My Story (Very long, but meant to help)

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Postby Tui on November 13th, 2007, 11:09 pm

Thank you for posting your story.

One thing that grabbed my attention was your Doctor saying how "people often want a quick fix" and this is why Doctors prescribe drugs.

Plus they don't have time to sit with you and provide counselling. They've got 15 min to get you in and out of there. If you go to a neuro they've got an hour or hour and a half, but the way this time is to be used is already pre-determined with all the tests and questions they need to ask.

So true. And so many of us here, including myself, are guilty of either giving up too early when trying to change our lifestyle, reduce stress and help ourselves, or trying drugs in hope that they will give us that quick fix.

For some reason we refuse to believe that some things just take a long time and patience, and if they don't get fixed here and now (like going to a dentist with a toothache and coming out pain free), we've got a "symptom" and it's here to stay with us until we die.

Well, for one, I admire you and applaud you for not giving up and for getting counselling and helping yourself. For not taking drugs hoping that they will do wonder. It's amazing that most of us are happy to spend $$$ on doctors just so they can tell us what we already know... but when someone offers alternative help for $20 we think they're a scam artist.

While I do think that some of us here have BFS as a result of another ailment, I also think that anxiety can cause other ailments which can in turn cause BFS. My Dr said to me the first time I went that she thinks my symptoms are caused by anxiety. She also said that anxiety is a real symptom, not just something in my head, and can cause a number of things to go wrong with our bodies. She recommended a relaxation massage.

Of course, my anxiety was so far ahead at the time that I dismissed her comments as rubbish and continued to believe that there's something horribly wrong with me.

My BFS started with an eye twitch when I was on a holiday and I read some upsetting news through an email. The twitch would not subside for a week but because I had no regular access to the Internet I couldn't google. Someone said it's a vitamin B deficiency, I believed them and the twitching went away.

When I arrived home I went through a number of other stressful episodes: I was jet lagged, had to go back to the job I hated, had to move from my apartment, it was winter and I felt unhappy. My eye started twitching again but this time I had endless resources to google, and so I did. And so I read about A**, M*, brain tumours, etc. And so I started to get an array of other symptoms: body wide twitching, buzzing, pins and needles, fatigue, visual disturbances, floaters, constipation, fungal infections, tinnitus, etc etc etc...

Not all at once but new symptoms would gradually appear. And of course my anxiety grew and grew. I could not concentrate on work, I cried.

Then I came across Threelac because of my fungal infections, started taking it and it has helped not only get rid of constant thrush but also it's reduced my twitches. But I can't help thinking that the reason I had fungal infections is because anxiety has affected my immune system.

Anyway I'm doing much better (hardly any twitches), but still have flare ups which cause my anxiety levels to peak. I will now try and deal with that and find a way to be truly OK even if I do get a twitch here and there.

Thanks again.
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Postby Angie on November 13th, 2007, 11:09 pm

lucy wrote: I just take issue with someone trying to convince evryone here that they have some big autoimmune problem for life, esp. when there is much evidence against that.

Lastly, the sites that you reference are few and far between. Physical abnormalites on tests can be seen in many people with no medical problems. Many factors can affect tests.


The thing is Lucy that:

1) My psychologist said that my symptoms could not be caused by anxiety. She said that anxiety can cause an eye twitch or something small like, not the tremors, jolts, mass fascicualtions and other things I was experiencing. So, for me that was evidence that there is a good indication that many of the more severe symptoms we may display here have underlying medical cause that should be addressed even if it's benign. I'm not sure what you are referring to when you say that there is evidence that many of us don't have an autoimmune issue either. Autoimmune conditions are hard to diagnose.

2) Since at least 1948, there has been research into this syndrome and the symptoms associated with it. I just don't want people to be confused like I was when I first got here when most people said that the symptoms I had were caused by anxiety when I knew they weren't, but I had to find out mostly on my own that what I have is a medical condition that can be treated. That may not be the case for you, and I wish anyone well who has issues with anxiety and hope that they get it treated for it and never have fasciculations again.

