Discussing Mental Health & BFS

Want to engage some of you in a conversation around the issues of emotion, personality, psychology and this ailment, which I have lived with for just over 3 years.

If you have spent any time at this wonderful site (my eternal gratitude to its founder and keeper) you have read about the anxiety connection. Certainly, BFS led many, if not most of us, into serious and protracted bouts of anxiety and worrying. And its no wonder given the symptoms. For me tho' anxiety preceded the syndrome. I have been an anxious person for as long as I can remember, a born worrier. As one who is also a major believer in the minds power to influence our body, I could not help but wonder if my prolonged anxiety might not have led to my BFS. Or, if some other aspect of my personality made me particularly prone to this disturbing syndrome. I just don't know. Interestingly, in recent weeks my anxiety has diminished greatly (based, I believe, on a mediation technique I have started) but my symptoms have gotten much worse, the worse I have ever experienced. Which leads me AWAY from the anxiety connection. And yet, I cannot shake this notion that the mind-body connection is important, at least for me. Hoping others have thoughts on this topic to share.

Hi bobby,

I've also been an anxiety sufferer for a long time. My symptoms started after a period of great stress and anxiety. Now when I calm down, some symptoms persist like the muscle pains and tiredness and the occasional twitches, mostly in my left foot. But if I get more tense it gets wat worse. Now I think there is a link between anxiety and BFS, at least for me. But it is not as obvious as it would seem. You see as anxiety sufferers we are prone to muscle tightness and pain already very often, and it is not surprising that after many years of muscle tightness our bodies become tired. Thus only feeling better for a few days would not eliminate all the symptoms. I think we have to heal much deeper to allow our bodies sufficent time to heal. We can't really expect results of years of anxiety disapear in a day can we? But maybe we get BFS for a reason, maybe we need BFS to finally get rid of our anxieties...

Thanks for the reply. Your last statement feels so right to me, that my condition - our condition - is part of our journey of a larger healing journey. A relatively "benign" way, at that. Interesting to me, BFS is one of three relatively benign conditions that I have, the other two being congenital.

I guess the trouble is that I lose faith in the process, faith that if I hang in here and deal with what I have, work to release my long-standing anxiety, that in the end, there will be some deeper healing. In those times all I can do is turn inside and listen for that still, small voice that I am lucky enough to hear from time to time. I guess now that I can also turn outside. It's so incredibly helpful to hear another voice coming from similar experience. Thanks again.

I know about losing the faith... believe me. anxiety is a mind trap and a vicious circle. the only way to get rid of it is to move on no matter what. Stop thinking about disease and anything else that ''could'' happen and just live. The more you ''do things'' the less your anxiety will bother you. Some days my symptoms get worse and in my work its not easy: I'm a singer and guitar player so when I sing or talk too much my tongue gets cramped, if i play guitar too much my hand gets cramped... But I go full speed ahead anyway, we can't control much in life anyway, might as well live as much as we can . The problem with ''us anxious'' is that we believe that if we worry about something, we can change it, make it better, avoid the risk and the pain... Thats an illusion, the worry only makes things worse.

you have aquired BFS not through anxiety...but we all share an invader in our bodies.. nobody knows??? i would believe its more of an autoimune in nature type of disorder.. maybe some kind of virus... my wife has BFS and i have BFS.. weird

I am a pre-med student at the Johns Hopkins University in B-more. I have a post and am new to this forum, but I think it is absolutely a great thing. My neurologist is also my advisor and friend, that is why I believe he doesn't take me seriously. Many people have no idea how it feels to be trapped in yourself worrying constantly. I believe some people take it lightly and are just like "get over it." But this experience is so torturous, and it doesn't help when it takes a long time to even get into a neurologist or doctor. I think people underestimate the power of one's mind, as I believe it can make you do ANYTHING. Judging from personal experience particularly, I have tore myself to pieces many times. At some points I don't even want to move because I feel like I have nothing to move for. I pray for all of you, and I don't think this is a non-issue as most would pass it off to be. If any of you have experienced what I have been going through, then you have had your life change so much for the worse. Good luck to all.

