Anybody have any problems with muscle twitching? I've read about a few of you who devloped this at the time of infection, or shortly after. It comes and goes, and when it's coming it gets very pronounced and is constant. Since my infection, I developed muscle twitching, sometimes before an outbreak, sometimes not. It's mainly in the legs and is frequent, but occurs all over. The muscles are also often sore in my legs, and down into my feet. Tingling too. What is causing this in us and what's it's significance? What helps?
What you have is Benign Fasciculation Syndrome (BFS). Doctors aren't sure what exactly is causing the twitches, but Herpes is known to be one of the triggers. Somehow the herpes virus causes your nerves to go "haywire"...which in turn causes muscles to randomly twitch. There is no known cure, but there are medicines (like anti-anxiety medicines) which can lessen the symptoms.
Have you tried taking suppressive therapy to control the outbreaks? That might help. Other than that, do a search for "Benign Fasciculation Syndrome" and you'll find some good websites with info about it.
Apprecaite the reply. I'm familar with BFS. But I thought that BFS was when no cause could be found for the twitching? Who knows, either way, I suspect the twitching is still benign? Even when caused by herpes? What about progression? Does the twitching get more severe with time, or is the worst of it, or does it remain constant? It's always present. And my muscles are always so sore.. my neck hurts, head hurts, vision is blurry. This all came with the herpes. I even worry about the meningititis reoccuring. But mostly my legs, I'm having a lot of difficulty walking at times.. pain. No weakness. I have an appointment with an optical neurologist next week, hopefully lenses will correct my blurry vision. Valtrex clears my outbreaks, but doesn't seem to affect the other. Just looking for other's so that I won't feel so alone with all this. Thanks again.
Last edited by Let It Bleed; 11-04-2004 at 08:45 PM.
Hi, This is weird... I hope and think. Not sure yet, either way. Anyway, I was diagnosed with having Genital Herpes Simplex about a year ago... Ouch!! Funny, cos seriously I really have no idea how I could haved caught this!! or when for that matter! Anyway, It's bothered me and played up with my Nervous System Something cronic since... That is the conclusion I came to and I'm no Doctor. I got the first outbreak, bad, really hurt, but only one sore. The aches and pains were bad enough. All down my Thighs and in my Bum muscles - or Gluteas Maximus (if I spelt that correctly?)... Anyhow, was on Acciclovir and found that I got another outbreak, started taking it continously and hey presto, no visible outbreak, just the Aches and Pains or what I understand are called "Prodomes" (again Spelling?)... But means the onset or aches that you feel indicating that the Virus is trying to reactivate! Little git!.... Swapped to Famvir or Fasciclovir and this appeared to help for a while. About May this year, I started to get twitches in my muscles. I did not think anything of it as I work out in the Gym when I can and have had twitches before, although on and off. I would get a twitch if I worked out too hard for example, but ... a protein drink, some nutritious food and it would be gone overnight. These twitches were happening too often and the gaps were closing... Although random and everywhere. I was suffering with general fatigue too, or that's how I describe it. Feeling as though I was shattered (Muscle wise) if I was shopping or something... waking up and not feeling revived, even though I'd had a deep sleep. Then.... Cramping started, Muscles Spasms and my thighs started to really hurt causing me pain to walk. I also thought my knees were giving way on my and wondered if I had damaged them. Internal Tremor type feeling, a general feeling of instability gets me every now and then... and a rapid or what I think is a Thumping heartbeat when I lay to sleep.... I am worried too.... But I am convinced that the Herpes is more responsible for all this than it generally takes credit for. I am seeing a Neurologist on Thursday and Yes my Doctor also thinks / suspects that this is BFS and says I should not worry, but wants to rule out the more serious pathology.... We'll see... I hope all is well and I can just get the news and pick things back up again. It's really upsetting and disturbing my life.... I was about to start a new business, part way through set up and lost motivation... generally fit, although I was a smoker- but Gave uyp a month ago. Never felt worse... Typical eh! But you are not alone... Trust me. God Bless
Wow! You took the words out of my mouth. Our stories are identical. All of it. From the knees, to the soreness, cramping, fatigue, tremor, and difficulty walking. And I just quit smoking a month or two ago. And I had the brief gym twitches too, which are entirely unrelated to herpes twitches - which are chronic. Sometimes my thigh/calf/foot muscles just feel tired, fatigued. Still twitching. I see the neurologist tommorow and have some tests lined up. Let's keep in touch and see compare what the doc's say. I also met someone with the exact same story as us too, so something is up with this virus. It's very bothersome & becomes difficult to deal with. Appreciate it.
