Any BFSers who didn't suffer from anxiety before?

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Any BFSers who didn't suffer from anxiety before?

Postby minime640 on August 17th, 2013, 9:49 pm

As a few of you know, I've been lurking here for 6+months and just recently started posting. I am not personally the BFS sufferer, but my husband starting having these symptoms (technically more BFCS since he experiences a lot of cramping in addition to twitching) this past November after coming down with what seemed like the flu (turned out to be Epstein Barr/mono).

Anyway, I have over my months of lurking noticed that it seems that most BFS sufferers have a history of and that is considered to be one of the major causative factors. My husband had no such history. No one would ever have described him as anxious. In fact he was a rather easygoing person before all of this. However, once he started with the twitching (first symptom), severe insomnia (next symptom -and the only one that has actually improved since the beginning), cramping, foot pain, fatigue, etc. he has certainly become much more anxious, wondering what happened to him and to the active normal life he used to have. First he worried that there was something really bad wrong with him, and since EMG and such indicated it was benign, he just worries that he will never feel better. It bothers him that he was a person who never took any medication or even supplements (I swear he took maybe 4 Advil a year and that was about it) and now he's on antivirals (for the still raging Epstein Barr infection), klonopin, and gabapentin not to mention various supplements (he was deficient in Vitamin D and B12, finds magnesium helps with the cramping, etc.). He hates that he has had more doctor visits this year than the 14 previous years we've been together combined. So it seems that this condition has certainly precipitated anxiety for him..

So I guess I'm just curious if any of you did not suffer from anxiety previously?
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Re: Any BFSers who didn't suffer from anxiety before?

Postby Arkansan on August 17th, 2013, 10:22 pm

That virus and its relatives is unpleasant company and I would not be surprised if that had something to do with his symptoms. Also you said he had Vitamin D and B deficiency? Those can certainly cause all sorts of quirky neurological symptoms if they are at sub optimal levels. Try taking a D3 supplement, and a B complex, also improper magnesium levels can have an effect on your ability to absorb vitamin D. I hate to hear that he is suffering as I know how much this can ruin your peace of mind. Hopefully one the virus is under control his symptoms may improve.
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Re: Any BFSers who didn't suffer from anxiety before?

Postby Yuliasir on August 17th, 2013, 10:51 pm

Hi Minime,
I would like to say that on my point of view BFS is not always strikes anxious persosns only but usually comes out after a big stress. What is big and what is stress is very personal. I have seen here fellows who developed symptoms after family deaths, marriage, labours (both moms and dads), severe infection, entering the colledge, moving to another country or state or even to another city in the same country, after a road accident, etc, etc. So no matter if a person was anxious before or not, or how long it suffers from anxiety if so. On my point of view anxiety only a) makes benign outcome more probable compared to any twitches coming out of the blue without any previous stress factor: b) makes progress towards healing more diffcult, especially if this is untreated anxiety.

I have seen a few people with mononucleosis (one of them was my friend who spent three weeks in a hopsital then) and I can say that on my point of view it is severe enought to cause stress resulting in BFS without previous story of anxiety.
So you can remind your husband that his BFS is actually a result of huge stress he survived and slowly he would become Ok and he would do good thing to his body and mind just allowing himself to be a pills eater for quite a time (especially considering that adults usually tolerate Epstein-Barr virus ways more worse than children and having any childhood infection in the age above 25 is a real kick, it is true even for smallpox and measles, not saying about mononucleosis).

Wish you both a good relief
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Re: Any BFSers who didn't suffer from anxiety before?

Postby garym on August 18th, 2013, 8:23 am

minime640 wrote:
Anyway, I have over my months of lurking noticed that it seems that most BFS sufferers have a history of and that is considered to be one of the major causative factors.