3) This condition, as is the case for CFS, IBS and many cases of arthritis, are cases based on exclusion, meaning there is no discernable cause for patient symptoms, but the symptoms are there none the less. Many people here have overlapping autoimmune conditions which you will see if you spend enough time on here, too.

4) Lastly, if anxiety could cause all of the crazy symptoms many of us experience I think this condition would be a lot more well known and commonplace, as there is a great deal of stress and anxiety in everyday living. Other than the 3,000 or so people on this site however I've never heard of anyone experienceing widespread fasciculations like I did after being severely ill.

Maybe you don't have an autoimmune condition and maybe others on the site don't as well. I trust in your ability to judge for yourself what works for you. I just have made it one of my purposes since getting this condition to get the word out that it may be a medical condition for many people and it can be treated successfully, because there were a few people on this site who did that for me and to whom I am eternally grateful. It gave me y sanity and health back.

I appreciate your kind words Lucy even if we disagree, and hope that whatever method of treatment you use, that it helps you cope with the symptoms most effectively.

Take Care,
Angie
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby JMan on November 13th, 2007, 11:58 pm

I agree with Angie and I think there is something physiological that underlies our BFS conditions--at least for many of us. Something made us google the first time. For me it was when I started getting tingling in both of my arms (after having some weird symptoms with my eyes). The twitching started about 2 weeks later. I didn't even know what ALS was until well after the tingling started in my arms and I did the internet research. I thought I might have MS prior to that. I can be calm and having a fabulous day (on top of the world) and my legs will start doing their weird little vibrating. Anxiety makes the underlying benign condition a whole lot worse, but for many of us (myself included) it is not the root cause but an exacerbator thereof. As a prior military guy I have been under intense, intense pressure during extended periods of my life, and I never twitched a bit, never tingled, never buzzed. Some switch was engaged last April (I suspect as the result of taking CIPRO for 3.5 weeks) and I have been twitching, buzzing and having all sorts of strange symptoms ever since. I'm siding with Angie and Kit on this one. Its not even a close question.

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Postby kevintwister on November 14th, 2007, 12:29 am

alive and twitching wrote:1) My psychologist said that my symptoms could not be caused by anxiety. She said that anxiety can cause an eye twitch or something small like, not the tremors, jolts, mass fascicualtions and other things I was experiencing.


Boy Angie, I strongly disagree with your psychologist. That is just BAD information which reminds me of my anxiety therapist telling me how much "deprogramming" she had to do on many of her clients due to bad info given by other psychologists and psychiatrists. An overstressed body can produce a laundry list of horrible symptoms. Yes, I had tremors, jolts, mass facs and let me add to that list insomnia, electric shock feelings, body aches, cramping in my legs, weird nerve pains (one under my thigh bone lasted for weeks and I thought it would never go away), muscle tightness mainly in my legs, flu like symptoms, back problems, stomach problems, digestive problems like IBS, carpal tunnel type symptoms, exercise intolerance, tingling all over, numbness in my limbs, odd rushes through my body, weakness all over, no appetite, freak out sensations, feelings that I was going crazy and I am sure I could go on if I really thought about it. I have hardly any symptoms now a year into my recovery. (However I expect a few to come back for a day or 2 after reliving all of this today on this board)

Here is a laundry list from the Anxiety Centre (these people have been researching this disorder for years) ...

