I started geting twiches after a virus with a migraine

Information about how to manage or reduce the severity of BFS symptoms

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I started geting twiches after a virus with a migraine

Postby Dannyboy777 on February 24th, 2012, 4:42 pm

I have seen many doctor done many tests wich all come back normal.. The twitching started about a month after a virus and a migraine.. After the migraine was gone I was left with pressure in my head wich comes and goes as well.. And along the way it's been almost 5 months now i have been having joint pain(not so much anymore) now I've been having a lot of random aches and nerve pains.. I have all my strength still and don't really have fatigue .. My doc thinks I have some kind of
Post viral syndrome.. Bfs seems to fit what I have.. I've done extensive testing for Lyme.. Should I go see a neurologist ?? I don't have weakness or any coordination problems.. Just a lot of uncomfortable nerve sensations tingling pin pricks random aches.. The twiches started in my back and one spot then travelled everywhere over time they don't bother me much.. The nerve pains scare me the most..
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Re: I started geting twiches after a virus with a migraine

Postby bobajojo on February 24th, 2012, 5:28 pm

I think if anything, seeing a neurologist will give you some reassurance but your symptoms sound very much benign. I also had a migraine in the months leading up to BFS. I just came back from the Mayo clinic in Florida and they said that they believe many things can cause BFS including the bodies response to a virus (you can also read about this in BFS in a Nutshell). So to me, BFS or possibly PNH seem like a very logical explanation to your symptoms. -Matt
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Re: I started geting twiches after a virus with a migraine

Postby Dannyboy777 on February 24th, 2012, 8:15 pm

Thank you for your post.. It's been a pretty rough ride having all these weird symptoms, it's so uncomfortable... If the doc told me I had a disease I wouldn't of been surprised
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Re: I started geting twiches after a virus with a migraine

Postby Dannyboy777 on February 25th, 2012, 7:15 pm

whats PNH?
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Re: I started geting twiches after a virus with a migraine

Postby ImOK on February 25th, 2012, 8:34 pm

Danny - my start into BCFS was very similar to yours. I also had a lot of nerve pain; gently trying to work it out like you do with a cramped muscle often (not always) worked for me. I found also that taking/consuming some immune boosters and taking very good care of myself was helpful. If you are interested I can give you some product names, etc. One thing that you have to realize, and my neuro agreed with me on this, is that they won't find much, just sensitivity (symptoms typical with a heightened nervous system) and nothing that says you are sick in their book. However, you may have to go just to hear it so you feel sure about it. Also, because you are sensitized, you will react differently (more extremely) to situations and other stimulus so whatever you can do to level out is a good thing. Getting weirded out over symptoms only makes it worse. Or rather any additional stress, physical or mental, makes it worse. IMO - find some ways to relax and build yourself up physically and mentally giving yourself time to heal. Best of luck.

PNH peripheral nerve hyperexcitability - read BFS in a nutshell and there is a pnh website also at http://pnhinfo.com/.
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Re: I started geting twiches after a virus with a migraine

Postby Dannyboy777 on February 27th, 2012, 2:05 am

ya the pain and the strange sensations wierd me out..tingly in my mouth somtimes even.. sometimes random aches in my teeth that come and go like all my pains.. also noticed my joints clicking like my hips (never heard them click before this). does this relate to bfs??
and ya no doctor ive seen can say from any test or anything that im sick and i have seen a bunch of them ..i would love to know some products that would help would appreciate that a lot.. i guess things like coffee and too much sugar would make things worse too??
Ya i was really worried about lyme before but my thinking was completely irrational my sister and a few people she knows got a migraine from a virus the same week i had mine but they all recovered how come my nervous system went all wacky??
im still kinda confused about all of this.. not getting straight answers from the doctors doesn't help i would love some answers :( thank you for sharing
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Re: I started geting twiches after a virus with a migraine

Postby ImOK on February 29th, 2012, 8:35 pm

This is a problem for a lot of bfs/bcfs'ers - you feel awful but you're not 'sick'. Look at it one way and that is excellent news as they can tell you have no life-threatening illness; looking at it like you just want to feel better and get rid of the symptoms it is just really really frustrating. My general doc was 'afraid I was becoming one of those chronic fatigue weirdos'; then I started having 'real' tissue injuries and she cut that out. It was tight and spasmed muscle sets, which, by the way, can cause misalignment and throw your skeletal balance off. Maybe why you are hearing a lot of clicking - uneven pull on the joints. If you get any swelling try some physical therapy - they can be helpful.

