experience over the last 30 years or so- one oft the most common side effects of those diseases? How come that -when I brought up my bodywide twiching-i found 2 friends who were twitching widespread for moths or years and never bothered about it, even though they could instantly show me calves going mad and biceps twitches? My guess is....because the Emilyomouse health system provides instant access to free healthcare , so anyone who is bothered by anything can see as many doctors as he wants to. Maybe it is part of the Emilyomouse mentality to be a bit hypochondric and pessimistic. So I just guess that this is the reason why so many patients here see docs for twitching. Because I cannot think up any other reason why bodywide twitching (not called BFS here) should be more common in Emilyomousey than the rest of the world.
 
Chrissi: What you write is interesting, and I certainly believe you, but when I search BFS on the net it always is to read that BFS is a rare neurological decease, and it's also true that NONE of my collegues (health professions) and NONE of the doctors I've been to have ever heard of a case like mine, and NONE of my friends.. I live in Norway and we have also easily access to free health care. It's strange that these two contries in Europe are so different in the case of having heard of fasciculations..(or BFS) You only write about twiches. Maybe more people are having that, but I feel that twiches is only a part of my picture witch are dominated by paresthesias (of every possible kind) and migrating pain. I think I would have a MUCH better life if "only" had the twiches.. Even if fasciculations are more commen that I thought, I do not believe that wodywide fasciculations 24/7 are common, and at least anxiety have to be MUCH MORE common.. and if you read about anxiety disorders in the diagnosis manuals, there is no mention of fasciculations (or paresthesias..)My point was not to debate wheter BFS is common or not, more common than ALS or other deceases, but to tell my opinion that BFS is not so related to anxiety as one can get the impression of when reading this forum..(at least I have got that impression). Of course anxiety can worsen symptoms, as in others deceases, but I can not see anxiety as a cause or a major contributer..
 
Remember that BFS has many different names and some doctors do not even recognize it as its own syndrome. Try typing in muscle twitching and see what kind of response you get. I think twitching is a lot more common than people realize.
 
NordicPrincess: I undestand you completely and this is also my point of view. When I was at a metting with "depressed persons" and "anxiety support group" everybody was looking at my symptoms like they were from Mars. I know of only one person in my country who has fasciculations, but I met him on this forum. My neuro told me BFS is 20 times more rare than ALS.But like you I do not only fasciculate but I have severe paresthesia everywhere. So severe I was in a theatre today and my leg felt asleep 3 times and my hand 2 times. I have limb falling asleep in a minute I press to anything and every night when I sleep. It is not carpal/ulnar entrapement as I have all 4 limbs involved. This is much more than fasciculations, including my pain in the joints, wrists, ankle...I do not believe anxiety brought this on me, anxiety brings colon and stomach problems and pannic atacks, not this. But I stongly believe this makes everyone have high anxiety fearing for his/hers life because of the fear of the terrible diseases. I think this makes anxiety not vice versa.I find 4000 twitchers in a world of 9 bilion people quote small number. In fact I find more ALS posters on ALS boards in one country (not that I look it any more). It doesn't mean we don't have this disease but for someone who doesn't have it it is rare to get it I think.
 
Jerry2: I say Amen to what you wright, I totally agree. But I think it's really scary if ALS is so much more common than BFS because then I feel the chance of me having ALS is much bigger than BFS...this is really scary.. yes, of course we develop anxiety of all of these symptoms, all people would! in fact, when people come to the neuro with symptoms like we have, most often the neuro FINDS SOMETHING in their tests - ALS, MS, polyneuropathy, diabetes and so on.. my neuro was convinced he would find out what was wrong with me,and when the tests didn't gave a clear answer he looked at me as if I was from Mars...Both my hands, and often toes on both feets also falls asleep every night (wake up and don't feel them at all), but has never happened daytime. I have a lot of positive paresthesias..(feel things that are not there - like hair, rain, snakes,bugs, "dancing" of nerves, tingeling....)MIke: maybe many people have twiches now and then, but not so much as we do (at least my impression is that the big majority in here have twiches most of the time, like 24/7... and again, if its BFS I have, than BFS is much more than "only" fasciculations. I'm convinced that the full blown BFS picture is very rare, otherwise all doctors would recognize the picture (they learn altso about rare syndromes remember) and there would be many articles on this in PubMed etc, but quess what: its none! :(And another thing: remember that even if neurography and EMG is clean, that doesn't mean that our nerves are working as they should. Read about thin fiber neuropathy... I'm going to be checked for this..the neuro thought I can have it, but as far as I have read fasciculations are not a part of that picture?? The neuro also said that cleam NG and EMG doen't mean that you don't can have a decease in the nervous system, but the decease has not created nerve DAMAGE, "just" causes the nerves to react wrong/give wrong signals.
 