Blanching (looking pale, loss of color in the face or skin)
Blushing, flushed face, flushed skin, blushing, red face or skin
Body temperature increase or decrease
Burning Sensations throughout the body
Choking
Chronic Fatigue
Clumsiness, feeling clumsy
Disorientation
Dizziness
Dizzy
Electric shock feeling
Excess of energy, you feel you can’t relax
Falling sensation, feel like your are falling even though you aren't
Feel like you are going to pass out or faint
Feeling cold or chilled
Flu like symptoms, general malaise
Flushed face, red face, flushed skin
Heart palpitations, racing heart
Hyperactivity, excess energy, nervous energy
Increased or decreased sex drive
Infection - increased infections, persistent infection
Muscle twitching
Nausea
Nausea vomiting
Neck, back, shoulder pain, tightness/stiffness
Night sweats, waking up in a sweat, profusely sweating at night
No energy, feeling lethargic, tired
Numbness
Numbness tingling, numbness and tingling
Numbness and tingling, and other skin sensations on hands, feet, face, head, or any other places on the body
Persistent muscle tension, stiffness
Sexual Dysfunction, sexual uninterest
Skipped heart beats
Sore or tight scalp or back of the neck
Startle easily
Sweating, uncontrollable profuse sweating
The floor feels like it is moving either down or up for no reason
Trembling or shaking
Urgency to urinate, frequent urination, sudden urge to go to the washroom (similar to urinary tract or prostrate infection symptoms)
Warm spells
Weak - feel weak, weakness, low energy, light, soft, like you may faint
Weak legs, arms, or muscles
Weight loss, weight gain
Chest pain or discomfort
Concern about the heart
Feel like you have to force yourself to breath
Find it hard to breath, feeling smothered, shortness of breath
Frequent yawning to try and catch your breath
Heart Palpitations – beating hard or too fast, rapid heartbeat
Heart - Irregular heart rhythms, flutters or ‘skipped’ beats, tickle in the chest that makes you cough
Emotions (see mood)
Fears
A heightened fear of what people think of you
Afraid of being trapped in a place with no exits
Constant feeling of being overwhelmed.
Fear of being in public
Fear of dying
Fear of losing control
Fear of impending doom
Fear of making mistakes or making a fool of yourself to others
Fear of passing out
Fear that you are losing your mind
Fears about irrational things, objects, circumstances, or situations
Fears of going crazy, of dying, of impending doom, of normal things, unusual feelings and emotions, unusually frightening thoughts or feelings
Heightened self awareness, or self-consciousness
Need to find nearest washrooms before you can feel comfortable
Need to seat near exits
Burning, itchy, tight scalp
Dizziness
Dizzy
Dizziness or light-headedness
Frequent headaches, migraine headaches
Feeling like there is a tight band around your head, pressure, tightness
Head, neck or shoulder pain, tightness/stiffness
Giddiness
Numbness
Numbness tingling, numbness and tingling
Shooting pains in the face
Shooting pains in the scalp or head
When you close your eyes you feel like are beginning to, or will, float upwards
Sore jaw that feels like a tooth ache
TMJ (Temporo-Mandibular Joint) - clenching of the jaw or grinding of the teeth
Hearing
Frequent or intermittent reduced hearing or deafness in one or both ears
Low rumbling sounds
Ringing in the ears, noises in the ears, noises in the head
Afraid of everything
Altered state of reality, consciousness, or universe feeling
Deja Vu, a feeling like you've done or experienced something before
Depersonalization
Derealization
Desensitization
Difficulty thinking, speaking, forming thoughts, following conversations
Fear of going crazy
Fear of losing control
Fear of impending doom
Feelings of unreality
Frequent feeling of being overwhelmed, or that there is just too much to handle or do
Having difficulty concentrating
Nightmares, bad dreams
Obsession about sensations or getting better
Repetitive thinking or incessant ‘mind chatter’
Trapped in your mind feeling
Underlying anxiety, apprehension, or fear
You often feel you are carrying the world on your shoulders
Mood / Emotions
Always feeling angry and lack of patience
Depression
Dramatic mood swings (emotional flipping)
Emotionally blunted, flat, or numb
Emotional "flipping" (dramatic mood swings)
Emotions feel wrong
Everything is scary, frightening
Feeling down in the dumps
Feeling like things are unreal or dreamlike
Frequently being on edge or 'grouchy'
Frequently feel like crying for no apparent reason
Have no feelings about things you used to
Not feeling like yourself, detached from loved ones, emotionally numb
Underlying anxiety, apprehension, or fear
You feel like you are under pressure all the time
A ‘tinny’, ‘metallic’ or ‘ammonia’, or unusual smell or taste
Aerophagia (swallowing too much air, stomach distention, belching)
Choking
Constant craving for sugar or sweets
Constipation
Diarrhea
Difficulty swallowing
Difficulty talking, pronouncing certain letters or sounds, mouth feels like it isn't moving right, slurred speech
Dry mouth
Feeling like you can’t swallow properly or that something will get caught in your throat
Feeling like your tongue is swollen
Frequent upset stomach, bloating, gaseous
IBS
Lack of appetite or taste
Lump in the throat, tight throat, something stuck in your throat
Mouth muscles twitching/jumping
Nausea
Nausea vomiting
Nausea or abdominal stress
Numbness
Numbness tingling, numbness and tingling
The thought of eating makes you nauseous
Tight throat, lump in throat
Tongue symptoms - Tingly, “stretched,” numb, frozen, itchy, “crawly,” burning, twitching, “jumpy,” aching, sore, or swollen tongue (when it isn’t).
Urgency to urinate, frequent urination, sudden urge to go to the washroom
Vomiting
Burning skin sensations, skin sensitivity
Numbness
Numbness tingling, numbness and tingling
Skin problems, infections, rashes
Difficulty falling or staying asleep
Frequent bad, bizarre, or crazy dreams
Hearing sounds in your head that jolt you awake
Insomnia, or waking up ill in the middle of the night
Jolting awake
Waking up in a panic attack
You feel worse in the mornings
Sight
Distorted, foggy, or blurred vision
Dry, watery or itchy eyes
Eye tricks, seeing things our of the corner of your eye that isn’t there, stars, flashes
Eyes sensitive to light
Spots in the vision
Flashing lights when eyes are closed
Your depth perception feels wrong
Touch
Burning skin sensations, skin sensitivity
Feeling cold or chilled
Numbness
Numbness tingling, numbness and tingling
Pain
Tingling, pins and needles feelings

