furballfury
Well-known member
All-
In late Februrary 2004, over 19 long months ago, my journey through this nightmare began. I remember like it was yesterday the stark fear of doing a Google search and finding countless hits on the dreaded disease. I still recall the weeks and months of pure hell convinced every strange sensation, twitch, myoclonic jerk, etc. had to mean the worst, as no "logical" explanation - no scientific fact - could possibly explain this. I was a goner.
On Wednesday, I visited my neuro for a routine follow-up (does it ever feel routine?) and some thoughts on a slightly stiff/sore shoulder. The single biggest piece of my recovery, I am convinced now, was learning to trust these physicians - in this case, a 28 year, published, neurologist outside of Washington DC, currently treating 3 *** patients and well versed on symptoms such as those we all share. It took me a while - forever I felt he must not know something, or he missed something, etc. I know now - he is thorough, compassionate, and well trained.
At his urging, and with some minor hesitation on my part, we conducted my fourth (and FINAL) EMG, some 11 months after my last, to confirm things were all normal. As I now know far too well, the clinical significance of those little, seemingly unconvincing tests you do (standing on toes, resistance against pressure,etc.) is vastly beyond what we want to believe when we are panicked, but I understand and can accept more now - and this time like all the others, all checked out well. That said, we both agreed an EMG/NCV on two limbs was prudent, if only to ensure my long-term piece of mind. Contrary to my initial 30 years of doubt, I now fully believe there is much compassion and understanding in most physicians, and intentions are pure.
Not surprisingly, all is perfectly normal. I know when I first came on here, those who had twitched, cramped, shuddered, felt weak, etc. for months and years were my lifeline - my only source of hope and sanity. To those of you new to this game, I am living proof it can and is going to be OK, and felt compelled to come on here to let you know, this can be, and in all liklihood is for virtually everyone on here, BENIGN. No different from a headache, cough, or rash. If you feel like you are different, the following list describes just some of the many symptoms, sensations, etc. that were so terrifying, unusual, hard to accept, etc. throughout this long journey:
Twitches everywhere - still get them ALL the time, though much less frequent and annoying now with peace of mind - chest, back, thighs, calves, feet, arms, face (esp. around lips after puckering), cheeks, tongue (the side of the tip of my tongue visibly rumbled right before my neuro's very eyes - he was wholly unconcerned), eyelids, eyes, groin, male parts, etc. Literally everywhere.
Shakes and "weakness" - some days just a constant internal quivering, weak feeling
Tremor - my fingers still have a very fine shake, especially when gripping something like a blueberry or coin between my thumb and forefinger - again, nothing sinister, although for weeks I was sure Parkinson's was setting in.
Muscle soreness, crampy feeling - sometimes calves felt as if they were going to cramp severly any minute...never did, but always sore. Somedays hard to walk. Left forearm and shoulderish area stiff, tight, a little sore off and on too...a nervy feeling in my forearm and wrist when gripping tightly. Thought for sure weakness setting in any day - never came.
Difficulty swallowing, sore, tight throat (not inside, but almost in the muscles themselves), neck stiffness, tenderness - convinced bulbar, and frankly this was the most difficult episode (or three) to shake, but once something relieved my anxiety/focus on it, it almost IMMEDIATELY subsided.
Finger twitches, myoclonus that woke me in the middle of the night, the buzzing, tingling, motor running in my leg feelings...all of them, off and on, all spelling something insanely sinister.
The list goes on. Blood work normal, lyme batteries (including advanced tests) normal, EMG normal, EEG normal, two MRIs normal, mercury normal, cortisol mildly low during one bout of post stress muscle soreness, but very minor out of range. Normal two weeks later.
At the end of the visit, and as the last appointment of the day, I thanked this neurologist from the bottom of my heart for his patience, thoroughness, and care over this difficult period. I reminded him that while the counseling I am now enjoying and new techniques I have learned to create a better, less stressful environment for myself is driving a true recovery and bright long-term outlook, all of us with chronic health worries need a solid foundation of elimination of physical possibilities before we can fully focus on the psychological side. I also asked him if he would be kind enough to spend some extra minutes with me for open dialogue to share with my "friends" struggling with the same questions. He agreed, though reminded me that this was conversational not clinical, and that there are rarely universal truths.
Q: Best guess - what is this all about? There is a growing school of thought that stress can and does produce a number of physical outcomes when introduced to the body in unusually extreme doses or more often chronic, long-term doses. In this regard, stress is not always mental, it can be physical (a number of weightlifters and runners apparently suffer from BFS like symptoms though they report stress free lives and above average health) or even viral (thus the link to possible viral connections). There is more science applied to the autoimmune impact from extended stressors on the body than ever before, and the delicate balance between a myriad of hormonal, cellular and physiological elements that play roles.