I actually couldn't disagree with this statement more.....After years of research into bfs, I for one 100% believe that bfs, with true fascics on emg isn't caused by anxiety at all. I've also been told that by some of the top neuro's in the U.S. Now there is no question that most people with bfs do suffer from extreme anxiety as a result of the condition, but in my opinion and my case, anxiety was not a precursor to the condition. There are many people here that will disagree with me, and that's ok.

he just worries that he will never feel better. It bothers him that he was a person who never took any medication or even supplements (I swear he took maybe 4 Advil a year and that was about it) and now he's on antivirals (for the still raging Epstein Barr infection), klonopin, and gabapentin not to mention various supplements (he was deficient in Vitamin D and B12, finds magnesium helps with the cramping, etc.). He hates that he has had more doctor visits this year than the 14 previous years we've been together combined. So it seems that this condition has certainly precipitated anxiety for him


I can relate to this. I never took medicine, and ended up on a list similar to the above and saw more doctors in a short time than I had in all my life previously.......really *beep* me off. The Epstein Barr virus has to be dealt with but I would question why the gabapentin? Klonopin, I can see for the anxiety, but there are other less addictive choices out there. Obviously I'm not a doctor, but I personally started eliminating meds from my body and watched to see if my sxs worsened or changed. if they didn't get worse, I deemed that particular med unnecessary....this is a process to be worked through with his doctor, obviously.

I wish you and your husband luck.

Take care,
Gary
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Re: Any BFSers who didn't suffer from anxiety before?

Postby anita on August 18th, 2013, 8:56 am

I never believed (and never will) that fasciculations are caused by anxiety. I have a bit of a perfectionist-type personality, but I wasn't anxious, and never worried about my health previously. That's because I was well and had no reasons to worry much.
I do understand many people have had anxiety before this diagnosis, but anxiety is so common. However, everybody is different and I can only talk for myself. I did not have major anxiety before I got sick, but I do now. And I also got a bit depressed.

I really admire you for being so supportive of your husband :)

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Re: Any BFSers who didn't suffer from anxiety before?

Postby muppetdog on August 18th, 2013, 9:16 am

I had all my symptoms start to manifest after a bout with the shingles (in the same family as EVB). I can relate to the fatigue, pain and insomnia. I still am not right about 2 years after.

I did not have anything that remotely resembled anxiety before all my stuff started. I was really active. After all this, It is really hit and miss when I can exercise or do a lot of activities. I still have a week sometime where I have no idea what my body is doing and I have to just spend time on the couch.

So, he had EVB diagnosed in November and the EVB is still raging? I might get a second opinion on that one.

Klonopin, Gabapinten and antivirals? I might get a second opinion on that one.
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Re: Any BFSers who didn't suffer from anxiety before?

Postby minime640 on August 18th, 2013, 9:54 am

I saw the lab test titers myself on the EBV and 3 doctors agree it shows a still active infection. They consider it chronic EBV at this point, which antivirals have shown to help in some cases. See Dr. Montoya's work from Stanford.

The klonopin and gabapentin have helped with the symptoms as far as cramping and pain, and the klonopin helped with insomnia a lot. They are not long term however, neuro said maybe another few months, but he is on the lowest dose prescribed and only once daily for each.
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Re: Any BFSers who didn't suffer from anxiety before?

Postby muppetdog on August 18th, 2013, 10:04 am

See Dr. Montoya's work from Stanford


I have. That's good that you read his studies.

How long has he been on the antivirals? Has he shown any progress on those?

Good luck, I am really rooting for him. Keep us up to date, for sure.
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Re: Any BFSers who didn't suffer from anxiety before?

Postby SecretAgentMan on August 18th, 2013, 10:49 am

I personally believe that BFS is the result of several precursor conditions working against us including genetic traits and personality traits. The genetic traits determine how your body handles the physical, emotional, and energetic stress that we subject it to. The personality traits determine how healthily or unhealthily we channel that stress (physical, emotional, and energetic) to our bodies. Our genetic predisposition is obviously less outside of our control than our personality traits, but we do have influence into both areas I believe.