Other symptoms are described as:
Being like a hypochondriac, muscle twinges, worry all the time, tingles, gagging, tightness in the chest, tongue twitches, shaky, breath lump, heart beat problems, head tingles, itchy tingling in arms and legs, and so many more.

In addition to these symptoms, you may also find yourself worrying compulsively about:
• Having a heart attack
• Having a serious undetected illness
• Dying prematurely
• Going insane or losing your mind
• Harming yourself or someone you love uncontrollably
• Being embarrassed or making a fool out or yourself
• Losing control
• Fainting in public
• Not breathing properly
• Choking or suffocating
• Being alone




4) Lastly, if anxiety could cause all of the crazy symptoms many of us experience I think this condition would be a lot more well known and commonplace, as there is a great deal of stress and anxiety in everyday living. Other than the 3,000 or so people on this site however I've never heard of anyone experienceing widespread fasciculations like I did after being severely ill.


You'd be surprised. When I started talking about my condition to friends from church and work I was stunned how many people told me that they or someone they knew had experienced similar problems currently or in the past. In the anxietycentre.com member forum almost every other person in there has complained about fascs in one form or another. However most tend to be obsessed with other symptoms that are bothering them worse than their fascs.

I was like Tui, once I started Googling I went to hell in a handbasket. I don't think I would have gotten anywhere near as bad as I would have gotten without the internet.

JMan, don't rule it out. Typically anxiety symptoms pop up later in life after years of someone not handling stress correctly. It could be a slow build up (show up much later in life) or a fast one (showing up early in life) depending on your life's experiences. You don't have to be feeling anxious at the time. I had days when I would be feeling fine then all of a sudden twitch twitch twitch, or vibrating, or pain. Of course I would react to that and it would just get worse.

Another real common person is woman within a year or 2 of having a baby. I can't tell you how many times I have seen that pattern. Just thought I would throw that in there if there are any new mothers here.
Former BFSer, here to help. BFSymptoms (not a syndrome) are symptoms of nervous system overstimulation. Got my life back thanks to those fine folks at anxietycentre.com whom taught everything I know about this condition.
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Postby whataprettyworld on November 14th, 2007, 5:05 am

http://www.minddisorders.com/Br-Del/Con ... order.html

The above link is quite safe to read and will not lead you to any disturbing information.

