Seeking Help for Husband's BFS

Spartan221

New member
So thd backstory is that my 42 year old husband came down with what the neurologist deemed BFS during a bout of flu like symptoms last November. We have been struggling since then to deal and try to "fix" it with diet, supplements, etc. Another doctor tested him for Epstein Barr and CMV and he does have an active EBV infection with high titers and being as this all started with a high fever and sore throat it does seen to make sense. Regardless, I've been lurking in this forum for over 6 months, taking in whatever useful information I come across as my husband avoids reading about any of this since he doesn't want to freak himself out lol... My husband was always healthy and energetic and now he struggles to get through the day. He is on klonopin for the twitching and cramping, which helps, but really he just doesn't feel like he's getting any better and it takes an emotional toll on him. So for those of you that suffer from this condition, what kind of support would help you from your spouse/significant other? I am trying to help but am not sure what to do. I do all of the cooking and such for our modified paleo diet, but what else can I do?
 
Nothing. It's really that simple. You are doing everything you can. He just needs to come to grips with the situation. I've never even had a neuro appointment, but I'm managing to deal with it well. He just needs to realise that it's a mental battle that he needs to win. He's been diagnosed with BFS. He needs to realise that. As with many people here, the mental aspect is what makes it hard. The physical stuff is nothing compared to your brain whispering things to you. Have him see a psych if he has to. He's been twitching for 6 months. If it was anything worse, he would be struggling to do anything. You should make him come to these forums. For all of us this place is a sanctuary. You can relate so much better, when you're aware that other people are going through the EXACT same thing he is. He won't get better until he overcomes the mental aspect, which imo is the worst part of BFS - I can deal with the twitching, but I couldn't deal with the depression/feeling sorry for myself.
 
Thanks for your reply. I am certainly doing everything I can *think* to do, but not being the one with the condition, I have a different perspective obviously.The problem isn't that he thinks/fears he has "the disorder that shall not be named on here" or anything like that. He knows he doesn't have a degenerative neuro condition (however, BFS isn't really a true diagnosis, it just means they have excluded nerve damage/degeneration and don't know why someone is twitching). His fear is that he is never going to get better. If he was just twitching, that might not be such a big deal, but he also gets some pretty significant muscle cramping as well as pain in his feet and significant fatigue. This was a guy who could go go go all day and now it's all he can do make it through a day at work and then he struggles to find energy to play with our young kids when he gets home. So it's not that he still harbors some irrational fear that his EMG was wrong and that he really has that other thing. It's that he worries that he will feel the way he does now for the rest of his life. Thanks again and best of luck to you in your journey.
 
I think this is a fantastic post. The fact that you took the time to come on here and ask this question shows me that your husband is one lucky guy to have you in his corner. I agree that BFS is very much a mental battle. The frustration can be debilitating at times. According to the Mayo Clinic, the body's response to a virus or certain medications can trigger thisll condition. I asked them if I will ever get back to the way I was before this all started and they said, "It may suddenly stop one day, and it may not. In all likelihood it will wax and wane for the rest of your life depending on other factors like stress, exercise, caffeine, and so forth. But eventually you will most likely learn to accept the condition and it will become background noise." I hope this helps. -Matt
 
I think this is a fantastic post. The fact that you took the time to come on here and ask this question shows me that your husband is one lucky guy to have you in his corner. I agree that BFS is very much a mental battle. The frustration can be debilitating at times. According to the Mayo Clinic, the body's response to a virus or certain medications can trigger thisll condition. I asked them if I will ever get back to the way I was before this all started and they said, "It may suddenly stop one day, and it may not. In all likelihood it will wax and wane for the rest of your life depending on other factors like stress, exercise, caffeine, and so forth. But eventually you will most likely learn to accept the condition and it will become background noise." I hope this helps. -Matt
 
Echoing Matt...your hubby is extremely lucky to have you. Beating BFS is like 95% mental which is what nearly all veterans will tell you. It takes an emotional toll as long as one is fixated on the symptoms, which trying to "fix" them essentially does. Once focus on the symptoms is removed (ie: accepting them), along with reduced anxiety, then usually people improve and get on with life. Just be patient and supportive which is clearly what you already are. :D)
 
practically as fellows said the most important factor in treating BFS is that it takes long time to come at least to something similar to the person and condition before onset.BFS includes sudden stuck of fear. It includes sudden fatigue, tiredness, pains, weird sensation feelin gof lost control. I am at the age of your husband so we are about in the same shoes ;) Nobody would be the same after having BFS experience but many fellows here admit it is in fact a GOOD experience.As a spouse trying to help you may make a great benefit by helping him to keep daily schedule (enough and regular sleep is of utmost importance for healing), walking together if he likes, sharing physical activites. And just remember - he would be ok. Slowly.
 
I'll chime in and say that I think you're doing everything right. You're getting into the details so he doesn't freak himself out, which is great. You are not only supporting his dietary modifications but you're cooking and even participating. You are going above and beyond. The most important thing that you can do (as you are doing) is to just love him and be there for him. That's what my wife did for me and I don't think I could have made it through some of the tough times without her doing that. Keep up the great work!
 
you sounds like you are doing a lot of good things. I know one thing my wife has done really well since all this went south for me was she tries to keep me positive despite the mental toll. She herself is naturally positive and she constantly reminds me it does no good to be negative in my thinking regardless of the circumstances.keep being patient...hopefully things will start to get better soon for you both.
 