There majority of people on this board seem to have developed BFS after some sort of reaction to an illness, a reaction to a drug (like antibiotics or steroids), or a reaction to an intense emotional ordeal in their lives. I'm sure there are a few exceptions, but this probably covers most of us. What do all three of these things have in common? I believe they all are very stressful to our physical bodies. Although not emotionally stressful an illness or a drug that our bodies don't like can be very physically stressful and throw things out of whack. Just as equally a strong drawn out emotional ordeal in our lives exerts stress to the body just the same because of the chemical, neurological, and energetic response the body has to our emotional state. Our genetic predisposition seems to make the BFS crowd particularly susceptible for our nervous system to be the outlet for all of that stress. The energy has to go somewhere and our bodies dump it into the nervous system causing dysfunction. I also believe that this is why people feel better when they stress less because there is less stress being channeled or dumped into the nervous system.

I believe that I was able to recover because I found methods to find the trouble spots in my lifestyle that were contributing to my stress (physical, emotional, and energetic). I removed or mitigated the aspects causing physical stress and actively worked to handle my emotional stress in a healthy manner. When the burden was eased from my physical body I was able to heal and reverse the damage. I would not say that I was a stressful person before BFS, but when I did have stress I did not handle it very healthily. I would often over analyze situations and worry more than I should. Combined with my genetic predisposition to dump all of that energy into my nervous system is what eventually led to me manifesting BFS.

I suppose I will always have that genetic predisposition, but I'm a different person today than I was back in 2009/2010. I don't live the same way, I don't think the same way, and I don't act the same way. In nature, things always happen as a result of things always trying to find balance. I am much more healthily balanced today. This is why I post on diverse areas. I don't just focus on diet, meditation, attitude, or any other one 'silver bullet'. In order to find balance you need a balanced approach. Anyway, that's my take on BFS...
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Any BFSers who didn't suffer from anxiety before?

Postby chrissi on August 18th, 2013, 12:57 pm

I agree with SAM :mrgreen: . But of course there are cases in which other factors play a role. Mine was brought on by a virus, but I got rid of it by a complete lifestyle change so that must sound kind of weird, but it worked.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Any BFSers who didn't suffer from anxiety before?

Postby leaflea on January 8th, 2014, 9:06 pm

If anyone is still reading this, I personally was never an anxious person. I have always been very laid back, easy going...However, a prolonged period of a series of life and real health stressors did precede my twitching. I do admit to a history of health anxiety, exclusive to health fears. How this is related to bfs I am not sure, but it certainly seems to be common to a large subset of us (at least the ones of us on this board, who are anxious enough google and research and post about it etc). I don't think I'd have had any ALS fears if it hadn't been for google, yet think my anxiety would have been higher anyway. However, having the twitching in common with ALS made my health anxiety go to places I had never even conceived. Importantly, I have also developed more of a general anxiety with it, physically and emotionally I feel more on edge all the time. My opinion is that whatever causes the twitches also causes anxiety even if ALS was not even a consideration, it is part of the syndrome. That is why I find any correlation with magnesium depletion to be very interesting. Magnesium deficiency can be caused by anxiety and also causes anxiety. Magnesium is called the "calm mineral" and I'm trying to get as much of it as I can, but it takes a long time to replenish. I feel about 10% better than over a month ago when I started. Interestingly, today I took a 1/2 klonopin tab before my long-awaited neuro appointment I was over the top anxious about. Within a half hour I felt better than I have in months, fewer twitches and that edgy feeling gone. I know it is not any kind of a long term drug to be on, but found the dramatic result fascinating. I talked to the neuro about it today and he agrees there is an association with bfs and anxiety but it is "a case of the chicken and the egg." I simply think they just plain go together. I am going to work on non-pharmaceutical remedies for the anxiety - relaxation, mediation, magnesium etc. in order to get my old self back and be able to cope with the anxiety that comes with these twitches. I predict the anxiety will stay as long as the twitches stay even though the ALS fear is gone (as of today and the good neuro exam) If the syndrome won't go away, I need to figure out a way to deal with the whole package.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Any BFSers who didn't suffer from anxiety before?

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