Just to clarify, anxiety can pretty much replicate any body sensation it wishes. Conversion Disorder can be brought on by stress and anxiety and is thought to be the mind suppressing negative emotions and 'converting' these into physical sensations. In some cases patients with conversion disorder can actually experience total blindness, total paralyisis and can even fall into a coma.....if it can do that I reckon buzzing, twitching and jolting are no problem for it.

Rather interestingly nearly all conversion disorders present as sensory and neurological in western culture whilst it nearly always presents as digestive in Africa etc....the thinking is that it replicates the very thing that the culture fears most.
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Postby whataprettyworld on November 14th, 2007, 5:26 am

Tui wrote:Thank you for posting your story.

One thing that grabbed my attention was your Doctor saying how "people often want a quick fix" and this is why Doctors prescribe drugs.

Plus they don't have time to sit with you and provide counselling. They've got 15 min to get you in and out of there. If you go to a neuro they've got an hour or hour and a half, but the way this time is to be used is already pre-determined with all the tests and questions they need to ask.

So true. And so many of us here, including myself, are guilty of either giving up too early when trying to change our lifestyle, reduce stress and help ourselves, or trying drugs in hope that they will give us that quick fix.

For some reason we refuse to believe that some things just take a long time and patience, and if they don't get fixed here and now (like going to a dentist with a toothache and coming out pain free), we've got a "symptom" and it's here to stay with us until we die.

Well, for one, I admire you and applaud you for not giving up and for getting counselling and helping yourself. For not taking drugs hoping that they will do wonder. It's amazing that most of us are happy to spend $$$ on doctors just so they can tell us what we already know... but when someone offers alternative help for $20 we think they're a scam artist.

While I do think that some of us here have BFS as a result of another ailment, I also think that anxiety can cause other ailments which can in turn cause BFS. My Dr said to me the first time I went that she thinks my symptoms are caused by anxiety. She also said that anxiety is a real symptom, not just something in my head, and can cause a number of things to go wrong with our bodies. She recommended a relaxation massage.

Of course, my anxiety was so far ahead at the time that I dismissed her comments as rubbish and continued to believe that there's something horribly wrong with me.

My BFS started with an eye twitch when I was on a holiday and I read some upsetting news through an email. The twitch would not subside for a week but because I had no regular access to the Internet I couldn't google. Someone said it's a vitamin B deficiency, I believed them and the twitching went away.

When I arrived home I went through a number of other stressful episodes: I was jet lagged, had to go back to the job I hated, had to move from my apartment, it was winter and I felt unhappy. My eye started twitching again but this time I had endless resources to google, and so I did. And so I read about A**, M*, brain tumours, etc. And so I started to get an array of other symptoms: body wide twitching, buzzing, pins and needles, fatigue, visual disturbances, floaters, constipation, fungal infections, tinnitus, etc etc etc...

Not all at once but new symptoms would gradually appear. And of course my anxiety grew and grew. I could not concentrate on work, I cried.

Then I came across Threelac because of my fungal infections, started taking it and it has helped not only get rid of constant thrush but also it's reduced my twitches. But I can't help thinking that the reason I had fungal infections is because anxiety has affected my immune system.

Anyway I'm doing much better (hardly any twitches), but still have flare ups which cause my anxiety levels to peak. I will now try and deal with that and find a way to be truly OK even if I do get a twitch here and there.

Thanks again.



This is such a hugely important and valid point!!

We all live in a want in now culture and expect a GP to fix us up and make us right in a heartbeat. It is a bit like an overweight person who has been eating junk food for 10 years and then expecting to eat fruit for a week and lose 3 stone.

From my understanding, anxiety can ramp up and set itself as your usual operating system...in short, you can be chronically anxious but just not realise it as you have become acclimatised to it, give that anxiety level to another person and they could be fried. Eventually, the anxiety level will increase to a level that forces the nervous system just to break down, hence all these sensations. This process could be years or even decades in the making.

