Seeking Help for Syndromes

[Melloweighty2]

I'm writing you cause i'm trying to find help in this international website describe in the perfect way our sindrome.Wich is really a pain in the ass and reduce a lot our life quality.Fasciculations is as i think for most of you the last of our problem.The most important is stiffness,generalized pain,easy faticability,mental confusion memory problem,frequent paresthesias and a constant tension feeling irritability mixed with anxiety and depression.I don't know if anxiety can cause all this problems but for sure any kind of emotional stress tend to increase the symptomsI suffer this syndrome from 12 years and now i'm 30 years old.Before i was scared to have a very bad disease wich would conduct me for sure on the wheelchair.Now i know is not like this.By the way how i suffer is really difficult to explaine cause sometime is something unbelivable beeing at the point i would like to kill my self to quitesuffering...I'm 100% sure the disease is in our brain.Is neurological and start in our central nervous system.No doubt.But why my nervous system is in this f u cking conditions i have no idea.Antidepressive drugs in the past help me fighting the syntoms in the same way of having the less stressful life as possible,rest love of peoples make things easier.But is not always possible and just few stress can dramaticatly increase synthoms.In this case a simple travel to asia with jetlag litteraly destroy me.I'm sure i have some f u cking problem with neurotrasmission a chemical problem in my brain.And i hope research would do something for us cause we are suffering too much.I would like to be included in a trial for Bfs research.Who is the best neurologist in the world for our disease? I would like to contact him...And if is just anxiety i can bet my car in our case this anxiety come from a neurochimical disease.So calling it anxiety or bfs for us doesn't change so much.The only thing is i would like to find something make me feel better in the long term wich can cure our brain disease nothing more...Thank you!Eddy

 

[AussieSurvivor]

Eddy, all the issues you describe are the the same for many of us. so you are not alone with that. And yes anxiety, stress, tiredness and many other day to to day life experiences are not compatible with BFS. That is just the way it is. You just have to learn to manage/control the 'disease' or it will most certainly control you. Manage the disease to be able to live YOUR life, not the life that BFS will dictate...if you let it. Freaking out about it, does you no good, but make it worse. BFS is as much mental as it is physical. Control the mental stuff and the physical stuff will follow. Good luck with finding a specialist BFS neuro. You wont. BFS as the name suggests BENIGN facsilation syndrome ( ie you wont die from it) holds no 'interest' for the medicos . For most neuros it wont even register on the radar as even remotely scientifically interesting. Let alone some multi-national pharmacutical company producing some miracle pill!....I wont hold my breath on that one. They are much more important (and money making) medical ailments 'fish to fry!' for the medical/pharmacutical fraternity. Apologies for sounding cynical, but I actually call it realism....and it is what it is.cheersRodger

 

[Melloweighty2]

But at the end this f u cking bfs in my opinion must be really connected with anxiety brain circuit...Don't you think doctors are studing in this way? And you should know we are a lot with this syndrome more than you think...Maybe doctors should find a solution...I would like to be included in a study about bfs...

 

[HoneybeeBzzz]

Actually, by far my worst symptoms are the fasciculations, I do get sensory issues as well, but it's the twitching that really gets me depressed and anxiety ridden...either way, I too wish there was something that could be done, some kind of medicine that would just stop them completely along with other sesory issues. Didn't it used to be this way with Fibromyalgia too.... I mean Dr's didn't really care about it and thought it was all in the patients head or whatever and now there is active treatment and commercials for it and everything...maybe if we all complain enough??????