Why no BFS diagnosis for me? Many physicians are not ready to create a diagnosis for this pattern of symptoms as it does not fall into a classc medical syndrome pattern, ESPECIALLY THE OUTCOME. In other words, where most classic health syndromes take on a cause environment, a set of symptoms/signs, an expected chain of bodily reactions, AND AN EXPECTATION for medically significant alteration of the body from a non-impacted state, there is no real "significance" to the things that are going on inside of us from a clinical standpoint. Though this answer initially bugged me, it makes very good sense when you think about it - in reality, none of us report ailments that disable us, or create chemical instability (of course there may be some other unrelated cause in limited instances), nor any chronic medical condition that requires treatment to prevent worsening. So, unlike AIDS, SIDS, or other classic "syndromes", there is reluctance to "diagnose" this (think of it - what exactly is the true value of this diagnosis other than peace of mind...if we could just allow ourselves to accept it, that first "normal' neuro exam should offer the same peace of mind without a clinical diagnosis) as something specific.
Q: You know ***. You treat it now and have for a long time. What is the daignosis based on really, and is there uncertainty? Weakness. Clinical weakness. Those simple, meaningless neuro tests are as significant, if not more so, than the EMG in most cases. This is an illness of clinical decay - there are no grey edges. When decay occurs, you cannot rebuild it, at least not yet. Weakness - of the sort of tripping and falling repeatedly, loss of hand strength (dropping a coffee mug repeatedly), knees that won't support weight. These are the hallmark features. Then the EMG and other factors, such as fasciculations consistent with nerve death are relevant. Remember, there are still over 100 conditions that involve clinical weakness that aren't even ***. But in the absence of it, especially more than 2-4 weeks after first concern by patients, we begin to narrow the possibility down to next to zero with a normal clinical exam. In the absence of clinical weakness, and with widespread fasciculations, there is almost no possibility of *** with a normal EMG.
Normal EMG? What is that? EMG reads electrical charges in muscle cells. The electrivity has distinct patterns when disturbed, that help physicians create almost a muscle cell CT scan for diagnostic purposes. Again, much like with any other diagnostic test, there are nuances you are trained well to identify - muscle is not always "latent" (I forgot to ask what that meant exactly), you can have a benign twitch or spasm as the muscle is being examined, etc., but the presenting characteristics are distinct and well recognized by a trained neuro for abnormalities of any kind. He did not recommend people having EMG performed by GP's or ER docs if it can be avoided.
Can anxiety and stress really cause these physical symptoms? Most defintely - they did yours, and it can cause far worse problems if left unchecked. I find in patients I follow up with that more experience stranger, more worrisome symptoms when they first start to decline from the peak of an aroused state of concern, which then drives more concern, which then snowballs. He reminded me he felt strongly that was what was behind my arm/bulbar incident, which was my lowest point in May of last year. I had just come out of my first normal EMG exam, and it wasn't a day after that tremendous wave of relief set in that my body felt so weird and out of whack...hindsight - 20/20.
Lastly, anything that works to help reduce symptoms? Sleep and reduction of undue,chronic stress appear to be the best bet. Klonopin has proven to be the most effective short-term combatant for twitches and tremor, in cases where he needs to get someone "over the hump" for a week or two, but longer term, the addictive possibilities offset the diminishing pharmaceutical returns. No nutritive, mineral or supplement solution has produced consitent results. He asked me what worked best for me to give me 5 months or so of relatively good, twitch-free time lately. I told him without a doubt - removal of stress, and better mental preparation/acceptance of what it means, and doesn't, when my body starts acting up.
So, there you have it. Hopefully, a small but meaningful gift from one of the Class of 2004. I have been in touch with my classmates from the dark days...all are doing fine, still twitching and going through some ups and downs, but many more ups than downs. Many, like me, rarely venture by here much anymore, because you just feel that you've done what you can, and you see a new class of support building where you can no longer spend the time. But this was something I always dreamed of doing -- relaying tales of success and hope, once I crossed that long, dark path of fear and despair that seems to set in when the possibility of dreaded disease sidewinds you from nowhere. There are hundreds of idopathic symptoms that can be produced by chronic anxiety - do an online search on health anxiety symptoms and see what comes up. It is amazing how powerful the mind is, and experience has taught me that it indeed was largely mind over matter, with severe stress heightening very real, very scary symptoms. We all have a unique tale in many ways, but in this one important way - that we will truly be fine - we are all alike.
Best wishes to all for a speedy and strong recovery from this trauma. Smile, and take time out to enjoy the day and the gifts we have been blessed with. To those alums, like Garym and twitch_amy who were my lighthouses in the storm, many unwavering and forever lasting thanks. I only hope this returns the favor for some of the newer folks on here.