I struggled to accept the anxiety thesis as I still felt bad after 4 months....4 long months. As I have now realised 4 months is nothing and it will take as long as it takes....I realised I was still eating rubbish and sleeping poorly but was concerned that I still wasn't right....heck, what right would I have to be right?? If I have done this to myself over the last 10 years it is going to take a while to correct and patience really is the key.
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Postby Angie on November 14th, 2007, 8:12 am

That list is way too long kevintwister. Maybe just being alive is dangerous to our well being. That's a pretty silly list, honestly. I think some of these "anxiety" places just need to pay their mortagage somehow or some PhDs are looking to fund their boats on our dime.

There are sites specifically for people with anxiety issues, but this isn't one of them, in my opinion. The research is there about this being a medical condition. It has been for years. Maybe not everyone here has one, but most of us do I'd say. The symptoms cause anxiety for sure and anxiety can cause an underlying medical condition to get worse.

If you can't trust an MD with this condition or former Marine, well then, I don't know what to tell you.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby paulreason on November 14th, 2007, 8:22 am

Thats great,but my fascics are caused by a disorder or desease that is very clear to me.For a doctor to say anxiety they are basically saying its nothing, because if it wasent anxiety then it must be something serious.Never trust a doctor who says anxiety they are filling in a medical grey area.
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Postby whataprettyworld on November 14th, 2007, 8:29 am

paulreason wrote:Thats great,but my fascics are caused by a disorder or desease that is very clear to me.For a doctor to say anxiety they are basically saying its nothing, because if it wasent anxiety then it must be something serious.Never trust a doctor who says anxiety they are filling in a medical grey area.


Can you explain that....I've read it a fair few times and the I cannot grasp the logic.
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Postby zekebcfs on November 14th, 2007, 8:52 am

I'm with Paul on this one eventhough the research is still out on autoimmunity but it is looking like more and more that everyday. However, I am not sure that it is the typical autoimmunity that most other sufferers of autoimmune disorders suffer.

Stress does play a role in making a bad situation worse but it does not cause the persistant years of twitching and cramping, stifness, tinglinig, electrical shocks etc etc. It is a medical condition. Just this weak I went to my neurologist who clearly admits that there is vast disagreement on BFS/BCFS/PNHE but they all agree that it is a medicl condition as in physiological not mental. Furthermore nobody knows what ICD diagnosis code to use and if you look carfully sometimes doctors will use the ALS code since insurance needs a code to process the bills and BFS/BCFS remeains in the very grey area of medicine. Does anybody here know what the medical ICD code is for BFS?

On another nore I would like to have input from those who have ever tried Trileptal...the 2nd generation Tegretol. Anyfeedback would be appeciated and sorry to post on another topic my very own question. I got a crampy finger OK :?
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Postby whataprettyworld on November 14th, 2007, 8:59 am

zekebcfs wrote:I'm with Paul on this one eventhough the research is still out on autoimmunity but it is looking like more and more that everyday. However, I am not sure that it is the typical autoimmunity that most other sufferers of autoimmune disorders suffer.

Stress does play a role in making a bad situation worse but it does not cause the persistant years of twitching and cramping, stifness, tinglinig, electrical shocks etc etc. It is a medical condition. Just this weak I went to my neurologist who clearly admits that there is vast disagreement on BFS/CFS/PNHE but they all agree that it is a medicl condition as in physiological not mental. Furthermore nobody knows what ICD diagnosis code to use and if you look carfully sometimes doctors will use the ALS code since insurance needs a code to process the bills and BFS/BCFS remeains in the very grey area of medicine. Does anybody here know what the medical ICD code is for BFS?


So, what is Paul saying....that BFS exists but that anxiety doesn't?

Yep, I can understand that there could be a debate between what both BFS and anxiety are, if they are different and how they could possibly interact with each other. My understanding of Paul's post seems to be that everyone who gets an anxiety dx off a GP is being fobbed off and that an underlying oraganic complaint is being missed :?
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Postby Richard on November 14th, 2007, 9:10 am

All,

I have a few comments about this.

I have find this very interesting.

I turned into a neurotic mess when my back herniation pushed hard on my nerve in my foot. This caused me to have numbness in my foot and leg. Some of which 3.5 years later has not gone away.

What really messed me up I think is the knowedge that my body was weak and was getting weaker. Before this I doubt I noticed aches and pains because I just simply ignored them.