After a lot of reasoning, I was staring to accept that my BFS is actually a somatization disorder linked with years of anxiety/depression. At least it makes sense. Moreover, most of the doctors I have visited said “It is anxiety”. Now this discussion got me confused all over again :) I remember my last vacation; I had some great time at the beach. I was very relaxed, sunbathing and drinking coconut water. But the BFS symptoms did not get any better! :mad: Joint pain and jerking and twitching all the time. So I thought, “the years of anxiety could have damaged something in the nervous system, and it can’t be fixed”. Makes sense? I do not expect BFS to get better, but it is hard not to have an explanation for what is happening. Every time I go to the neurologist, she puts me in some random pills to see what happens and nothing works. Can be BFS be associated with bacterial infections? I had a lot of sinus infections in the past. But who didn’t have infections? Genetics is involved? I am of Emilyomouse/swiss decent and I see a lot of people from central Europe in this forum.
 
My 2 cents:- The "benign" in BFS also means "uninteresting" or "irrelevant" to most doctors and patients. So it won't show up in any statistics. - Yes, fasciculations can be the first symptom of ALS and are a "hallmark" of that disease. But if ALS was much more common than true BFS, we would have much more "After some months, I've now been diagnosed with ALS"-stories here.- I have to agree with christinasgirl123, my GP and a neuromuscular specialist all said that BFS is quite common and they see it all the time.And back to the original question: I don't think the "my calf twitches a litte bit after I stood on my toes for some days"-type qualifies as BFS at all. BFS is constant, widespread, random twitching practically everywhere without a known cause.
 
From everything I have read, BFS seems to be quite common. The only problem is that there are a bunch of different names for it. Get doctors to agree on a name, and maybe we would get some statistics, but in the end all it is is benign muscle twitches.Jorge, keep thinking it is a somatiziation disorder. You will be much happier.
 
I would like to add that after reading my EMG report from just 5 weeks ago before my back surgery that despite obvious twitching in my legs, they were not fasciculations. Nothing was detected during my test. I don't believe we all suffer from the same thing...I believe this is a board with people who share many symptoms in common, though the origins of their symptoms are different. I use this as an example. I used to have severe burning and pins and needles in my legs, I assumed part of BFS. But since surgery on my spinal cord...I have had none of those yet I still do twitch. I believe one twitches due to post-viral, one to fibro, one to nerve damage...etc. I don't think we all fit into the same "basket." That is why I believe it is so hard to find the definitive cause. It is because I believe the causes are many. Frances
 
Anxiety has to have an effect on us, because you read too many stories, including my own that fit the same pattern:-had some sort of illness or medical condition-began to twitch all over after stress over the previous medical conditionor-began to twitch, (usually) a localized twitch-decided to use their webmd.com certification and look up their symptoms-read about dreadful diseases-began to twitch all over the placeor mine-had different medical problems -took a medication, suffered side effects-very stressful time, $20K worth of medical tests-had already thought that I had everything from stomach cancer to a brain tumor and probably a cyber-chondriac (frequent user of webmd)-began to have increased twitching, limited to feet and legs-went to a doc who had me walk on my heels/toes-went home and looked up why the doc had me do that-read about dreadful diseases and panicked-twitches everywhere, every second of everydayNow, I think I may have SFN (small fiber neuropathy) in addition to neuropathy (side effect of med) but here is the difference between me and the regular person with SFN who doesn't diagnose themselves by the web. Most people with SFN acknowledge they twitch everyday, even though twitching isn't really listed as a symptom of SFN. Those people do not question whatsoever, if they have another disease. They twitch and they don't care, "oh well, I have SFN and I twitch because of it" is what they think. Now if I were officially diagnosed, I'd probably still be freaking out and looking for other reasons and justifying why I must be the exception and probably have something else much worse. As far as fasciculations being a presenting symptom of ALS, I have read that only 6% of all ALS patients have ever presented with just twitching as a symptom. 0% were under the age of 40. In addition to that, I've read that those 6% probably had a weakness of some sort that they ignored, and only were prompted to go to the doc because of twitches, although they knew something else was wrong with them. In their mind, the twitches sent them to the doc and that was their presenting symptom. Anyhoo, that's what I've read.
 