You just have to work with it and not be lazy about it; warming up well and doing light work outs & gentle but thorough stretches may help you. Products: I took mostly stuff you can get easily and it seemed to help a bit; EmergenC for energy and extra C (helps to stay off the caffeine and sugar), Immunity boosters like Kyolic formula 103 (there are others) whenever I felt like I was exposed to a virus,, alpha-lipoic acid when the sensations were bad (helps in nerve healing), etc. Also trying to treat your body right by doing all the stuff it needs like good hydration, enough exercise & sleep, a better diet.

Some people swear coffee and sugar makes them worse - I don't know - I just cut back in general as it isn't the kind of stuff you take to boost your defenses.
Why did you nervous system go wacky and not others who had the same virus? Wish we knew that answer as many of us would be cured by now. I know for me it had something to do with the huge amount of stress I was under at the same time so ask yourself if that could be contributing. There's a lot written about this - how certain compounds build up in your body and make you less resistant to disease & infections (yes, they have actually documented this stuff).

Don't hold out for any straight answers from your doc as there may be none coming - eventually my neuro just said my switches (neural-muscular) were misfiring and it may get better or it may not but usually it improves. He could see that I was basically OK, but also that I had symptoms, etc. He had other patients like me over the many years he had been in practice, so wasn't worried about me but could only offer drugs which would not fix anything.

Well, here it is many years later and I'm pretty much symptom-free. I learned a lot over the years both about how not to internalize tension, and how integrated our minds and bodies are. I mean you know this, it is obvious to most people, but understanding how it relates to you is a whole other thing.
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Re: I started geting twiches after a virus with a migraine

Postby Dannyboy777 on March 13th, 2012, 11:21 pm

thanks so much for your post. ya I think im starting to accept the fact im no gonna get a straight answer from the doctors.. its comforting to know people are going through the same thing :).. you say you have improve?? how long did it take
ive been goin through this for almost 6 months now and i can say that in the last 3 weeks i do feel a bit better... definitely not as stressed and the nerve pains and wierd sensations have gone down some.. it usually comes back a while and goes..
when it gets really bad sometimes i get scared.. i do exercise on a regular basis im a roofer to so my job is very physical.. getting enough rest can be tough though.. i really appreciate your advice.. i didnt even see your post until today dont know how i missed it..
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Re: I started geting twiches after a virus with a migraine

Postby ImOK on March 14th, 2012, 7:37 pm

It took a long time but I think of it in phases. At first I suffered some sort of physical collapse brought on by a very bad virus (h1n1) and lots of stress both physical and mental (about 3 months); my neuro said he had seen it happen before with patients coming off a sudden injury or illness or strong stress (sort of like PTSD). Then the long search for healing where my main mistake was going to too many doctors and not realizing that stress was perpetuating the problem and it was becoming habitual (about 2 years). Your mind-body system learns how to deal with stuff whether you are aware of it or not and much of it is without our knowledge. This is often good because we wouldn't really want to be paying attention to say breathing and heart muscles all the time - the unconscious mind is taking care of this for us while we navigate traffic, have conversations, etc. Things may change slightly if we are feeling a strong emotion like fear or anger (breathing and heart rate change) but we don't 'think' about that usually either - the mind that deals with that is unconscious. No big mystery, right? But the unconscious mind is pretty primitive (think fight and flight) if we remain very unconnected to it - it may solve a problem and keep with that solution even though it is no longer needed. Then, for me the actual healing which took about 2 years and was a combination of physical and mental. So really, if I had been a bit more enlightened I could have cut off the 2 years in the middle. I just didn't understand as much as I do now.