I'm sure that there is a mind body connection that is associated with BFS and another part of me thinks that this is post viral. I see so many similarities in all of us twitchers on this site. When I read other's posts on their symptoms and fears it's almost as if I wrote them myself. I definately have anxiety maybe I had it before and didn't notice it as much but now the anxiety is tenfold. When my symptoms started I felt paralyzed. And kept thinking how am I going to live like this? I wanted to do nothing but dwell in my own misery. I still feel like that some days, but not as much anymore. It's helpful knowing that others have the same fears and symptoms. I went to the neuro today and had an emg (that was a torture test-whomever invented it is an evil evil man/woman). The emg was "clean" but my neuro told me to try forgeting about the twiches and maybe they will go away. Hmm like I haven't tried that before? Doctors can be very unsympathic. However, i found another GP and he's great we are doing some more blood work. So for now I live everyday and look forward to the next because I'm too young to let this syndrome get in my way! When your really down and out read some of Basso's posts they are very inspiring.
Felicia

My therapist told me that your symptoms are not caused by anxiety, anxiety is caused by your symptoms. We push our bodies to the limit by working hard, raising families, staying up late for school, etc..When our body reacts with a symptom we have never felt before like a vibration, tremor, shaking, or a twitch we freak out. Mostly we can't attribute the symptom to a specific event. Like if you were in a near miss car accident you may tremble in fear for a few minutes but your body retrns to normal very quickly. So we worry and worry about these unjustified symptoms or google them and our minds start sending out hormones and adrenaline to get the body into flight or flight mode. This causes more symptoms thus more hormones and a vicious cycle that is very hard to break. I found this list of symptoms that can be caused by anxiety or an over stressed nervous system described above...

Shortness of breath
Persistent muscle tension, Stiffness, Muscle twitching, Sore or tight scalp or back of the neck
Heart – beating hard or too fast
Heart - Irregular heart rhythms, flutters or ‘skipped’ beats
Dizziness or light-headedness
Weak legs
Trembling or shaking
Choking
Sweating
Nausea or abdominal stress
The thought of eating makes you nauseous
Lack of appetite or taste
A ‘tinny’, ‘metallic’ or ‘ammonia’ smell or taste
Feeling of unreality
Numbness or tingling in hands and feet
Chest pain or discomfort
Fear of losing control
Urgency to urinate, Frequent urination, Sudden urge to go to the washroom
The FEARS: of going crazy, of dying, of impending doom, of normal things, unusual feelings and emotions, Unusually frightening thoughts or feelings…
Chronic Fatigue
Eye tricks, Blurred vision, Eyes sensitive to light, Dry, watery or itchy eyes…
Dry mouth
Excess of energy, You feel you can’t relax,
You often feel you are carrying the world on your shoulders, Dramatic mood swings, Emotions feel wrong, Always being on edge or 'grouchy', You feel like you are under pressure all the time, Constant feeling of being overwhelmed, Always feeling angry and lack of patience, Feel the need to cry all the time, depression…
Insomnia, or waking up ill in the middle of the night, Jolting awake, Bad or crazy dreams…
Having difficulty concentrating, Repetitive thinking or incessant ‘mind chatter’
Startle easily
Constant craving for sugar or sweets
Obsession about sensations or getting better
Ringing in the ears
Feeling cold or chilled

My therory is that BFS twitching is caused for some unknown reason. I am convinced that the anxiety caused by the twitching launches a full scale anxiety cycle that explains the other symptoms talked about on this board.

Carry on fellow twitchers. I've got one in the base of my ring finger that is driving me nuts.

Best regards,

George

This is a great conversation. Thanks to you all for your thoughtful input.

I think we have to be careful not to make this an either/or debate. "Either BFS causes anixiety OR anxiety causes BFS." I probably started this all off by not expressing my thoughts clearly enough, so let me try another tack.