Now, fast forward, a few years and I complained to a chiropractor about twitching in my left leg. Aftera while this guy shows me I also twitch in my right leg. Before that I really did not notice!

Fast forward another year or two and I find this web site. People talk about buzzing and I realize I buzz too. Before that I might have buzzed but not noticed.

Some people have written, truely I think, that people with BFS are hyper sensitive about their bodies.

Well I am not sure how to attack this. I DO have some physical health problems. I DO NOT believe what the doctor's say because so many of them have been wrong. I ON PURPOSELY shake my leg to cover up the twitching.

And yet if I honestly look at my legs under Neurontin, which I am not sure is doing anything HA. I twitch in my calves 1-2 times in 30 seconds. Both calves.

My problems is this. I keep trying to find a medical reason, which makes me think about this disorder. I shake my leg which stresses out my myscles further. I look at my legs in order to figure out what is going on.

All of these makes me worse, not better. But I am trying to scientifically diagnose and understand what is going on!

I don't know how to get off this merry-go-round. All I do know is I am messed up. :?

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Postby stevepaul on November 14th, 2007, 9:13 am

Blanching (looking pale, loss of color in the face or skin)
Blushing, flushed face, flushed skin, blushing, red face or skin
Body temperature increase or decrease
Burning Sensations throughout the body
Chronic Fatigue
Clumsiness, feeling clumsy
Disorientation
Dizzy
Electric shock feeling
Excess of energy, you feel you can't relax
Falling sensation, feel like your are falling even though you aren't
Feel like you are going to pass out or faint
Flu like symptoms, general malaise Increased or decreased sex drive
Infection - increased infections, persistent infection
Muscle twitching
Nausea
No energy, feeling lethargic, tired
Numbness
Persistent muscle tension, stiffness
Skipped heart beats
Sore or tight scalp or back of the neck
Startle easily
Sweating, uncontrollable profuse sweating
The floor feels like it is moving either down or up for no reason
Trembling or shaking
Urgency to urinate, frequent urination, sudden urge to go to the washroom (similar to urinary tract or prostrate infection symptoms)
Warm spells
Weak - feel weak, weakness, low energy, light, soft, like you may faint
Weight loss, weight gain
Chest pain or discomfort
Concern about the heart
Feel like you have to force yourself to breath
Find it hard to breath, feeling smothered, shortness of breath
Frequent yawning to try and catch your breath
Heart Palpitations – beating hard or too fast, rapid heartbeat
Emotions (see mood)
A heightened fear of what people think of you
Afraid of being trapped in a place with no exits
Fear of being in public
Fear of losing control
Fear of impending doom
Fear of making mistakes or making a fool of yourself to others
Fear of passing out
Fear that you are losing your mind
Fears about irrational things, objects, circumstances, or situations
Heightened self awareness, or self-consciousness
Need to find nearest washrooms before you can feel comfortable
Need to seat near exits
Frequent headaches, migraine headaches
Feeling like there is a tight band around your head, pressure, tightness
Giddiness
Shooting pains in the face
Shooting pains in the scalp or head
When you close your eyes you feel like are beginning to, or will, float upwards
Sore jaw that feels like a tooth ache
TMJ (Temporo-Mandibular Joint) - clenching of the jaw or grinding of the teeth
Hearing
Frequent or intermittent reduced hearing or deafness in one or both ears
Low rumbling sounds
Ringing in the ears, noises in the ears, noises in the head
Afraid of everything
Deja Vu, a feeling like you've done or experienced something before
Depersonalization
Derealization
Desensitization
Difficulty thinking, speaking, forming thoughts, following conversations
Fear of going crazy
Feelings of unreality
Frequent feeling of being overwhelmed, or that there is just too much to handle or do
Having difficulty concentrating
Nightmares, bad dreams
Obsession about sensations or getting better
Repetitive thinking or incessant 'mind chatter'
Trapped in your mind feeling
You often feel you are carrying the world on your shoulders
Mood / Emotions
Always feeling angry and lack of patience
Depression
Dramatic mood swings (emotional flipping)
Emotionally blunted, flat, or numb
Emotions feel wrong
Feeling down in the dumps
Frequently feel like crying for no apparent reason
Have no feelings about things you used to
Not feeling like yourself, detached from loved ones, emotionally numb
You feel like you are under pressure all the time
A 'tinny', 'metallic' or 'ammonia', or unusual smell or taste
Aerophagia (swallowing too much air, stomach distention, belching)
Choking
Constant craving for sugar or sweets
Constipation
Diarrhea
Difficulty talking, pronouncing certain letters or sounds, mouth feels like it isn't moving right, slurred speech
Dry mouth
IBS
Lack of appetite or taste
Mouth muscles twitching/jumping
The thought of eating makes you nauseous
Tight throat, lump in throat
Tongue symptoms - Tingly, "stretched," numb, frozen, itchy, "crawly," burning, twitching, "jumpy," aching, sore, or swollen tongue (when it isn't).
Vomiting
Burning skin sensations, skin sensitivity
Skin problems, infections, rashes
Difficulty falling or staying asleep
Frequent bad, bizarre, or crazy dreams
Hearing sounds in your head that jolt you awake
Jolting awake
Waking up in a panic attack
You feel worse in the mornings
Sight
Distorted, foggy, or blurred vision
Dry, watery or itchy eyes
Eye tricks, seeing things our of the corner of your eye that isn't there, stars, flashes
Eyes sensitive to light
Spots in the vision
Flashing lights when eyes are closed
Your depth perception feels wrong
Touch
Burning skin sensations, skin sensitivity
Feeling cold or chilled