It is simple in the way that discovering how to get along with people is - there is a lot of understanding that needs to take place but none of it is rocket science, it is just a combination of awareness, attention, acceptance, and adjustment. Only it is on a personal level with your body and mind; your health, awareness of both your physical and mental/emotional states so you can make the adjustments you need to. I really believe this is where the majority of bfs and bcfs sufferers get stuck - just as I did. No it is not in your mind and yes it is - we are one unit so what affects the mind affects the body and why we have such awe for the few individuals who suffer great physical injury and still succeed by the power of their minds. The reason why great athletes imagine themselves succeeding and visualizing new things first. Lots of examples I'm sure but I'm here after a long work day and not feeling eloquent.

Don't let it scare you - you can work through it. Start looking for what initiates symptoms, how you feel mentally/physically/emotionally on days you don't have them versus days you do, etc. And think logically - there are no bad neurological illnesses where symptoms come and go like we experience here. Getting rest is important but even if you are having trouble sleeping find another way to rest and calm yourself (why I started meditating). But you could just as well go focus on some small part of nature for a while, clear your head, take some deep cleansing breathes and give yourself just a moment to be at rest instead of rushing through your day. Some friends tell me they get this from sailing, fishing, going on hikes, or doing yoga so you don't have to do something that feels odd to you as long as you take the time to rest in some way. You do physical work so find something more relaxing and make it part of your health regime to do it regularly. There are some links on this forum to guided meditations - free online - for instance. Good luck :)
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Re: I started geting twiches after a virus with a migraine

Postby Dannyboy777 on March 16th, 2012, 12:40 am

thanks a lot for you wisdom on this.. ya i kinda feel right now im a little bit stuck on one hand i know that im not really umm sick i guess.... however the pains and twitches seem well... unnatural so this is telling my mind there is something wrong its not good this isnt normal.. and so on.. this is where sometimes i get stuck, and also go back to thinking (when it starts getting bad) that i have some kind of progressive neurological disease.. this thinking totally crushes me sometimes... ilike you say acceptance and the learning to adjust is what im working on.. right now im always feeling that need to look for reassurance ya know.. im sure you can relate.. i think im starting to come around lately im handling it the best i have yet.. so glad i heard about bfs and there are people reaching out :) i like that the name has the word benign in it!! lol thats comforting to to tell yourself.. its benign11!
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Re: I started geting twiches after a virus with a migraine

Postby ImOK on March 17th, 2012, 9:30 am

No wisdom - just my viewpoint and how things happened with me. We all handle things differently and it's important to find your way through it; also to know that others have so you can too. I'll post an article today - look for it as what is the most important is that the musicians don't give up, they learn to work with their symptoms, find their own 'cures', and survive.
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Re: I started geting twiches after a virus with a migraine

Postby Poodybutt on April 12th, 2012, 9:26 am

Hi, new to this board...About 2 months ago, my daughter had a migraine headache so bad that sheended up going to the Emerg. Room. They did a CT scan, found nothing except a sinus infection. The headache went away, then the twinges, tingles and numbness in my arms, legs and feet. She then went and had a brain MRI, spinal MRI a nerve study thatshe thought results would come back wrong because the only tested one side of her body. She is convinced she has MS or ALS or something terrible that she would not see her2 yr old son grow up. All she can do is cry or sleep. She is barely functional!!! She was given a script for Xanax to calm her down when needed. She then went to another neurologist, told him she did not trust the other doc, and this doc only did one side too. Said number 1, it is too expensive to do all extremeties and if Ishe had MS or ALS (as her being on WebMD constantly has got her convinced) that the symptoms would be on all sides, not one. She also kind of pushed for him to do a spinal tap!!! and to redo the nerve study. He only did one side too.....Everything has come back with good results. Spinal tap came back clear also. They say she doe not have any of the dreaded diseases, just super anxiety and stress. He prescribed taking tonic water...2 8 oz glasses a day and doing something to reduce the anxiety or stress in her life and has given her a script for paxil which she will not take.. She feels like that would just be masking the problems as she is still convinced they are missing something. She also hasOCD that has gotten much worse since all this started 2 months ago. In addition to having high anxiety and stress....She is now in deep debt with doctor bills. She is going to see a psychologist tonight. She thinks it all sounds like stress or anxiety. She has been told the brain is a powerful thing and can convince your body you have a disease when you really dont. Like I said.....it is bad to spend so much time on
WebMD and too many people self diagnose themselves.....The second neuro doc she went to said she needed to stay off the computer but she still cannot accept that there is nothing physically wrong. The doc said it could be caused by something viral and go away as fast as it came on.