JG [/b]
In late Februrary 2004, over 19 long months ago, my journey through this nightmare began. I remember like it was yesterday the stark fear of doing a Google search and finding countless hits on the dreaded disease. I still recall the weeks and months of pure hell convinced every strange sensation, twitch, myoclonic jerk, etc. had to mean the worst, as no "logical" explanation - no scientific fact - could possibly explain this. I was a goner.
On Wednesday, I visited my neuro for a routine follow-up (does it ever feel routine?) and some thoughts on a slightly stiff/sore shoulder. The single biggest piece of my recovery, I am convinced now, was learning to trust these physicians - in this case, a 28 year, published, neurologist outside of Washington DC, currently treating 3 *** patients and well versed on symptoms such as those we all share. It took me a while - forever I felt he must not know something, or he missed something, etc. I know now - he is thorough, compassionate, and well trained.
At his urging, and with some minor hesitation on my part, we conducted my fourth (and FINAL) EMG, some 11 months after my last, to confirm things were all normal. As I now know far too well, the clinical significance of those little, seemingly unconvincing tests you do (standing on toes, resistance against pressure,etc.) is vastly beyond what we want to believe when we are panicked, but I understand and can accept more now - and this time like all the others, all checked out well. That said, we both agreed an EMG/NCV on two limbs was prudent, if only to ensure my long-term piece of mind. Contrary to my initial 30 years of doubt, I now fully believe there is much compassion and understanding in most physicians, and intentions are pure.
Not surprisingly, all is perfectly normal. I know when I first came on here, those who had twitched, cramped, shuddered, felt weak, etc. for months and years were my lifeline - my only source of hope and sanity. To those of you new to this game, I am living proof it can and is going to be OK, and felt compelled to come on here to let you know, this can be, and in all liklihood is for virtually everyone on here, BENIGN. No different from a headache, cough, or rash. If you feel like you are different, the following list describes just some of the many symptoms, sensations, etc. that were so terrifying, unusual, hard to accept, etc. throughout this long journey:
Twitches everywhere - still get them ALL the time, though much less frequent and annoying now with peace of mind - chest, back, thighs, calves, feet, arms, face (esp. around lips after puckering), cheeks, tongue (the side of the tip of my tongue visibly rumbled right before my neuro's very eyes - he was wholly unconcerned), eyelids, eyes, groin, male parts, etc. Literally everywhere.
Shakes and "weakness" - some days just a constant internal quivering, weak feeling
Tremor - my fingers still have a very fine shake, especially when gripping something like a blueberry or coin between my thumb and forefinger - again, nothing sinister, although for weeks I was sure Parkinson's was setting in.
Muscle soreness, crampy feeling - sometimes calves felt as if they were going to cramp severly any minute...never did, but always sore. Somedays hard to walk. Left forearm and shoulderish area stiff, tight, a little sore off and on too...a nervy feeling in my forearm and wrist when gripping tightly. Thought for sure weakness setting in any day - never came.
Difficulty swallowing, sore, tight throat (not inside, but almost in the muscles themselves), neck stiffness, tenderness - convinced bulbar, and frankly this was the most difficult episode (or three) to shake, but once something relieved my anxiety/focus on it, it almost IMMEDIATELY subsided.
Finger twitches, myoclonus that woke me in the middle of the night, the buzzing, tingling, motor running in my leg feelings...all of them, off and on, all spelling something insanely sinister.
The list goes on. Blood work normal, lyme batteries (including advanced tests) normal, EMG normal, EEG normal, two MRIs normal, mercury normal, cortisol mildly low during one bout of post stress muscle soreness, but very minor out of range. Normal two weeks later.
At the end of the visit, and as the last appointment of the day, I thanked this neurologist from the bottom of my heart for his patience, thoroughness, and care over this difficult period. I reminded him that while the counseling I am now enjoying and new techniques I have learned to create a better, less stressful environment for myself is driving a true recovery and bright long-term outlook, all of us with chronic health worries need a solid foundation of elimination of physical possibilities before we can fully focus on the psychological side. I also asked him if he would be kind enough to spend some extra minutes with me for open dialogue to share with my "friends" struggling with the same questions. He agreed, though reminded me that this was conversational not clinical, and that there are rarely universal truths.
Q: Best guess - what is this all about? There is a growing school of thought that stress can and does produce a number of physical outcomes when introduced to the body in unusually extreme doses or more often chronic, long-term doses. In this regard, stress is not always mental, it can be physical (a number of weightlifters and runners apparently suffer from BFS like symptoms though they report stress free lives and above average health) or even viral (thus the link to possible viral connections). There is more science applied to the autoimmune impact from extended stressors on the body than ever before, and the delicate balance between a myriad of hormonal, cellular and physiological elements that play roles.