Thanks to all of you for your support and affirmation. I guess I've been on the right track, just staying positive and facilitating the improvements to our diet, etc. I respect all of you because I know what havoc this condition has wreaked on your lives since it has definitely been Kryptonite for my Superman ;). It's so hard for me to watch my love of nearly 15 years get knocked on his *beep* by this and I'm just trying to be whatever he needs right now! Thanks again to all of you and I will keep you all in my prayers.
 
I agree with AZ twitchy here. During the last 2 years I have accompanied many twitchers, and with a lot of those I had close personal contact during their extreme phases of anxiety. In my experience male BFS sufferers not only struggle with the anxiety about dying of ALS, but also ( especially when they are a father) from the mental struggle about being a burden to their family. Somehow the twitching can start a whole cascade of worst- case- scenarios in ther heads, and they put soooooo much pressure on themselves that they really damage their self esteem. And the worst thing: they often don't really want to talk about it with their wifes, because they think they have to pull themselves together and stop whining and solve this problem alone. So it is great that you are there for him. Always encourage him to talk about the fears he has, because a rational reflection is always better than those scenarios our anxious minds make up.
 
Hey there, I just wanted to chime in because this is an interesting topic. In fact, in my six years or so on this board I don't think I have ever seen a topic like this before. So if nothing else, thank you for keeping things interesting around here. :D) I think it is great that you are looking for ways to be a more helpful/supportive spouse. That really says a lot about you and a lot about the relationship you have with your husband. I think it is great that you are looking at the whole BFS thing from his perspective. Since lord knows that is the only perspective he will be able to look at it from for while.Here's the deal. The only real "cure" for BFS that I have ever seen is... well... for lack of a better term... it is that the person afflicted has to basically sack up. At a certain point they will have to learn to stop whining and being a crybaby, and they are going to have to get their mojo back and get back to the real world. I know that is kind of a harsh thing to say, but it is accurate. And I know this as well as anyone, because I was the most self centered little baby for about 18 months. I only thought about myself, because of my doom and gloom thoughts I completely shut myself off from the rest of the world and only focused on my own drama. Again, I know this is harsh, but sooner or later, your husband will learn that the only way to get past that stage is to just grow a pair. There is nothing anyone else can do, there is nothing his doctor can do, there is nothing his diet can do. Sooner or later, the "cure" is for him to wake up one morning and tell himself, okay this is stupid. Let's just deal with this sh*t and get back to business. Where's my wife and kids, let's go plan a vacation.However, and this is the good news, there is one great thing you can do along the way until that happens. And in my opinion this is a biggie.Don't let him focus his attention on the present. That is the absolute worst thing he can do, and I can tell you from experience of my own that that is EXACTLY what he is doing right now. All day long he is scanning his body and looking for weirdness. He is doing it 24 hours a day. It is all that he thinks about. He is scanning his body, he is comparing it to what it used to be like, he is obsessing and worrying that this is what he will always feel like. And depending on the severity of his depression over this, it will often lead to thoughts that border on a person being suicidal.Don't worry, I don't actively think that most BFS people are suicidal. But in our worst days, in our worst moments, there almost always comes a time when a newbie BFS person will think, "What if I am always like this? What if this never goes away? Do I really want to live like that the rest of my life?" And one they hit that stage, it usually means there will be some clinical depression involved.So here is my advice to you, as a spouse. It is the same advice I would have given to my own wife six years ago, when I was at the lowest of my lows. Don't let him focus on the NOW. Keep his mind focused on the future. Start planning a big trip together. Make some exciting plans for next summer, do something you never would have ordinarily done. Get him excited about something that is going to happen 6 months from now, or a year from now. Above all else, DO NOT LET HIM MOPE AROUND AND ONLY THINK ABOUT HIS SYMPTOMS. His symptoms are going to improve in time, that is just how BFS works. They improve when you don't just sit around and obsess over them 24 hours a day anymore. And it would be nice if you could kinda, speed that process along a little bit.So there is my advice. Don't let him just sit around and focus on the now. Make him focus on six months from now. Or a year from now. But don't do it in an obvious way, where he can tell you are distracting him. Get him legitimately excited about something fun that he has been looking forward to for a while. Get him to move out of that initial stage of depression. It is the best thing in the world for him, and if it works and he starts to feel better, then he might start to sack up and suddenly realize that he can control his symptoms simply by altering his perception and his state of mind. And then once that happens he is well on his way to feeling better about it all.Hope this helps. Your husband is very lucky to have you, by the way. Six years ago my wife's main concern was that I was lazy and I was forgetting to take out the garbage.
 
Thanks again to all of you; I appreciate the insight into the other side of things... AZ and Chrissi you guys are right on. It has definitely been tough on his ego as a man to not have the energy and stamina he used to have and to be the most mentally fragile he has ever been. Mario I definitely will try to get him focused on something in the future because you have certainly hit on something. I remember when this first started we would sit home on the weekends (because in the beginning he had terrible insomnia and he was barely functional a lot of the time and sitting home was TERRIBLE for his mental state. I keep us moving on the weekends now lol... We have an anniversary in a few months so maybe ill start getting him excited about a weekend away...
 

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