I am very worried for my daughter. I dont know why she will take the xanax (probably because it is immed. relief) and not the paxil. I told her that if she does not follow doctors orders...why go to another one because you probably wont follow their orders either. Anyone have suggestions for me to give to her? She is very close to losing her boyfriend of 6 yrs because she is constantly focused on this, and does not do anything but sleep and cry and lets him take care of the baby.
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Re: I started geting twiches after a virus with a migraine

Postby plainslady on April 12th, 2012, 12:49 pm

I've been in your daughters shoes. Its almost been a year since I started down that road she's on and eventually decided that perhaps taking my life was the best thing to do. I only say that because I want you to understand the hell that is health anxiety. I trusted no one, no doctor, no specialist. I would go to the doctor, have tests and they would come back clear. I would come home and instantly begin searching online because I was convinced they were wrong or were missing something. I would lose myself for hours online, taking notes and reading into the wee hours of the morning. I would find another diagnosis that I thought would fit, and back to the doctor I would go and the cycle started all over again.

I've had anxiety since I was a young child, but it has grown and intensified as I've aged. I've been off and on medication since I was a teenager, and I'm now 33. I wish it were as simple as taking medication, but the sad truth is that most of these medications have terrible side effects. I was doing well on my most recent medication but have now had to wean off because of intolerable side effects. It brings you to your knees because you wonder if you will ever be well again.

My first steps to fighting this was realizing what anxiety was capable of. I took my love for internet research and poured it into learning about anxiety disorder. The website anxietycentre.com may have saved my life. It is the most comprehensive site I have found to date. I finally began therapy and have learned to identify what behaviors trigger anxiety. The hardest part has been developing the discipline to stop googling symptoms, diseases, and reading forums for people with deadly diseases. Just last week I struggled with this. My anxiety ramped back up and I finally had to force myself to stop. I go so far as to have my mother moniter my internet usage as a means of accountability.

All those things are meaningless until she decides its time for help. I wish I knew the best way to convince her. I'd tell you in a heartbeat if I did.
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Re: I started geting twiches after a virus with a migraine

Postby mike fla on April 12th, 2012, 3:25 pm

If she is going to take a long term benzo medicine it might be better to take klonopin rather than xanax. I was good on xanax for about a month but the problem with it is that it does not last as long and it can be addicting. I tried to take it once a day and started getting breakthrough symptoms after about 12 hours. Klonopin has a much longer half life while providing many of the same benefits.
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Re: I started geting twiches after a virus with a migraine

Postby Yuliasir on April 14th, 2012, 8:48 am

ohoh, as Plainslady says, I also was both in your shoes and in your daughter's ones...

my daughter had an onset of ophtalmic migraines (surely stress-related) two years ago and I was so frightened (she tooo - because at the peak of each episode she has half of her vision field just switching off) that it raised a flare-up of my anxiety disorder and finally ended up with my BFS... So there was a period of time when we both were visiting the same neurologist - she for her migraine researches (nothing nasty found) and me for twitches, pains etc.

as Plainslady said, the right procedure in treating anxiety and anxiety related disordes is a combination of properly chosen (sometimes it takes months) medication and a mind therapy (whaterver is available and whatever suits better). It is a long long way, especially if she has OCD which need quite a lot of self-manangement, but mind therapy is really necessary supplement to the medication - otherwise she might not understand what exactly are the reasons for her stress and how to cope with it.

I am in certain speaking therapy for three years already and my obsessive fears (35 years of very very bad experience) are much less now (however I missed up a little bit the point where they tried to convert into health obsession - that is why I am here now) ;)))) And my current cosultant did quite al lot in order to convert me from crying creepy zombie saying goodbyes to her 18 -old daughter and beloved husband to quite alive person - as well as did all people here at this site sharing the stories so similar to my own...

having 2 years old baby is still a hard time for young woman so there is more than enough reasons for her stress and anxiety and migraines. I wish your daughter succes in her way to life. I hope she'd be OK.
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Re: I started geting twiches after a virus with a migraine

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