Pain
Tingling, pins and needles feelings
Other symptoms are described as:
Being like a hypochondriac, .

In addition to these symptoms, you may also find yourself worrying compulsively about:
• Having a heart attack
• Having a serious undetected illness
• Dying prematurely
• Harming yourself or someone you love uncontrollably
• Losing control
• Being alone


I did some washing and cleaned the list up by removing repeat items. I'm sure on a longer cycle the load would be even less. Do you have to become a member of the Anxiety Centre to view the research.
"The wonder of the world, the beauty and the power, the shape of things,
their colours, lights and shades; these I saw. Look ye also while life lasts."

Denys Pitchford Watkins
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Postby stevepaul on November 14th, 2007, 9:19 am

Tui wrote: While I do think that some of us here have BFS as a result of another ailment, I also think that anxiety can cause other ailments which can in turn cause BFS.


In other words your saying that BFS is caused by an ailment.
"The wonder of the world, the beauty and the power, the shape of things,
their colours, lights and shades; these I saw. Look ye also while life lasts."

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Postby zekebcfs on November 14th, 2007, 9:28 am

Paul has been around a while and from my understanding he has been in contact with one of the few doctors doing real research into BCFS/BFS/PNHE. I don't think he ever said that anxiety never cause and twitch or cramp. It is just that once you go through the level of medical testing BCFS/BFS/PHNE patients do then most of the time it is not stress related since a medication like Klonopin will take all your worries away even if you are under anesthesia. But that is not the case for many here. I am sure there are many here who could attribute their twitching to stress. I also fall into that camp in a small way. But I am not naturally a big reactor to stress. I also want to make sure that I do not come across as dismissing your views by any means since we really don't know what causes this illness. Everything is still a theory. Just look at CFS and how it has evolved from a virus to being triggered by all sorts of things from stress to the flu. Technically anything that is an assult on the body is a stress so if you mean stress in that regard I am all with you but not the traditional stress like I have project do in three days so I am going to twitch, cramp etc etc for the rest of my life. Make no mistake....stress is the amplifier of this illness! Borrowing from my background then if we cut the amplifier from the signal path then we should be able to drop the original signal closer the noise floor where we can call it stress if you want. In all honesty I would rather it be stress than autoimmunity and oddly enough I hope you are right and Paul is wrong but the evidence is mounting that hope rarely trumps medical fact.
Zekebcfs
"Keep them busy busy busy, back on the farm with the other animals." We are kept so busy with business (or busyness) that we do not understand or participate in the decisions and events that will crucially affect our future.
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