Living with BFS: Sleep Struggles

[SGTThornley]

I have been diagnosed with bfs and my neurologist thinks it is directly related to post herpetic neuralgia, a post herpetic viral infection at the base of my spine. After 9 weeks of total fear with ALS/like symptoms I am now starting to learn how to live with bfs. It is extremely difficult to sleep. however if I take 1/2 miligram of xanax that seems to help.
Do any other bfs victims out there have any diagnosed connections to herpes?
My fasciculations are primarily localized in my lower body but occur constantly at a rate of 60 to 100 a minute!
My neurologist is Dr. Robert Miller in San Francisco, a leading regional expert on ALS. Does anyone know of a neurologist who specializes in bfs?
Tom Thornley

 

[PassionatePlatinumD]

I just started a "Herpes & BFS" topic in "Questions About BFS" then I came striaght to this. Quite a coincidence. You might want to post under my topic also. Some people may not look here.

Anyway, I was just reading a thread in this forum & someone mentioned some Doctors thought there were a connection, so I decided to start a topic on it.

I've had cold sores since I was a child & was exposed to genital herpes 15 years ago.

My twitcing started almost 3 years ago. I had everything twitching. The arches of my feet have been withering & popping non-stop, 24/7, for those 3 years along with my calves.

When I get twitches in other parts of my body, which I probably get daily, I don't pay any attention ,because I know they will go away. They used to scare the heck out of me.

Now it's just my feet that concern me.

 

[LetsGoBucs]

Just FYI I also have had cold sores for many years. That is a form of herpes (simplex 2 I believe??). I wonder if it does have anything to do with the onset of bfs. I also am a teacher and am exposed to many germs
and often am sick with viruses and bacterial infections (nothing serious though!) Let me know if you find a correlation between bfs and herpes virus.

 

[Boop.BoopBoop1987]

This is a most interesting connection. I too have had cold sores for years. I take Valtrex because I get them so frequently. Consequently the cold sores have become almost nonexistent. Also my bfs is almost gone. If I remember correctly, I was not taking valtrex when the twitching started. Can't remember when I did start but I have thought all along that surely the antiviral valtrex would be good for the bfs since I had read that bfs might be related to a mystery virus. I wonder if my good results may be from the valtrex instead of the copper I've been touting so recently. Please note, I have been on the valtrex for quite some time, long enough not to make a direct correlation between my improvement and the valtrex, whereas, when I took copper supplements, I noticed an immediate improvement. I am still doing very well, with only the most minor of twitches occasionally. I will be following your information. Please keep us updated.

 

[Alonzo]

Yeah, this was already discussed in the "Questions about BFS" thread under the title "BFS and Herpes". Being that a huge percentage of the population has one form of Herpes or another, it is hard to pinpoint and there is no conclusive evidence (yet) other than one or two doctors that have theories about it. Saying Herpes is the cause because so many BFS'ers have some form of it, is like saying BFS is caused by a cold or flu. We ALL get colds and the Flu, so how can that be isolated? It can't unless the actual virus is found and can be replicated in numerous lab tests, otherwise it is a witch hunt just like Cold Fusion was (which has never been duplicated since it was first discovered), Sacchrin causing cancer, Nutrasweet causing brain cancer, cell phones causing brain cancer, Estrogen causing breast cancer and so on... no concrete evidence saying one way or the other. First studies say one thing and a few years later, it all gets revoked because another study showed otherwise.

Don't get me wrong, I'm not saying it couldn't be the case with Herpes and BFS... I'm just saying it needs to be studied more to be conclusive and being that SO many people have Herpes, it is going to be difficult. However, a lot of people that believe they don't have Herpes, actually do. If you've ever had a cold sore, the Chicken Pox or anything like that at ANYTIME in your life, even if it was just once and it has never come back (cxold sores), you have it! No if's, and's or but's about it. It does not go away once you have been exposed to it. Let's see what becomes of some of these studies out there on BFS. We may be surprised at what the actual cause really is, IF they ever find it at all.

 

[Mia]

I have two close relatives and one friend who have to contend with shingles every now and then (same virus as chicken pox, herpes, cold sores). They were told that shingles are brought on by stress, and I believe that if you look shingles up in most medical textbooks, stress is cited as the cause. Many of us are also told that BFS is caused by stress. Personally, I think it's just a coincidence that herpes and BFS are being linked. Just the same, the truth is out there somewhere, and I'm curious to see what the actual cause of BFS is.

 

[Alonzo]

My wife has had SLE (a bad form of Lupus) for the past 20 years and on that, she has had shingles several times, tot he point where it could have been life threatening. She has no stress at all but because of the Lupus, she has (or had now because she went throuigh the "cure") a weak immune system. She has never had shingles when she wasn't having a flare-up, so every time her blood and immune system was "off", she would get it. Stress can't be the only reason you get shingles. Just like regular herpes, cold sores are called that because they "usually" come-out during a cold, hence the weaker immune system at that time. Most people with genital herpes get outbreakes during bouts of the flu, colds or anytime their immune system is low or compromised. yes, stress can trigger all sorts of things, including Lupus flare-ups on occasion) but we can't rely on it being "the" source of everything.

 

[Mia]

Thanks for the clarification, Aaron. It gets a bit frustrating when "stress" keeps being blamed for so many conditions. A weakened immune system makes perfect sense.