Why no BFS diagnosis for me? Many physicians are not ready to create a diagnosis for this pattern of symptoms as it does not fall into a classc medical syndrome pattern, ESPECIALLY THE OUTCOME. In other words, where most classic health syndromes take on a cause environment, a set of symptoms/signs, an expected chain of bodily reactions, AND AN EXPECTATION for medically significant alteration of the body from a non-impacted state, there is no real "significance" to the things that are going on inside of us from a clinical standpoint. Though this answer initially bugged me, it makes very good sense when you think about it - in reality, none of us report ailments that disable us, or create chemical instability (of course there may be some other unrelated cause in limited instances), nor any chronic medical condition that requires treatment to prevent worsening. So, unlike AIDS, SIDS, or other classic "syndromes", there is reluctance to "diagnose" this (think of it - what exactly is the true value of this diagnosis other than peace of mind...if we could just allow ourselves to accept it, that first "normal' neuro exam should offer the same peace of mind without a clinical diagnosis) as something specific.
Q: You know ***. You treat it now and have for a long time. What is the daignosis based on really, and is there uncertainty? Weakness. Clinical weakness. Those simple, meaningless neuro tests are as significant, if not more so, than the EMG in most cases. This is an illness of clinical decay - there are no grey edges. When decay occurs, you cannot rebuild it, at least not yet. Weakness - of the sort of tripping and falling repeatedly, loss of hand strength (dropping a coffee mug repeatedly), knees that won't support weight. These are the hallmark features. Then the EMG and other factors, such as fasciculations consistent with nerve death are relevant. Remember, there are still over 100 conditions that involve clinical weakness that aren't even ***. But in the absence of it, especially more than 2-4 weeks after first concern by patients, we begin to narrow the possibility down to next to zero with a normal clinical exam. In the absence of clinical weakness, and with widespread fasciculations, there is almost no possibility of *** with a normal EMG.
Normal EMG? What is that? EMG reads electrical charges in muscle cells. The electrivity has distinct patterns when disturbed, that help physicians create almost a muscle cell CT scan for diagnostic purposes. Again, much like with any other diagnostic test, there are nuances you are trained well to identify - muscle is not always "latent" (I forgot to ask what that meant exactly), you can have a benign twitch or spasm as the muscle is being examined, etc., but the presenting characteristics are distinct and well recognized by a trained neuro for abnormalities of any kind. He did not recommend people having EMG performed by GP's or ER docs if it can be avoided.
Can anxiety and stress really cause these physical symptoms? Most defintely - they did yours, and it can cause far worse problems if left unchecked. I find in patients I follow up with that more experience stranger, more worrisome symptoms when they first start to decline from the peak of an aroused state of concern, which then drives more concern, which then snowballs. He reminded me he felt strongly that was what was behind my arm/bulbar incident, which was my lowest point in May of last year. I had just come out of my first normal EMG exam, and it wasn't a day after that tremendous wave of relief set in that my body felt so weird and out of whack...hindsight - 20/20.
Lastly, anything that works to help reduce symptoms? Sleep and reduction of undue,chronic stress appear to be the best bet. Klonopin has proven to be the most effective short-term combatant for twitches and tremor, in cases where he needs to get someone "over the hump" for a week or two, but longer term, the addictive possibilities offset the diminishing pharmaceutical returns. No nutritive, mineral or supplement solution has produced consitent results. He asked me what worked best for me to give me 5 months or so of relatively good, twitch-free time lately. I told him without a doubt - removal of stress, and better mental preparation/acceptance of what it means, and doesn't, when my body starts acting up.
So, there you have it. Hopefully, a small but meaningful gift from one of the Class of 2004. I have been in touch with my classmates from the dark days...all are doing fine, still twitching and going through some ups and downs, but many more ups than downs. Many, like me, rarely venture by here much anymore, because you just feel that you've done what you can, and you see a new class of support building where you can no longer spend the time. But this was something I always dreamed of doing -- relaying tales of success and hope, once I crossed that long, dark path of fear and despair that seems to set in when the possibility of dreaded disease sidewinds you from nowhere. There are hundreds of idopathic symptoms that can be produced by chronic anxiety - do an online search on health anxiety symptoms and see what comes up. It is amazing how powerful the mind is, and experience has taught me that it indeed was largely mind over matter, with severe stress heightening very real, very scary symptoms. We all have a unique tale in many ways, but in this one important way - that we will truly be fine - we are all alike.
Best wishes to all for a speedy and strong recovery from this trauma. Smile, and take time out to enjoy the day and the gifts we have been blessed with. To those alums, like Garym and twitch_amy who were my lighthouses in the storm, many unwavering and forever lasting thanks. I only hope this returns the favor for some of the newer folks on here.
JG [/b]
I believe this BFS is a warning sign... anxiety and stress can do worse things... so I need to stop freaking out over things that are not in my control. I need to learn to accept and move on. Easier said than done! But I'm working on it! Thanks again for your post!