Anxiety no more "caused" my BFS than rain causes flowers to grow. There is no denying that rain plays a crucial part in the growth of flowers, along with having the right seeds, the propoper soil conditions, enough sunshine, warm temperatures, etc. Mine is a holistic view that assumes that the totality of who I am, my emotions, my physical history (which includes Herpes, BTW), my psychological make up, and my tendency towards anxiety and much more all played a role in influencing my immune system, eventually causing me to end up with BFS.

There are some aspects of my self, like my body type and genetic make up, that I can do little to change. But, there is much I can do in the realm of my emotional and psychological constitution. These are levers, among many, that I can manipulate to possibly influence my experience with this disease. Which is pretty much what others at this site have been saying for years. "Deal with the stress and anxiety to help manage symptoms."

So, why bring it up? Well, I was curious to hear from others about how they thought their personal histories and backgrounds might have influenced their contracting BFS, looking for patterns beyond the physical that might give us all additional insight that we could use in managaing our symptoms today. There is a growing body of hard scientific data that links happiness and a sense of contentment to a longer, healthier life. Clearly, the way one experiences life is connected to one's health. If we can change how we experience our lives, we can affect our health, for the better, even when it comes to BFS.

Wow, some great posts here. I agree with y'all's line of thinking. (A benefit of living in the south is that we can say "y'all's.")

--alyLeoNCali

I'm convinced that the anxiety and BFS are both side effects of an imbalance in the brain. You see, I was diagnosed with depression at an early age and it came on for no apparent reason. At the time, my thoughts were clear and I didn't have too much to worry about.
How would you explain that there are many people in the world who worry about things constantly but are still not depressed or afflicted with an anxiety disorder that has many physical symptoms?
When my BFS symptoms started, I was off all meds for depression/anxiety for a couple of years. I noticed my right arm twitching continuously with no apparent cause while I was sitting on my computer at work. Before this my life was going fine with no abnormal levels of stress. There were no previous infections etc.
It is surprising that the medical community passes this off as a benign condition when it is often associated with anxiety and depressive disorder. There needs to be more research on what EXACTLY causes this disorder, whether it be an imbalance of neurotransmitters or something else. Certainly anxiety can trigger the twitches, but one will not twitch or show serious signs of BFS if an imbalance in the brain doesn't already exist.

My experience has been that there is some association with anxiety - this much is clear to me. My twitching began during intense stress but couple with several other factors that I could also peg as culprits or contributors. Moreover, if I become anxious the twitching will get much worse.

Bobby as a practioner of meditation though from a contemplative Christian perspective, I can tell you that my experience has been very weird with it. In other words, as we begin to listen and be calm the body will naturally revolt. The flesh is really not all that interested in sitting around in peace. There is a portion of your mind, your soul that will war with this spiritual intention. Therefore, I am not surprised that your symptoms are worse in the short run. What you view in your spiritual self and fractions of your soul as peace the body and total mind might not be in accord with. I hope this is making sense...

Not sure either that I agree with MM about our lives forever changed for the worse. Why is that exactly? Twitching is not as bad as paralysis for example. If indeed the condition is completely benign then we have a huge opportunity to learn from it - to go into it and yield ourselves to something much larger than a few messed up muscle fibers and nerves. Someone once posted that they started to like their twitches and looked at them like a little massage. Interesting viewpoint I think. There can be a great power in yielding.

MarkS

I believe anxiety has played a big part in my experience of this condition, but i don't believe it caused the initial symptoms

given the number of people who found this site alone, I imagine there are many thousands who, because they are relaxed about their health, never googled twitching and never came up with the most awful (but least likely) possibility causing the twitching

I sure that the anxiety causes us to be hyper-vigilent about our bodies to the point that many of us have our radars half switched on the whole time

I know for one, I am extremely suggestable. If someone told me people with a J in their names are more likely to spontaeneously combust you would be reading about me in the newspaper by the time the weekend was over and my family would save a fortune on heating bills

I wonder if anyone has ever tried to harness this ability (?) many of us seem to have in the mind-over-matter department. I am thinking of going to a hypnotherapist to get them to suggest to my inner consciousness to lay off focusing on ill health and instead, focus on good health

Anyone ever gone down that route?

Julia