Last edited by Let It Bleed; 11-11-2004 at 12:26 AM.
Went to the neurologist today. My Nerve conduction velocity (NCV) was normal from what I understood - but my EMG results won't be ready until tommorow, at the earliest. I discussed my meningitis with the doctor, but not the Herpes. I also informed him of my nasty car accident three years ago, in which I was partially ejected. I wanted to let him to take the lead and see where he went with it. I never mentioned the Herpes, I just told him my symptoms and let him do the work. It was said an NCV study is often normal even in the most extensive nerve damage cases, so that's why we did an EMG as well. We did discuss my car accident, and he says that he thinks I have some form of scar tissue around the nerves at the base of my spine?? Coagulation? I'm not sure what he meant. Can anybody help me out here? "A NCV test reflects the status of the "best" surviving nerve fibers and may remain normal if even a few fibers are unaffected by a disease process. A normal NCV test result can occur despite extensive nerve damage." That's basically what he said. I'll try to find out more tommorow. He had no solution at this time, until we get the other results reviewed and compared. Let me know how yours turns out.
By the way, I was talking to a woman who's 25 year old daughter died from Herpes. The virus became disseminated or something, by the time they discovered that HSV was the culprit and started IV acyclovir, it was too late, her organs started shutting down and she died. And here we were always taught it was a common STD that was nothing more than some occasional blisters and a cosmetic problem.
Last edited by Let It Bleed; 11-11-2004 at 04:48 PM.
Well, I told him about the symptoms. All of them. I also told him I had viral meningitis last winter. The burning in my feet and legs started after my accident, the twitching and pain started after thw herpes infection. I told all this to the nurse, I just didn't specifically mention the Herpes to either of them, although, they know it was viral meningitis. I try not to self diagnose or medicate and left all avenues open to him, and let him do the work. That's what he is paid for. I mentioned the car accident because I'm aware that also injured my spine, and possibly the nerves. I felt they needed to know that, just in case. He was simply testing for nerve damage and was uninterested in the cause. Thats it. I know Herpes is part to blame. Sam shared my story. A few other's too. I'd like to find out what they find out, and see how this progresses in all of us. Perhaps, together, we can find a way to manage it.
Well, I just got in. Didn't get a chance to get my EMG results today. I was helping a man remodel one of his rental houses. Nothing like twelve hours of labor to set my nerves and muscles off. My legs are cramped and painful & alternating between burning and tingling. My back is in spasms. My head is splitting. Why do we suffer from this, while the other's just get a few blisters from time to time? Sam, anyone else, please keep in touch. I'd like to know what your physicians say, and how you manage your symptoms. I'm taking an anti-inflammatory, pain pill, and muscle relaxer. I only take Valtrex during an outbreak. I'm waiting to get on neurotin, we'll see how that helps with the nerve pain. Let me know something, take care.
Hi Let It Bleed,
I think you should mention to the doctor that you have herpes. Doctors go a lot off what you tell them. Car accident and menigitis are significant, if you think the H is too, or could be a cause, let him know, then he can make a decision to pursue that avenue or not. Just my .02 worth. I had not heard of any of this prior to this thread. When I am very tired lately my whole body is starting to ache and a little spastic. That's when I know I better get off the computer and go to bed. Also if I am falling asleep on the couch or something sometimes my leg will just jerk all of a sudden. Very weird, but I never would have thought to connect it to H. I need to do some research i guess. Thought I was just getting old and stuff.
Best of luck.
The plot thickened on me again. Two nights ago, I went to bed not feeling well. I woke up a few hours later, unable to breathe. My throat was closed. I forced some wheezing, and ran to the bathroom. My nose, mouth, tounge, and throad were all severely swollen. I was having difficulty breathing, and was taken to hospital. Diagnoses was a Anaphylactic reaction (possibly due to the chemicals used when I was remodeling a house that day, and the day before). I responded to epi/IV stereoids and made a recovery later that morning. My mouth remains swollen, however, I'm taking oral steroids for that. Well, the moral of my story is that the steroids have greatly reduced my leg problems, twitching, and pain. A lot. My symptoms presist, but have been reduced. Now - how does Herpes and steroids and PN/BFS all fit into the equation? The problem is that they can only prescribe this medication for about a week at a time.