If bfs is so common wouldnt be there more research done? To me it seems like there is very little info about this syndrome and besides us ;) no one seems to be interested by this stuff... :unsure:
 
Thank you. i have just been called up from the hospital. i have a signal change om MR pointing to MS. going to hospital 24.sept. very very scared and sad now.
 
From my experience:1. Every doctor I mention twitching get's scared. Nobody said to me it is nothing, either they do not know or they say uhhh. My friends do not know anybody with same problems than me, all say: wow boy, you have something wierd going on. It is totaly different than when you say you have constant diahhroea. Then all the doctors and friends tell you how they are some they know have it and it is stress. Everybody is afraid of nerve sh**. I wanted to go to hyphnosis with a famous one who has hypnosis theraphy. When I told him I have twitching and paresthesia he wouldn't take me. If you have medical condition such as this, I can not take you. They are all scared and we also then get scared.2. All the Issac symptoms, neuromotonia, BFS seems to be rare. All together is rare. Of course if you are in the only community on the world and you hear 4000 persons with similar symptoms you feel it is not rare. But if you go to the maternity hospital, you feel everybody is pregnant. If you go to hospiral you feel everybody is sick... 4000 is not a lot, even if 10 people read and one write is still 40.000. The world has 9 bilion people. This is rare. I've seen more topics and forums of MS than on twitching and paresthesia. And MS is rare also.Because it is rare, we are more scared. If it is rare, it can not be me, right. But somebody still it, it can be you. If the symptoms match and doctor clears it, it is you. Don't dismiss if something is rare.Today I was awoken all night long with pain in the back side of the palm and thumb (radial nerve) and I have pareshesia here in day also. In both hands. Last week my ulnar side got numb, 4 weeks ago I got other problems, I was twithing in thumb, now my hip is twitching 24/7... I mean, there is no single disease on the world that has all this symptoms except "BFS", so it must be it, right? I will test for blood sugar tommorow but twitching is not a sign of diabetic neuropathy as I know. And I do not believe I have 101 diseases!I am tired for last 4 days, I have puffy eyes, everything is wrong with me and yet I am supposed to be healthy. My thumb hurts me (the other one that twitched and the other one that has half numbness now). I don't believe in carpal, cubital or any other tunnel, I can not have all the "tunnels" on both hands, hip twitching and leg problems from it.I am sick of doctors and examinations.
 
Just a couple things I'd like to add. It was mentioned above that "most" of us do not actually have fasciculations, we have twitches. I'd like to dispute that. I don't have the actual stats but I'd say about 50% had fascics appear on the emg and 50% did not. The 50% that did not doesn't mean they don't have them, they just weren't picked up on the EMG. Some neuros take that needle out pretty quick!Also, I asked Mayo how often they see people who twitch as much as I do. They said "all the time". That doesn't give any indication how prevalent it is accross the entire population but it was comforting. Jerry, how do you know your doctors were "scared"? If this were a court of law, I'd scream out "HERESAY!"Lastly, I don't think we can say that the reason not much in known about BFS is because it is rare. The reason not much is knows about BFS is because of the "B" in the name. There are lots of dreadful diseases out there with still, no cure. Thats where all the research is going. Many will say the cure for BFS is a good psychologist. These symptoms are very real and very disturbing. But very harmless.Just my 2 cents.-Matt
 

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